Ibrance (Palbociclib)
A bottle of Ibrance came in the mail today. I will start taking it tonight with Femara. Hoping that others starting on this drug will join me here to talk about side effects and how to avoid or treat them. So far, I've been warned about low white counts. I run very low as it is, probably because of my extensive bone mets. Anyone currently on Ibrance?
Edited by Mods to add Mod Note: Unfortunately, Romansma passed away in 2016. Our thoughts are with all who loved Hope.
Edited by Mods to add:
For more information on this medication, see the main Breastcancer.org site's section on Ibrance for information on how it works, who it's for, what to expect, and side effects. Also, read the latest research on the Research News on Ibrance pages.
Pfizer Oncology Together is a first-of-its-kind program for patients taking Pfizer Oncology medicines that offers dedicated social workers called 'Care Champions' to help navigate the complexities that accompany treatment, such as identifying resources to help find emotional support, and workplace transition, transportation and financial assistance.
For cancer patients taking a Pfizer Oncology medicine (e.g. Ibrance) or caregivers, please visit www.PfizerOncologyTogether.com.
For live support call: 1-877-744-5675
Comments
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No, but I just want to wish you luck. I hope it does the trick and treats you kindly. {{hugs}}
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Thank you Sandilee! I'm hoping to be an overachiever on this! Exceptional response is what I'm after!
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Romansma,
Sorry for posting on this Stage 4 forum. I am in a phase 2 clinical trial at Dana Farber/MGH combining Palbociclib and Hormone therapy for early stage BC. I am just finishing up my first month. I would love to join a conversation about side effects, as I have only talked to one other person on this site who has been on the drug. I am taking the standard dose and have already had my 14 day blood work completed. There are about 80 people enrolled in this trial. However, I don't want to intrude here, so want to make sure it is OK.
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Yes, please join us. Side effects shouldn't be too different between the stages, although PFS and OS will be. Do you take with or without food? Morning or evening
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They want you to take it with food the same time every day. I have been taking it at 6:00 pm. I guess according to the trial nurse it gets absorbed better. My blood counts were a little off on day 14 but not enough to make any changes.The first couple of weeks I had no issues at all. Really tired yesterday and today but only have 2 days left in this period and then a week off, so it will be interesting to see if you rebound that week. Back at Dana Farber next Friday for more blood work
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Hey Romansma, thanks for starting this thread.
By some miracle, I was able to get palbociclib (with Femara) via expanded access on clinical trial. I started a couple weeks ago and have had zero side effects. I take both pills in the evening with food. This drug combo is a long shot for me as I've exhausted all the endocrine therapies, but even if I get a couple months break from chemo, I'll be happy.
Look forward to hearing others' experience.
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I have been on a trial since last June where I may or may not be on palbociclib. I personally feel I might be on the placebo arm because I have had zero side effects. I'm taking it with faslodex and I haven't really had any side effects from that either. Sorry I can't be more helpful. I'm on a message board for people who were on the CDK 4/6 inhibitors and most people only report the low white blood counts. HTH!
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Ok, good. Decided to take my dose right after dinner last night. Good to know that's what others are doing too. There were no instructions with the packaging when it was delivered.
I am not taking this on trial and yes, it's a bit of a long shot for me too, but I'm not interested in chemo right now.
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Romansma,
I just noticed this thread! I have just been approved to receive Palbociclib/Letrozole, and will start on it as soon as I can. My pharmacy is trying to get the drug, but it shouldn't take too long. Thank you for starting this thread, and please continue to post any side effects you may be experiencing. I will join this conversation as soon as I start. Thanks!
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I will try and share as much information as I can from the trial I am on as I will be followed pretty closely . I have access to the trial nurse and see a Dr. Once/month. The trial is basically about the side effects of the drug and is a feasibility study on whether palbociclib can be tolerated enough to become part of standard treatment
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Springlakegirl, I was told you could only get Ibrance through a specialty pharmacy. Is that what you are doing? If not, you might call MO and ask them to check. When I went on Afinitor last year, my MO gave me a prescription to get filled which was not the way to do it. It could only be filled by specialty pharmacy, too. It wasted a few days for me.
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Yes, they are getting it through a specialty pharmacy. Thank you!
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Great! Should only take a few days. Day 2 is down the hatch! I haven't noticed anything different.
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Hi everyone, I am presently in the Palbociclib, Phase 3 trial with Faslodex since Nov 21, 2013. If I may be of some help in any way, I would love to join in! Don't want to intrude unless everyone is ok with it.
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Welcome, Susan. Please share anything you have experienced. I'm a newbie on Ibrance and don't really know what to expect.
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The first two weeks I had absolutely no side effects. This week however, each day I have felt increasing fatigue, almost like mono. My last day in the cycle is today and then my week off. I am interested to see if you bounce back during the off week. Like all these drugs, they don't take weight into account with the dosing and wonder if you are smaller should you have a lower dose? So much to learn about this drug and how it works. But, we need these trials to make progress. Glad to see something moving through the pipeline Faster, especially for you stage 4 ladies.
After my first month, I will have a LIST of questions when I go back to DF next week.
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Good to know, Lenn. Thanksfor sharing.
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Lenn, my energy bounced back on my weeks off - my neutrophil counts also came back up, in the beginning enough to stay on the trial. I believe that it helps to exercise - even though it's difficult through the fatigue. (There are 2 dose reductions allowed on the feasibility trial. They may make you wait a cycle or 2 to reduce.) Try to steer clear of people with colds - after at least 5 years without a respiratory infection (children and hubby getting sick many times), I had 3 intense infections within 2 months on Palbo. I even required inhalers to shake one. I became very in tune to who had the sniffles... Hope the fatigue levels off for you.
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Thanks for the info. Daisy.... Looking forward to the week off. I usually exercise everyday ( yoga/cross country skiing, etc. but definitely pushing to do it this week.) I didn't fight it today ... Did nothing much.
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When I first started this study, my only complaint was a headache and slight nausea for the first two weeks, then the fatigue set in. The final part of the cycle ((off meds for a week) did and still gives me tiny red pimples usually on my legs and arms that itch non stop. My WBC slowly started to go down, including RBC, HGB and HCT every month. WBC hovers around 2.3 to 2.6. Even though its quite low I have never gotten a cold or flu, although I am always careful about staying away from anyone who appears sick! I just want to encourage all of you that for me it has been very doable, in spite of the fatigue. Lenn mentioned exercise every day - if you are able to do it, then I feel it would help with the fatigue. For me I have been on this drug combo Palbociclib/Faslodex for over a year and my cancer has for the most part neither progressed not has it shrunk. There are many others in this study whose cancer has shrunk substantially and they are continuing to do well! I wish all of you the very best on this drug! Romansma I hope that you are an overachiever!!!
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Hi ladies, I took my second dose today. So far, feeling fine. My onco wants bloodwork done weekly while on this. So glad to be here and listen to everyones opinion!
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Does getting out of bed to get the remote count for exercise? Kidding, sorta. Too much pain for real exercise, but I stay active taking care of kids and dogs and traveling and living. My MO is worried about WBC for me. I hover at 2.1-2.6 without any treatment. Probably because of the extensive bone mets. Worried that I will have to take too many breaks to let my blood counts recover. Oh well, cross that bridge when I come to it. Day 3 down the hatch!
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Romansma - Kids, dogs and remote all count in my book! Everything I hear about the drug is that they can work with the dosage in order to keep you on the cycle rather than have you go off. I know that was true in the Paloma trial and not too many had to drop out. Yeah for day 3 !!! When will they do your blood counts?You do sound like an overachiever!
Welcome SMR...
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Hi SusanAnn,
I have been on Faslodex shots and have been getting those red bumps as well, and they bleed (they are very itchy so I can't resist scratching them a little). I am not (yet anyway) on the Ibrance so it must be the Faslodex causing the red bumps, hopefully the Ibrance doesn't cause more of them. I hope they don't get infected if I go on Ibrance since low WBC can cause infection. Still waiting to hear from the doc on the Ibrance, and thank you everyone for sharing your experience - good luck everyone!
Romansma, I agree you are handling a lot, I could not handle caring for a dog along with kids (these winter storms alone have done me in!)
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Good morning! I am having my blood drawn next week, so we will know how it's effecting wbc pretty early on. Hope you hear soon, Susan. Did I mention 4 dogs? Only 3 kids still at home, so that's getting easier. Yup, I am cra cra! We live near the beach, so no snow here. Headed to the mountains tonight to take in a little snow at Big Bear Lake. Hope we get snowed in and have to play cards all day in our jammies! I have to say, my mood has been soaring since getting off Xeloda and starting Ibrance. Feeling so hopeful! Have an good day everyone.
Hope
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Romansma I have just started on Ibrance also along with Halevan. My onc mentioned taking me off of the Halevan if he sees the results he expects with the Ibrance/Femara. I can only pray that we all get good results.
I do neupogen two days in a row after my Halevan to keep up my WBC and my onc wants me to continue to do neupogen with the Ibrance, even if I go off of Halevan. Not sure how much and when he will have me do the neupogen, but we are going to discuss. I'm wondering if anyone else does neupogen. I have not really noticed any side effects and my WBC have stayed within normal range.
I have noticed slight nauseau for several hours after taking the Ibrance, but I am okay with that. I think of it as weight control.
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I haven't noticed any nausea, but I'm taking it at night. Maybe I'm sleeping through it. My husband woke me up 2 nights ago around 3am because I was making a weird moaning sound. I think it was because of the back and hip pain, but who knows. Maybe I was having one of THOSE dreams! Doubt it! Menopause has took care of that
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Romansma thank you. I had been taking in the morning, but think I will switch to taking at night. You're right, you probably sleep through the nauseau. I took Afinitor at night and never had any nausea.
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Hi
Can anyone tell me if you lose your hair on Ibrance? I saw that hair loss was one of the side effects.
Thanks!!
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Don't know first hand about hair loss. The pharmacist at CVS Caremark told me that it is listed as one of the possible side effects, but only a small percentage of women lose their hair. Hope this is the case. Would be interested to hear from those in trials who have firsthand experience.
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Trial paperwork says 1 - 10% temporary hair loss. They refer to it as an "occasional" side effect. I am only one month in ... So far no hair loss.
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I had my counts checked yesterday and white counts are lower, but not enough for neupogen (yet). My platelets were quite a bit lower, seems like that's one of the main side effects. No nausea for me either, though maybe taking in the evening with dinner is key. So far, I'd say this drug combo is a piece of cake, crossing fingers and toes that it will be effective.
Have a great weekend, gals!
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Oh - and I can't comment on hair loss as I have no hair thanks to begin with having just done 5 cycles of taxotere.
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Hi Thinkpositive
When I started this study (Palbociclib/faslodex) my hair was very thick, a year later it has thinned quite a bit. Not sure if this is the same for everyone.
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Hi 3Holly
Just wanted to let you know that for me OTC Cortizone 10 takes care of the itching. Don't use the gel version as it burns, especially if its bleeding! I wish you all the best and hope that you get on Ibrance also. The combo of both drugs seems to be very effective for a lot of people with very few side affects!
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SusanAnn,
Thank you so much for this advice, it is so helpful! I need to take care of these bumps since they keep popping up ever since starting the Faslodex, and I don't want infection. I am so glad to hear the Ibrance is helping you and so many others. Hopefully I will hear soon that this will be my next step.
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3Holly,
I have been on the femera/ibrance since June. For three months I was getting the itchy sores and bleeding cause you cant help scratching. It even had my eyes itching very badly. Last month they biopsied the sores and it showed to be reaction to Ibrance. They changed my dosage to 100 mg. So far thru one month no rash or sores. Hope this helps. They also gave me hydrocortisone OINTMENT2.5%.
Linda
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I started on Ibrance on Feb 15 and am having my labs drawn on Tuesday (the 3rd). Slight nausea for a few days, and now some fatigue, but everything has been very tolerable. Let's just hope that it will be effective. I've failed most of the hormonal/endocrine and was JUST ready to switch to Gemzar after failing Abraxane after just 5 months. Praying for stability.
Liz
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I did 6 months on the feasibility trial for Palbociclib (Ibrance). I did have extensive hair loss (and one eyebrow). I have had alopecia areata for 6 years - usually one spot at a time, nickel to quarter size, which grows back after a few months. On Palbo, I lost an eyebrow (never before) and about 1/3 of the hair on my head - many diffuse bald areas as well as thinning. When the trial nurse asked me about hair loss, I tried to demur saying that I experience alopecia (usually extremely limited hair loss). She told me that many women were experiencing hair loss. I have NO idea how many she meant. My dramatic hair loss is very unusual for me. After 1+ 1/2 months off Palbo, I am beginning to see signs of future regrowth (changes in follicles), I hope... Hope this helps.
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Hello ladies on Ibrance...I have just been taken off of Arimidex after 13 months...I start Ibrance and Femara next week. I will be happy to report regularly on any side effects. The only way I am able to have this medication is that my husband is Air Force retired and thus through TriCare for Life the payment will be made...The physician and I were surprised that the insurance will cover it as I understand on the open market it is $5000 month. thanks for this thread...Carolyn from Music City
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It's actually closer to $10k per month which is on par with Afinitor. Great information being shared here. I'm a bit concerned with the reports of hair loss. Do weknow what then percentage of women experiencing hairs loss is?
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Hello Ladies,,
I have had a very rough time on Ibrance due to lowered white cells and dangerously low platelets. I have been fighting this rotten Cancer for five years next month, so my body has pretty much been thru the mill chemo wise. I had to wait to start this combo (Ibrance and Femara) because my platelets were low. As Ibrance is known to be a problem with platelets my doc waited, hoping the platelets would improve. Well, they did not and after one month on the drug my platelets were constantly going down every time I had a blood test. Think it was biweekly and then weekly blood tests. Finally, when I completed the first cycle they continued to fall even tho I was off the drug. As of last week I went down to a count of 28, My doc got very alarmed and ordered a transfusion of platelets only. The next week I went down AGAIN. To 5!! We all. ( onc, DH and I were all very scared as you can bleed out when that low). Now he ordered another platelet pac and two units of regular blood transfusions because my whites had now gone down significantly as well. I am beyond fatigued. So exhausted I can hardly move. It was last night that I had the final transfusions. I don't know where we will go from here
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Ah Judie, I'm sorry. I really hope your doc can get a handle on this for you.
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Linda,
Thank you very much for that information - since I am not yet on Ibrance, I know the itchy bumps are from the Faslodex (hopefully it won't be a double whammy when and if I get the Ibrance, but I agree the dosage will probably be critical, and that is probably what my doc is trying to decide on). Maybe dosage depends on the person's size, allergies, and other factors, hopefully these hospitals are sharing their results so that they can figure out the safest dose for everyone.
Judie,
I am praying that your blood counts come back soon and that you feel some relief.
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Judie,
Maybe if they reduce your dosage, you may do better as 3Holly says. Hope you recover & your onc gets you on something that works well for you.
Terri
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I am 3 days into the off week and my energy level definitely improved immediately. Blood test next Friday and then I start the cycle again. I will be interested to see blood counts next week. Week 3 was the the only problem in this first cycle and I will be interested to see what they say about the dosage when I go to Dana Farber on Friday. I do agree they still have some work to do to figuring that out.
Good luck to everyone on this new drug. Thanks Romansma for starting this thread. 1-10% for hair loss according to DF paperwork.
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I've had increasing hot flashes this week. As irritating as they are, I'm happy. Probably means the Femara has some effectiveness. Hopefully
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Judie - so good to hear from you, though I'm sorry about your low platelet count. Those are some scary low counts you've had, I hope between giving you extra platelets and perhaps reducing your dose of Palbo they will be able to give you enough of a boost to allow you to stay on this drug. I think of you often and hope you are doing okay.
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Thank all of you for the good wishes and suggestions. I will definitely discuss possible lower dose with my onc. That sounds like a very good idea. The drug sounds so promising I would hate to have to get off it completely.
Hi Nancy, I think of you a lot too and always wish you well. If I head up Seattle way to see my son I will call you and see if we could have coffee together again. That was fun!
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I just started on this combo last week so no real side effects yet. Noted the various comments on low platlets.
When I was on Abraxane my holistic pharmacist recommended Ashwagandha. My onc was not even aware of this at the time, but now he recommends this. I took it twice a day before meals and it really did help with the platelets. Not sure if it helps with the low white cell count, but some things I've read say that it does. Anyway, it is said to help for many things including immune system. I just ordered a new supply to take with the Ibrance/Femara.
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hi, I am in clinical trial w/ palbociclib & faslodex, monthly, starting 9th round. Getting x-geva every 3 months. My ANC takes a hit from 1 st month started, so we knew I was on Palbo. Due to immuno suppression, I have had c-diff infections & yeast infections. Fatigue is another problem too. I get scans every 2 months, so far my mets is only in my bones.
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I can feel fatigue building. Very tired. Vivid dreams too. Anyone having more vivid dreams, or just me
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I just did some poking around. Looks like vivid dreams and nightmares are a recognized SE of the Letrozole/Femara. Fun! On the good side, it seems to indicate the Femara is probably working. My hot flashes are really rolling too! Wonder if it's the Ibrance enhancing the Femara? I took Femara with Faslodex last year and progressed pretty quickly. We shall see
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Thanks for suggesting this thread Romansma, it looks like I could still have ibrance added, I'll find themoney if necessary.
Ramade
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I do feel some fatigue. But I think part of it is that I have trouble sleeping. I haven't had any issues with dreams as yet, but I've only been on this for two weeks. I guess I may have something to look forward to.
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rest up Romansma. Sounds like it is working. Yea !!!!!
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Hey Patty! Thanks for popping in. I sure hope you are back home, feeling better!
Starting week 3 and so far, increased hot flashes, some vivid dreams/nightmares, and increasing fatigue. My cbc came back with lowered wbc, platelets, but not crazy low. I can handle this! Hope it's working!
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I had my one month visit at Dana Farber since being on this drug. My week off was fine. I felt great. There will be no dose change this month. My awesome MO there said that what side effects you have on the first 1-3 months is what you will have on this med. They are not seeing many changes or " funky" things happening after that. Most of the adjustments they are doing are in the first few months. It seems like you either get Neutropenia or you don't. My mid month blood counts were not that bad either... A little lower but bounced right back on the off week. Glad to hear this is going well for you Romansma. I do have my first cold in two years....can't shake it.. But winter has been long here in MA. Heating with wood.... Tired of the cold! Maybebe my
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I meant to say: maybe my body is tired of the cold!
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Hope that cold is going away, Lenn. I'm still doing good. Getting very fatigued! It will be an interesting week. But, if this is as bad as it gets, I'm grateful. So far, this has been a piece of cake when compared to Afinitor, or even Xeloda. Just hope it's doing the job
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Hi there women!
I just got into a study at Georgetown for Palbociclib/Ibrance plus 5FU which I think is a great name for a chemo drug. I am calling it the FU cancer trial. The trial is for Stage IV HER2+ and you also have to be tested for something called RB to qualify.
Just "failed" kadcyla which was disappointing. It did not work for me; progression in lymph nodes, bones, and lumps in various places. And the Kadcyla had awful side effects. I feel like I am still recovering from it -- tired and just feeling blah.
Anyone else on this trial? I start the Palbociclib on Friday and will let folks know how it goes. It is cycles of 2 weeks Palbo then 48 hours 5FU. Will be on it as long as it works. Hoping for the best!
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I hadn't heard of this trial, Cancerthriver. Hoping someone comes along that is also participating. Either way, we will be looking forward to hearing how this works for you
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Cancerthriver I've not heard of this trial either but am really interested how it works for you. Please keep us updated. I've just started the Ibrance with Femara. I also failed Kadcyla after only three months. Did not have the side effects that you did, but was hoping for so much more with the drug. My onc said that he has been very disappointed in that it hasn't worked for most of his patients. After after all the hype about this being the new and improved herceptin.
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I would never compare myself to all you stage four ladies.... Just someone taking this drug cold.... Trying to learn the big picture as I do it and hoping it helps you as I go along...trying to make sure science moves forward.... Good luck to you all!
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Good evening ladies! I just got up the nerve to take the Ibrance tonite. Have had since Saturday, so here we go....scared about the blood counts, but will be adding the increasing blood counts to my nightly healing meditation.
Accdg to my MO very few women get hair loss, another one of my fears from my adriamyacin days. You know what they say, your fears tend to happen, so this fear is getting off my plate.
Took the meds after dinner. So far, so good, I have been very lucky with SEs in the past. I have always tended to be very robust, only cancer...lol
Will be getting counts done every week for a few months per my nurse. Keeping my fingers, hands, toes, knees and whatever else can be crossed for us all. WE DESERVE ALL THE BEST WE CAN GET
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Just some good news I read on facebook cancer site. There's a lady who has been on phase 1 Ibrance for 7.5 years and doing well.
Hope everyone has success with this.
Terri
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Wow, that's a long time! I'm really interested in hearing more about how Ibrance is working for those of us that have been heavily pre-treated. Most of the numbers are for women that are newly diagnosed.
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Romansma I agree with you. I'm really interested to hear how women who have been heavily pre-treated like us fare on Ibrance. When I started Kadcyla there was so much hope that this was the greatest thing for Her2nu and was the super Herceptin. The truth is that it really didn't work for most women that had been pre-treated. I'm hoping that this is different. So far after two weeks no real side effects. Really hoping this works for all of us.
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Yes, the side effects of Ibrance seem very good so far. I had a much harder time on Afinitor. Pearlady, did you have Perjeta along with Herceptin? I've known a few women that have achieved NED on this combo.
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Here is an article showing greater response with Ibrance and letrazole for women who have gone thru other tx. This is what convinced my MO to try this for me. I found this very interesting.
http://www.sciencedaily.com/releases/2015/02/15022...
So far SE have been fine, but only 3 days....lol. Myra
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Yes Romansma I did have herceptin and perjeta. The perjeta was very difficult with the constant big D. The worst that I've ever had, but the combo did work. Although I did not achieve NED, I was stable for the 10 months that I was on the combo. It was still working when we switched to the Kadcyla after I pleaded with my onc to get me off of the perjeta. We have discussed that at some point he may put me back on Perjeta but at a lower dose in combo with something else. I'm hoping that the Ibrance does the job and I don't have to get back to Perjeta for a long time.
My concern with the Ibrance is that at this point it is only approved in combo with Femara. I know there are other trials out there in combo with other drugs. I had Femara in the past and it got me to NED for five years, but I'm concerned with going back on the Femara that it may not work as well as if the Ibrance were combined with something else.
For me the Afinitor was very difficult in the beginning, but the side effects did get better after a few months. It then became very tolerable. I never had mouth sores like many women.
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Romansma , pear lady and Myra and anyone else I forgot. Hoping this drug is doing it's job killing those cancer cells without killing out bodies. Years from now you guys will all still be here telling us how it all started. Good luck.
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Myra, thanks for posting that article, I hadn't seen it. 5 months PFS is nothing to sneeze at, but I sure would rather see 22 months like the newly diagnosed are seeing. I will just plan on being part of the long tail!
Pearlady, I am concerned about the Femara, also. I progressed within a few months when I was on it with Faslodex. However, on a good note, I seem to be having side effects from the Femara (hot flashes and vividdreams) so hoping that means it's working on the cancer too. Of course, I know that SE don't always mean effectiveness, but I am hopeful. It's good that Perjeta is still on the table for you. It's such an effective drug and having options is good!
Patty, you are such a cheerleader! Thank you! Is Ibrance a possibility for you? Hoping your pain level is manageable today. I started Oxycodone this week and I'm still not sure. It's managing my pain better, but I'm pretty loopy for a couple hours after taking it. Not a big fan of loopy. Too much to do. Too many kids and dogs!
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Romansma: the loopiness after a few weeks and then the pain really subsides.
Patty: thanks for the good wishes. You have been an amazing trooper!
Myra
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Hello everyone,
I am just finishing up the first week of the second cycle and like the first week in the first cycle there is nothing to report! No side effects at all. Good energy, etc. I still have the bad cold but I have been around a lot of housebound sick kids this winter so I am going to blame it on that and not the Palbociclib. I am taking this drug with Tamoxifen right now, which is approved in the trial I am on. I hope everyone is having a good week and blood counts are coming back OK...
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Just read this article - thanks Myra 1211 - a little different than my oncologist told me this morning - I am beginning to wonder if he is current with new things - I get from the article that it is usually taken alone - is this correct?
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Apackoftwo, it is approved to be taken with Femara. There are several trials pairing it with other drugs and chemos. I'd be interested to hear yourMO's take.
Thanks Myra. I am thinking the loopy is temporary too, so I haven't given up. It took me a couple of weeks to get used to Vicodin. I was just hoping, since they are both in the opiate family, that I'd be able to skip the initial loopy, nauseous part. Guess not.
I've been pretty tired this week. I'm thinking it is the 3rd week on Ibrance causing it. I still have hair. Feeling a little itchy a lot, but no rashes. No mouth sores. If this is the worst of the side effects, this is great.
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Hey Romansa, I have taken only 7 days worth of Ibrance and Femara..The second night I had a horrific and I mean horrific nightmare...The next day I looked on these boards and sure enough some ladies on Femara had reported the same symptoms....So I moved my med taking time to noon instead of evening...I am very careful to not take anything else that might be responsible such as that night I had taken an Alleve PM . Anyway I went to the oncologist today and they took my labs. I will find out soon if there is any impact soon...I am thrilled to have this med combination and have pinned lots of hopes on it. Good luck to us all. Thanks for starting this board...It gives me great hope to know that the experiences of the first few weeks are probably indicative of the full route on Ibrance and Femara..... Carolyn from Music City
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Good idea, Carolyn. I was hoping the nightmares would die off soon (pun intended). If not, I will move the dose to noon
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Is Ibrance not a chemo drug? And what is Femara? It is a hormone disrupter, right?
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O.K. just looked up Femara - hormone inhibitor - I think he meant since 3 other of these drugs have failed there was no reason to think another one would work? I have little say about what the "next step" will be these past 3 years and am now beginning to want to know my options and not just take the doc's opinion - I mean, he obviously knows more about all this than I do but my first inclination that women were more involved in treatment decisions and better informed and knowledgeable was when I started reading posts on this site. I have consistently run into resistance to answering my questions. One doctor even said, and I quote, "you are too smart - you are asking medical student level questions and it is threatening to your doctors". Well, I am beginning to give some serious consideration to my middle finger
as a response to that!0 -
Romansma, you might want to ask the doc about the dosage on the Oxycodone and whether you can lower it and still have it work (I hear that the dosage of the Oxy can sometimes be much too much for some people). Sometimes I cut pills in half since painkillers tend to knock me out, not sure if that's an option with the Oxy but I do know a couple of people who had to cut way down on it since it was way too powerful for them.
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I am on 5/325 oxy which is the lowest dose. I usually stretch it for 7 hours and all nite.
Apackoftwo, I should hope you are well informed, it is OUR life. Myraa
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Not sure it is too much, really need the pain relief. On Norco, they only lasted about 4 hrs and I wasn't sleeping well because I'd need to wake up and take more pain meds. I like that the Oxy is getting me through 7-8 hours. They are the 7.5s and if I don't get used to it within the next week, I'll switch again. I've learned to give things a coupleweeks before deciding. I hated Norco at first too. Right now, I hate pain and grouchiness more!
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totally agree
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Hope - sorry to hear about your pain, I hope they are able to give you something that works and doesn't make you miserable. I wish I had some wisdom/advice, but I don't...just sending best wishes.
I started my second cycle of Palbo/letrozole today. So far, my platelets and white counts are hanging in...they are low, but now low enough to reduce my dosage. My onc wants me to do a couple shots of neupogen just to make sure my white counts are in the clear. I'm a little tired, though that's such a subjective thing, mostly I feel a million times better than being on chemo. They ran my markers today and I'm cautiously optimistic they will be stable or improved.
Best wishes to everyone - love to know how you gals are doing.
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Romansma, I am sorry you are in so much pain and praying that you can get some good pain relief soon, and a good night's sleep.
I don't know what I'll do when I'm in need of pain killers since I can't seem to tolerate them well (and still need to drive carpools of kids). I guess I will need to learn about all the options soon.
I will be starting Ibrance/letrozole combo (letrozole alone didn't work, and neither did faslodex alone). Hoping the Ibrance will help, will keep people posted. I hear the new drug by Ely Lily is even better than Ibrance in trials - that it is taken every day (no off week) and that the white blood cells don't take as big a hit. I think it will be FDA approved in the near future.
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Thanks guys. Think I'm starting to get used to the Oxy. However, totally crashed yesterday. So weak, fatigued. Guessing my counts are diving in this 3rd week. Finding it hard to do anything. Anyone else have this experience towards the end of the 21 days?
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Hang in there Romansma! I do remember that when I first started Ibrance, I used to get terrible headaches and felt exhausted but as time went on (cycles) it slowly went away. You have been through a lot - give yourself permission to rest as much as you can! I found afternoon naps very helpful and now I only occasionally need them. Also I always found, and still do, that the last week of my cycle to be the most difficult! Exhaustion, red itchy rashes and nausea - most of the side effects appeared at the end. i hope that it gets better for you and wish you success on this drug!
SusanAnn
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hand in there rims baba. This too shall pass !!! Without pain preferrably.
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Good to hear this may lessen as the cycles continue. I'm still amazed that the side effect profile of this drug is so good. However, the last couple days have taken me out. Can't get out of bed today. Out of breath walking down the hall. Very achey. Weak. 3 more days and I'm off for a week. This will pass, yes! All the kids home this weekend. Timing not great but they are all enjoying each other.
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Romansma, week one down and I have had no SEs. Perhaps getting used to the oxy and the last week combo is doing you in. I hope I don't get too weak and tired last week, supposed to go see my son and DIL in Washington D.C. that week. Only time will tell, sure glad I bought travel insurance. Feel better all and let's continue the wonderful vibes of health to all. Hugs, Myra
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Five more days on my first cycle. I feel pretty good. My wbc are a little low so my o told me to do Neupogin for 2 days. I really don't feel tired. My appetite is a little less but I am ok with that. Getting my markers tested after completion of the first cycle. Praying this works works well on those of use use who have been been heavily pre-treated. Praying for everyone .
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Romansma- the last 3 days were pretty exhausting for me as well but I bounced right back in the week off. I told my MO I would try another month at the 125 dosage but if I got the same type of fatigue the end of this cycle I want to look at a dose reduction. It was like bad mono
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That's a good description, Lenn. Just really weak, tired. I shuffle instead of walk. Hopefully it lessens with subsequent cycles
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Romansma, thank you for starting this thread. I have 2 pills left of my first bottle. I too have been having funky dreams. So far, a bit of fatigue, but not much else. My bloodwork this last Thursday showed my wbc is low. So, onward through the fog. Prayers for everyone from Texas!
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First WBC tomorrow, keeping my fingers crossed. Do get fatigued in PM, don't know if it is the oxy or Ibrance.
Also very hungry in PM, anyone having this? Myra
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I actually have less of an appetite than usual. I seem to get full very quickly and then hungry again in a few hours. Get a bit tired at the end of the day, but nothing too much. Taking into account the side effects of some of my other treatments, this one is minimal and I will be very happy if this works and I can continue on this for quite a while.
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Just woke from a 2 hour nap. Still very fatigued, but not as weak. Weakness was worst on Fri and Sat. Wonder what changed. I have one more dose for this cycle. All in all I'm happy with the side effects too. Hope it works for a very long time. Oh, and haven't notice being more hungry. I lost my appetite on Afinitor and then gained 10 lbs taking Xeloda because eating helped with the nausea.
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Romansma,
Are you on palbociclib? If yes since when? Pm me i want to know everything and most importantly how you are doing. Hugs.
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Always get stressed starting a new med - Today will only be my 3rd day on Ibrance/letrozole combo, but after 2 days at least it's good to know there are no immediate side effects, so I feel more relaxed at least. Decided to take them at lunch time every day instead of dinner (I have also needed Prilosec for years since my 1st round of radiation, so I take that at dinner to spread it out), and I had no nightmares last night (the only unpleasant thing last night was a smelly skunk outside - surprised they survived the snowstorms, but apparently it is mating season, hope we don't have a family of them out there!)
I am not taking any painkillers right now (thank God radiation at least temporarily took care of the bone pain I was having this time last year, and I have no big lung pain yet although it has spread to the lungs as well, so I have not yet needed any painkillers since the radiation a year ago) - I wonder if maybe the nightmares or headaches some have are due to their pain med/Ibrance combination rather than due to the Ibrance?
Will have the blood test in 2 weeks to check the WBC count. I have failed both letrozole alone and faslodex alone, so I'm praying the combo works, will let everyone know how it goes. Good luck everyone, and hope it continues to work for as long as possible. Happy St Patrick's Day!
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I failed letrazole and fasolodex also. Hoping this combo works. First WBC today and xgeva shot. Maybe it will be green for St Patty's Day! Myr
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Im a failure on Letrozole and Faslodex too, so we all are lab rats on this combo hoping for good news! On the nightmares, pretty sure that is a Letrozole side effect. They seem to have calmed, so maybe it's just an initial reaction to the change in hormone levels. Spent another day unable to do much. Got my labs done, at least and will see Mo tomorrow. Looking forward to week off to gain no my at strength back!
Woody, I will message you.
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Almost done my first cycle and the only thing I notice is slightly less appetite, but not anything drastic. My energy level is fine at work all day, but sometimes I get a bit tired later in the day and am not motived to do much in the evening. I think if I could sleep better that would be helpful with fatigue. But all in all, not difficult at all. I'm just hoping for the combo to work. Femara worked for me to get me to NED for five years from 2003 to 2008, so I'm concerned with taking again. My onc says it could work again in combo with the Ibrance, so we'll see.
My situation is a bit different in that my onc wanted me to stay on Halaven at a lower dose until he sees if this combo is working. I'm thinking if the Ibrance does work as well as we hope it will, that things will be even better once I am off the Halaven.
Getting my TMs checked tomorrow so we'll have some idea if this is working. My onc does take them frequently since they have always been very reliable for me.
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Watching and crossing my fingers with you! Good luck with your blood results, Romansma and pearlady.
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Thank you Sandilee. Praying for all of us on this combo. Not really so concerned with the side effects since I've had much worse. Have also read that whatever side effects you have early on will not get worse. My main concern of course is that the combo works. Have been disappointed before with Kadcyla. Will post after my TM results sometime next week. For me this will tell a lot.
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At the MO now waiting for my Xgeva shot. Just finished getting a chest X-ray just to be sure for some shortness of breath and cough that causes a little chest pain. Hadn't heard, but this combo caused pulmonary embolism in about 2% of cases. I'm sure this is nothing, but better to be sure.
My fatigue and weakness was confirmed by low counts. WBC at 1.2 and ANC at .6. Red and Platelets down too, but can't remember numbers right now. I definitely need to stay out of crowds and away from sick people with these numbers.
Officially on a week off and ready for some quick recovery. I will do weekly blood draws for a few weeks to make sure they recover enough to keep going.
Thankful to have this treatment available to me and hoping we all get some encouraging results!
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praying for you hope. Hang in here. Week off time. !
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Romansma praying for good results from the chest xray and quick recovery from the side effects. Of course hoping that we all get good results from this treatment.
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Hello all! Just got back from a loooong day at the Oncology Clinic! So, I got confirmation that my weakness and fatigue is from much lower blood counts. My wbc is at 1.2 with ANC at .6. Rbc just over 3 and Platelets at 90. Looks like the Ibrance gave me my money's worth! But, nothing so low that I need to lower dose, so that's good.
My tumor markers were unchanged from last month. I call that a win since they've been rising for months.
I've had shortness of breath which could be explained by the Ibrance causing low blood counts, fatigue, weakness. But, I also have a little discomfort in my chest on the right side from coughing and sneezing that started a few weeks ago. Didn't think much of it since its spring and allergy season here in California. My MO said that there was a possibility of pleural embolism in the trials (2%) so she wanted to be cautious and had me go for a chestX-ray. Said she would call if they see anything.
My calcium came back up to 9, so I got my Xgeva injection. When I've had it at this level, I've had flu like symptoms for a few days. Guess I'll gear up for a slow weekend! Netflix, take me away!
I will be doing weekly blood draws for a while until we are sure I'm tolerating the Ibrance and not neutropenic. All in all, I'm thankful to have this option for treatment. Things could be way worse, so I think I will quit my complaining and take a nap! Enjoy your afternoon!
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hope cxr is clear and u bounce back quickly!
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X-ray is clear! Now, for some recovery
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great news
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Terrific news, Romansma! Hope you get your energy back soon. A friend who read the results of the PA study said that people benefitted from the Ibrance even when the doses had to be lowered due to low WBC counts, so it's good to know it can be effective even in lower doses, and for those who already tried hormone therapies. Also she says the Eli Lilly drug (taken every day, no week off) has been the most effective of the 3 similar drugs (Ibrance, LEE01, and the Eli Liiy drug) that are in trials and does not lower the WBC as much as the other 2, so things are improving all the time (however, I also feel very lucky to have this Ibrance right now and hope everyone can get it since it is the only one FDA approved so far).
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IN ONLY 1 WEEK MY NUMBERS ARE DOWN! Blood counts are stable! Prayers for all this is working. We all deserve all the good news we can get! Myr
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Good Morning Ladies! I just finished my 1st bottle of Ibrance. I'm taking with Letroxole. My tumor markers went from 185.4 to 166.4. Hallelujah! My white blood count is low at 3.43. Other than that, I got Zometa thursday as well and that knocked me for a loop. Extremely tired, slept what seems like 48 hours straight. The only thing I have noticed is a drop in appetite. Pretty sure the zometa was the culprit of the extreme fatigue. ANYWHO, looks like its working so far, keeping my fingers crossed. So glad to have all of you to converse with. Prayers for all of you!
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Love all this positive news!
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I'm happy I found this thread. I will be starting tomorrow evening when I get my first shipment. Goodluck to everyone!!
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Romansma so happy for the good news. Now prayers for everyone that this combo works.
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Hey gals, well, my tumor markers went up a few points after round 1. Since the increase was small, my onc is saying I'm stable and we're going ahead with round 2. Fingers crossed.
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Nancyh. Keeping my fingers crossed. For you and for all of us.
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All good news. Anyone else seeing their counts ultra low? I wasn't anywhere near this low on chemo. Red counts falling too. A bit worried what cycle 2 will do starting with such a deficit
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My counts were a bit low this week and I opted for the neupogen for two days. I am getting the counts checked again tomorrow and hoping that it has done its job. Just finished my first cycle last night so hoping all is good by next week. Definitely looking forward to a week off. Getting my TMs checked tomorrow and really hopeful.
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I get bad bone pain with the shots. May have to resort to them if counts keep dropping
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Have not had that. I guess I'm so used to small aches and pains that I haven't noticed anything different.
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NancyH, glad you are stable and can keep going on Ibrance since the side effects seem reasonable as long as the blood counts don't fall too low. Good luck with your next round.
I don't know if Neupogen is like Neulasta (took Neulasta shots when I was on chemo - small shot to the leg, not a big needle). I don't remember getting bone pain from it - that was 6 years ago, but I'd remember if it was anything major and I don't remember any problems with Neulasta (hoping that it will be a similar shot if my WBC are low after next week when they check after 2 wks on Ibrance).
I'm praying this drug will work for everyone, and the results sound promising so far.
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Yeah, I got intense back spasms from Neulasta and bone aches. Wasn't fun, but it worked.
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No, back spasms don't sound fun - never had those, just had terrible leg and toe cramps at night for a long time, but I don't know if that was caused by the Neulasta or the chemo or what. Anyway, you're right, the Neulasta did work to bring up the WBC counts.
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Never had Neulasta, only Neupogen. I haven't had any issues with Neupogen. I'm not sure what the difference is between the two. Will have to find out.
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I believe a new generic for Neupogen has been approved to lessen the cost. Wonder if the side effects are any different.
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Hope - have you tried Claritin with neupogen? It isn't perfect, but helps quite a bit with the bone pain. I've had dozens and dozens of neupogen/neulasta shots over the past 5 years and can usually tell a difference with the Claritin.
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i am now 16 days on Ibrance and Femara. I have found taking the meds midday with lunch has spared me nausea. I do have a little difficulty with sleep but that I can handle. Now to see if the Tm's go down and the next PET shows regression....I am so thrilled to be on this med combo and hope for the best..In addition, it has not affected my energy. Carolyn from Music City
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I am 11 days in and so far my energy seems somewhat better. Yesterday I was out and about from 8am til 4 pm without my usual nap. I take my meds after dinner and have been fine with nausea. Sometimes a bit of nausea in the morning when I awaken. As I stated TMs and alkaline numbers down. WBC also down some. MO wants blood work every week. I hate the stress of all these numbers. Guess this life in my world now.
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Good to hear you are all doing so well. I will have to remember the Clariton if and whe I need a Neulasta injection. I had good energy untill about day 17-18 of the cycle. It surprised men becauseI had been feeling so well.
I picked up some Zinc and B complex today to give my body a fighting chance on the counts. I'm feeling better, but not exactly energetic yet. Still hard to get anything done.
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Hello.
Still hanging in, sad little platelets and all. Actually they are better than had been by far. 56 this week. Have a new development, big bad thrush infection in my mouth. White gunk everywhere. Not pleasant. Doc put me on the swish and swallow mouth wash as well as Nystatin. Taking awhile to respond tho. I hate thrush infections, painful when I try to eat anything. Oh well, onward and upward
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Wow, Judie, I'm sorry. Your poor body is under attack. Hope the thrush calms down soon. Too much!
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I started using Sonic care toothbrushes on my first round of chemo. Keeps your mouth super clean and don't forget to sanitize your toothbrush in straight listerine after you brush. Germs will stay on your brush for 48 hours. Hope you feel better really soon!
Romansma, I bought zinc too and started eating lots of green leafy veggies. Hoping to fight off those dropping blood counts. These posts are so helpful! Myra
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Judie, Sorry to hear about your infection and praying things improve for you.
Thanks everyone for all this useful information, it is good to have an idea of what to expect on this drug, makes it less stressful to at least know what might be coming. I have only been on the Ibrance for a week, so I don' t have much to report except that the red bumps/bleeding and itchiness I had on my arms and legs from the Faslodex have so far improved a lot after being off the Faslodex a while and on the Ibrance/letrozole (will see what happens after another week, though, since some have said it's the Ibrance that causes red bumps for them).
Lung pain seems to have moved to the other side, not sure if it's how I'm sleeping, hopefully it is not spreading. I think exercise improves it, need to motivate myself to go out and walk. Snowing again here, can't wait till we get some Spring weather!
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Hi again, Judie. I was half asleep when I responded to your post. I had a thrush infection last year when I was having radiation to my spine and hips, along with starting Afinitor. Doc gave me Nyastin, but I also wanted to share something I came across that helped. Coconut Oil. I use it in smoothies, cooking, etc., but I also tried Oil Pulling with it. You can google it if you a are unfamiliar. Also, probiotics to help restore balance in your digestive tract.
http://www.thecandidadiet.com/candida-fighting-foods.htm
Myra, thanks for the reminder on greens. I juice and make smoothies, but my juicer is broken and I've been too weak to shop as much as I usually do for fresh greens, etc. think I will head over to Amazon to find that broken part!
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Nancy how many doses of Claritan do you take with the Neupogin ?
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Pearllady - the dose of Claritin depends. For neupogen, I'll usually do one 24-hour tablet for each day that I have a shot. For neulasta, I will take one 24-hour tablet daily for maybe 4 - 5 days. One thing I've noticed, it seems like the lower my counts are, the harder the neupogen/neulasta has to work and thus the pain is more severe. Some rounds are totally debilitating, while others are pretty mild.
Judie - I'm so sorry to hear about your thrush, that is so miserable! I had a mild case of it on taxotere a couple months ago and it was absolutely awful. I hope it gets cleared up quickly.
So, is anyone else tired? I feel pretty wiped out.
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Hi everyone,
Yes, NancyI would agree that tired is definitely the name of the game over here! I have spent two full days (and nights) in bed, mainly sleeping. Just getting up to shower. Thank you all for the advice and comments re: things I can do about thrush. I will definitely follow up. I don't know anything about Oil Pooling, Romansmama, but I will google it for sure and give it a try. I do like coconut oil in various things. Hopefully it might help. Might see about it in Jamba Juice? I do hope you can start to feel better too. In some ways this Ibrance is a tough one but in others it is not so bad. When I think back to Taxotere and so forth, this is definitely more doable.
I have also had Neupogen problems, and have found Claritin to be helpful. I mainly used the dosage schedule on the bottle for bone pain relief. Be careful, you can get too much Neupogen and it is very unpleasant. Count how many days they are giving it to you. After that I have always had to have the dose adjusted to less than I probably would take before. I don't know, there have been so many things with these various drugs, I tend to forget half of them.
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Glad you are getting rest, Judie. Hope that thrush resolves soon. I had a tough weekend with my very empathetic dog, Micki Bird. She was vomiting blood, lots of it. Blood from the other end too. Spent 6 hours in emergency with her Saturday night and back again yesterday. Thought I was going to lose her. She's doing a little better, but not out of the woods yet.
I haven't gotten all my energy back yet, but some. I was up most of the night Saturday night, so very tired. I woke up this morning soaked. Hoping it isn't a fever. I have had a headache for a couple days too. I think it's SE from the Xgeva injection since my calcium hasn't been optimal.
This is my girl hanging out with me in bed this morning. Can't imagine losing her.
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beautiful dog. I love my dog too they are so full of unconditional lov
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Romansma hope your dog is okay. What a beautiful girl. Do they know what is causing this? We have a dog and eight cats, so I know the attachment and love that these family members provide. One of our cats, Lotus, is 13 years old and is going through chemotherapy for breast cancer. They say it will give her another quality 12-16 months. Can't believe that I'm sharing this experience with one of my cat family members.
On another subject, does anyone have nauseau with the Ibrance? I am really not that tired, but I find my appetite is less than usual. Not really nauseau but more of a yucky feeling sometimes.
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The same with me. Not really tired but kind of off sometimes. Smaller portions sometimes and very hungry others
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Thanks Myra. Yes off is a good way to describe it. Sometimes I actually feel kind of a yucky feeling when I am hungry. I feel better when I eat, but then if I eat too much feel off again. But if that's the worst I get, I'll take it.
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Sorry about your cat, Pearlady. Not sure If I would sign my girls up for chemo (we have 4 dogs, 3 labs and a Jack Russell), all based on how much I hate chemo. It's so hard because we know the medicine is to help them feel better, but all they know is that they
feel bad. Hang in there, hope your cat does wellThey couldn't figure out what was going on with her. I guess there are many things it could be. She had blood tests and X-rays and nothing showed up. Good and bad. At least there were no huge tumors causing it. No big ulcerations are blockages either. She is very tired, but seems she is getting a little better.
I haven't noticed any appetite changes. I lost weight on Afinitor because I was never hungry. Not happening on Ibrance. Also, a little nausea,but I was attributing that to my pain med change. I'm taking the Ibrance right after dinner each night. I think it's important you take it with a good size meal. The trials confirmed that. I take it at night so I can sleep through any nausea. Not sure if that works, but seems to be.
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Thanks Romansma. I have been taking the Ibrance before bed, but I think I will switch to taking it with dinner. Maybe that will help.
I actually wasn't going to do the chemo for Lotus, but then after speaking at great length with the vet and speaking with other people, we decided to give it a try. The dosage that they give is apparently much less when taking body weight into account of course. Cats do very well with chemo, probably better than most people. After her treatment she has a bit less appetite the next day and then two days later is back to normal. Interesting that they also don't lose their hair. I lost all my hair on Adriamycin and Cytoxin, but not cats.
Hope your dog is doing better.
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Sorry about Micki Bird, what a beautiful dog and looks very healthy, hopefully it is not serious. Can't imagine a little cat having chemo, that sounds tough.
I am taking the Ibrance at lunch and have not had any nausea. I am not that hungry at dinner but maybe that's because I cooked it and am sick of looking at it!
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what are alkaline numbers?
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In what context, apackoftwo
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I have mild nausea in the morning starting about half way through. I drink a Kavita pro biotic drink and it usually takes care of it. I still have the cold I started at the beginning of this cycle. I had to have early blood work and a chest X-ray but everything is OK. There is a nasty bug going around, I just can't seem to shake it. One good thing to report, my energy is much better this cycle. Only 3 days lefts and I have not had any bad fatique like last cycle.Good luck with your "puppy" , Romansma. I hope everything is OK with her
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not sure, I read a post where someone said their alkaline numbers were being tested?? and I had never heard of it. Wondered if it had something to do with what many of the natural therapies say about keeping the body in an alkaline state to promote healing.
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Hmmm, Part of the cbc is Alkaline Phosfatase, maybe that is what was being referred to? If so, I believe these are in reference to the liver function, mostly, but also sometimes refers to bone disease, as well
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I am the one with the alkaline phosphate being tested. It has to do with your liver functions and your bone disease. People with bone disease may have elevated levels of this in their blood. My MO tests for it when I have my CBC. it had been very elevated, but this time had come down almost 100 pts. More blood tests today, the black and blue from last week still has not gone away! Hopefully CBC is stable. Off to drink water to pump up those veins.....cheers! Myr
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Thanks Romansma and Myra 1211 - I know my doc is testing my liver enzymes (still normal even with met) and maybe that is a part of it - I do worry about my bones as I have mets in spine, ribs, pelvis - they are stable right now - but I cannot take Xgeva or Zometa due to very bad reactions to both.
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Had some good news today. Finished my first cycle of Ibrance/Femara last Wednesday. As of last Friday, my TMs, which are always very reliable, have dropped almost 100 points. Have slightly low platelets. RIght now he said to continue with next cycle at full dosage. Keeping my fingers crossed for all of us.
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So happy you had such good results. My CBC today sucked after 2 weeks, took me off Ibrance for a week to see if they recover and then will start on lower dose next week. This stress is the worst!
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Myra
My WBC was slightly low last week after completion of my first cycle of Ibrance, so I did two doses of Neupogen. Today they were normal. I really haven't had any side effects with Neupogen, so I will continue that as needed. I am concerned with the low Platelets as I don't want to have to go on a lower dosage of Ibrance and I don't know of anything to take for platelets other than some herbal supplements. I've contacted my holistic pharmacist to see if he can assist. For right now, my onc wants me to start my next cycle at the same dosage, but I'm sure will be watching the platelets.
It does stink having to worry about all of this.
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Good to hear the TM's were down. I heard from my friend who read the results of the Pennsylvania study that the Ibrance was effective even for those who had to drop the dosage.
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Thank you so much 3Holly I needed some cheering up
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Wow, Pearlady, Awesome news. Hope your blood cooperates!
Myra, I'm sorry. I worry about this too! I had my blood drawn today and started on cycle 2 tonight. Do you mind my asking what your counts were that caused him to lower your dose?
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It's true, my friend is a great researcher and found out about the Ibrance for me and read the Pennsylvania study. Try not to get stressed, I really believe that dealing with stress is key and I wish I had learned how long ago - what helps me is getting outside, walking, listening to music, eating right (colorful veggies and greens), and reading a good book to get your mind off it and get to sleep (I just started "The Boys in the Boat "- about the American crew team that won the1936 Olympics).
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Hope my WBC WAS 1.6 and ANC 0.6. The weird thing is I don't feel exceptionally tired or weak. I feel like my body is failing me on clues that something is wrong!
3holly, my TMs were down after only one week, so I had great hope. Accdg to RN, they expect this and we will work it out. I am very blessed to have an MO and RN who really care about me and are watching closely.
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Pearlady, a holistic pharmacist? I can't even find a naturapath in Ft. Lauderdale. Would you mind sharing some of his insights with us
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So, Myra, you were 2 weeks in? My counts were lower, but towards the end of the 3rd week, so no change in dosage. I am hoping our bodies adjust a little and don't keep taking such nosedives in blood counts.
I've been having pretty intense night sweats during my week off from Ibrance. I wake up soaked. I've been thinking it's the Letrazole, but I've ever reach reacted like this before.
Off to the races on cycle 2
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Hope, yes it was down after 16 days.
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I hope it does better this cycle. We didn't check mine mid cycle, so no way of knowing. I was at 1.2 wbc and .6 anc on day 20. Seems this combo hits the counts hard and that may be the downside of it. I have high hopes for it, but it's hitting blood counts as hard as IV chemo
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Myra my onc is a traditional Dr. who also treats with alternative/complementary. He works with a pharmacist in NYC where his patients obtain their supplements. The staff there is very knowledgable and helpful. For example, my issue with this combo is apparently low platelets. I had this issue on Abraxane also and he recommended Ashwaghanda twice a day which did help. For this combo he also recommended I add Astragalus and Vitamin C. He has been helpful in recommending other supplements for various issues I've had in the past. I will PM you the details. He will ship overnght if you order a minimum amount. Not sure what the amount is but not very much.
Starting my second cycle tomorrow and hoping it continues to work with minimal side effects. Best to all.
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Thanks for that info, Pearlady. Keep it coming. I have astragalus, but haven't been taking it. Time to add it back in to the pill box
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Romansma he said to take it with Vitamin C 1000mg twice a day. I know that Vitamin C helps for the platelets since when I had issues with nosebleeds in the past, the Vitamin C stopped them almost instantly.
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Pearllady - congrats on your TMs, that is great news!!
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Thanks Pearlady, I will do that and see how it goes. I had my blood drawn yesterday and will have it done again Tuesday. Hoping to see some improvement.
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Thank you Nancy. Hoping it continues for all of us.
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Hi Myra 1211 - as I posted earlier I saw a new oncologist last week - it was a fairly quick visit since she was just fitting me in - she did bring up Ibrance and I mentioned the side effect of low white blood count - she said it was true and the major thing to watch but she also said that even with the low counts not one person in the study got an infection. Wonder what is up with that?
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Hi Pearlady - I am interested in the herb ashwaghanda as I have heard that it is also helpful for fatigue - I am still taking Xeloda and the fatigue is a monster - but, my concern is hearing that certain herbs are contraindicated to breast cancer - I would assume since this is a holistic pharmacist working with an medical onc that it is safe to take. I have ER+.
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Thx apackoftwo very interesting. I am feeling fine as stated which really confuses me. Myra
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Myra, were your red counts low too? Maybe that has something to do with why you don't feel the low counts.
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My RBC counts were good, platelets were low
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My friend who has read the results of Ibrance studies told me not to have Grapefruit Juice with Ibrance, but said she didn't read about any other food that's incompatible with Ibrance (and I'm not sure if the grapefruit juice warning applies to every patient or what, but I'm avoiding it). I am sure I will soon need Zyrtec for the pollen in May (Claritin doesn't help much since I'm severely allergic to pollen and need to prevent sneezing even more now since it hurts lungs to sneeze) - I'm hoping Zyrtec will be OK with the Ibrance since it's similar to Claritin.
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Apackoftwo I have discussed the Ashwaghanda with my oncologist and he also recommends it. It helped me during Abraxane to manage the low platelets.
I was also told to avoid grapefruit by the Pharmacist at CVS Caremark before receiving my pills. I think this applies to everyone. That was the only food they said to avoid. I remember also being told to avoid grapefruit when I was taking Tykerb.
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Hi ladies I have been in the phase 3 study of Ibrance/faslodex for over a year. Just wanted to mention that I had only a mild cold once even though my WBC was very low at times. I have been to sporting events, full shopping malls and have never gotten ill. So apackoftwo your Onco is correct! Also wanted to mention I am not allowed to take any antacids as they can interfere with absorption. I strongly suggest that you check with your Onco before you take any OTC or "natural" herbs/medications. Everything I put in my mouth needs to be approved before I can do it! Better to be safe and get the full benefit of Ibrance. I wish all of you the best of health. Its a great drug with very few side effects.
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Very interesting about the blood counts. I have to mention this to my MO. Already received the 100 mg dosage to start next week. I was also told to avoid grapefruit. Don't know why.
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Grapefruit and juice are contraindicated to many drugs - it seems to have some kind of interaction that makes a drug more potent in the system.
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SusanAnn,
Good to know you have had success with the drug and stayed healthy even with the low counts.
I hadn't heard anything about the antacids (even since radiation,I have needed daily prilosec and sometimes TUMS to sleep at night - hope it is not blocking the Ibrance) - will ask at my next appointment but don't think I can avoid the Prilosec.
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I called CVS Caremark yesterday and spoke to a pharmacist regarding the antacids. They told me that yes you should avoid antacids. Not sure about OTC such as Tums, but definitely all prescription antacids. To be extra cautious I am having more yogurt and avoiding the few foods that sometimes annoy me to avoid taking anything.
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Hi everyone! I am still in shock about my dx. My cancer is rare because I do not have a tumor. Lobular carcinoma cells in lymph nodes and Pet scan revealed bone mets (femor, ribs, spine, iliac and sacrum). I just finished my first 21 days on Ibrance with no side effects. Nuetrophils absolute has not gone below 1,000 so I can stay on 125mgs even though my wbc is dropping from 7.9 down to 2.5. I have had 3 months of zometa IV and my bone pain has finally subsided. Hope this new drug helps us all!!
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Great news Riverbelle! Not sure there is a definite rule on the neutrophils. I dropped to .6 and I am still on the 125 dose. Hoping I don't drop that low again this cycle.
Thanks for the info on antacids, I hadn't heard that. I don't take them usually, but would have if I felt the need. I hadn't heard the grapefruit juice thing either, but I stay away from that because it generally has an amplifying effect on many drugs.
So, I have an observation after starting my second cycle. The vivid/intense dreaming had tapered off during my week off of Ibrance. Last night was day 2 back on Ibrance and wow, intense dreaming all night! I wonder what that is? Maybe it's the Ibrance making the Letrozole more effective? Whatever is is, I've got some intense movies going on and then wake up soaking wet from sweating, what a night!
Thanks for sharing all the great information, everyone! This drug is so new, it's nice to have a place to share and get information!
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Hope, did you find out what your blood counts were before starting cycle 2? I am just hoping my MO is not changing me too quickly. He has me doing a CBC every week. My arm with those "great" veins look like they have been thru the war. Myr
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No, don't know yet. I see MO next week. I figured she would call if they weren't good enough. I will do another draw before I see her. Yes, the weekly draws are taking a toll on the ONe vein that still works!
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I have been told not to take the antacids within 3-4 hours of taking the med - Xeloda, Ibrance, etc. Something about the minerals in the antacids interfering with the absorption of the drug. But, that it doesn't stop the drug from working once it is absorbed. I am going to check this out again with my doc. Also, have heard that Prilosec is not technically an antacid but a drug that blocks the body's production of stomach acid, so it is O.K. This can get very confusing, yes? I don't take antacids, but sometimes use a teaspoon of baking soda in 4-5 ounces of water at least 6 hours from Xeloda dose. Works well for me.
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SusanAnn - do you mind sharing the results you have gotten taking the Ibrance for a year? I am assuming good since you are still on it. It is the next step for me so I am wanting as much feedback as possible.
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Hi a pack of two - please keep in mind that along with Ibrance I am also getting Faslodex injections. This drug for the most part has kept me stable from the beginning. I have had progression in some areas but also regression and according to the Oncologist it kind of evens itself out. I have had two nodes come up in the supraclavicular area (neck) that were not there before. This may not be the case for you. I have heard of many people have much better results than I have, but as my oncologist says he would be happy if I stay stable forever! As far as side effects go - at the beginning I had very bad headaches, nausea, chills and hot flushes along with severe backaches. Fatigue was the worst. The backaches went away when I discovered (from this site) that the injections were not being warmed properly. Gradually (over a period of seven or eight months) I started feeling so much better, almost like my old self. I still have very bad headaches at the back of my neck on the right side which I feel might be the Ibrance. (MRI was clear). I got scanned every two months and after a year I am scanned every three months provided I have had no side effects. I have a spontaneous fracture of my right heel and no one knows why. I blame the Arimidex I was on for two and a half years. I have a bone scan and a CT coming up in a couple of weeks. Hopefully I will continue to remain stable and stay in the study.
I hope I answered your questions. If not feel free to ask
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I was encouraged to see some of you got Ibrance approved even though you had already been on ALs.
Any one get approved thru Blue Cross Blue Shield Anthem Federal and Medicare? ONC has gotten 3 denials on other patients and ins already. So wanted to wait a while should be easier. Thanks Best wishes to you all
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I have heard only no on Medicare for decreased payment. Private insurance only. Big Pharma...UGH. Myra
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Hello everyone, I have been stalking for the last 3 weeks.When Navlebine fails me the next med for me is Ibrance and femara . Got the official word for me yesterday, after changes in ct and elevated TM"s. So as soon as insurance ok's it and the little bottle shows up at the door I will be joining you all.
Have appreciated all the information and sharing.
My best to you all and I hope this is the miracle we have been waiting for.
Redroan
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Apackoftwo and everyone, Thank you for that info on prilosec and antacids, good to know. I will ask my doc his opinion also, and let people know what he says, but I think what you say makes sense - take it several hours later if needed, so that it doesn't interfere with the absorption.
Good luck to those who are trying to get approved - if they deny it, you can ask your doc to appeal it as long as the doc thinks you are a good candidate for the drug.
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3Holly, I was on the Palbociclib Feasability trial. Prilosec is prohibited (no proton pump inhibitors). They made me switch to Zantac, which does not interfere with the Palbociclib. They communicated with my PCP regarding options. Tums were allowed as well. Hope this helps.
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Hi SusanAnn - I was on Faslodex for over a year and had headaches that got worse every month - very, very bad and it is the reason I stopped it - not because it failed.
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Myra1211 - not sure I am clear about your post (it's early!)
did you mean that medicare is not approving the Ibrance - no way I could afford it if they don't pay for it. 0 -
Yes when I called for the Pfizer discount, only private insurance is eligible. At first I was told it would cost 9000.00/month. Medicare and Medicaid is not eligible for the discount program. There are other programs you might qualify for. Your MOs office should be able to help you. When I heard the price, I freaked. Myr
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Medicare part B is paying for my Xeloda because it is a chemo drug not available in infusion form - is Ibrance considered a chemo drug I wonder?
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Sorry, I have no idea
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Apackoftwo, My doc said Ibrance is not a chemo drug.
Daisylover, thanks, I am going to e-mail my doc since he didn't mention the Prilosec. I am at Dana Farber, was your trial at Dana Farber?
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I believe Medicare is covering Ibrance now. It took them a little longer, but should work now.
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apackoftwo - where were your headaches located and were they every day?
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Romansma - Ah, big sigh of relief
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Hi SusanAnn - they were mostly in my forehead and top of head but very bad and the pain would make my neck and shoulders tighten up and be sore and painful too - not every day - in the beginning maybe once a week but progressed to several a week - my docs say this is not a usual response/side effect - part of my frustration in dealing with this has been that the side effects I experience are often not what everyone else is having - I have also taken a break from Zometa due to side effects - seems my body doesn't like the bone meds
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Oh Romansa,
Please keep us up to date on your beloved canine pooch...I truly understand his health is vital to your rest and emotional health...Wish you the very best . Carolyn from Music City
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Ah thanks for thinking of her. She seems to be doing better. She's still on medication and I'm watching her careful, but I think she is recovering. I'm so relieved!
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I start on Ibrance & letrolzole tomorrow, after aromasin and then Faslodex. Great info from all you ladies...... Here's praying for all of us....
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Welcome GDG. Be sure to take it with food, otherwise, it can cause nausea.
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I have taken Ibrance for 1 week and Femara for 9 months. So far there are no side effects. Has anyone noticed hair loss?
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I have Medicaid and they are covering ibrance. The Pharmancist also explained it to me like it was a form of chemo drug. I hope everyone gets it covered.
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I am so glad to hear it is now being covered by government insurance. Welcome GDG and good luck. Duck 1255, have not noticed hair loss, but since all this started, it is definetly not as full.
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Daisylover,
My onc says it doesn't matter whether it's prilosec, tums or zantac, but try to take it 12 hours away from the time I take the Ibrance/letrozole. Interesting that we are both at Dana Farber, but you got completely different info (you said they told you no prilosec whatsoever) - also Packoftwo said the pharmacist says only 4 hours gap. Anyway, I have not been following the 12 hour thing since I didn't know about it, so hopefully it was not totally blocked for these first 2 weeks.
Prilosec is a time release antacid,so I wonder if it releases for 24 hours or 12.
I will now have to switch to taking the Ibrance either morning or night to get the 12 hour gap. I had been taking it at lunch which was working out well since I don't really eat breakfast and dinnertime can be hectic. Wish I could get off the Prilosec, but I have needed it -especially at night to sleep - since my first radiation treatments, and where I usually take it late in the day, not sure if a switch to the morning would prevent it working at night when I most need it.
Good luck to those who are starting out!
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3Holly, yes, I did the feasibility trial at Dana Farber, with Dr. Mayer. They were very thorough. The trial paper work refers to proton pump inhibitors but does not explain how they interfere... I can email you a copy if you would like.
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That is good to know about the prilosec, I take it twice a day. Guess I will have to visit with Onc about that.
I am in hopes I hae been approved. CVS pharmacy called yesterday but I was at work still.. So still waiting!
Redroan
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Akevia - how is it working for you?
I'm not on Ibrance, just Faslodex and Xgeva, but am hoping it is a viable option when/if the Faslodex stops working, so I'm stalking all of you with dedication.
Thoughts and prayers for all
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Can any CVS Pharmacy get Ibrance we were told it had to be a specialty pharmacy. My first came from Cleveland Clinic's Pharmacy but our local CVS would be a lot more convenient
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I was told the same. Mine comes from a specialty pharmacy too
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Pretty sure it needs to be a specialty pharmacy. I know Afinitor was specialty and I'm sure Ibrance is the same.
Happy Sunday Funday, everyone! I have a houseful of boys that were up at the crack of dawn. As soon as my painpills kick in I'll be flippin' flapjacks for the guys!
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Have fun Hope. I once had a sleepover for my youngest son, he was 10, he's 27 now...LOL. 15 boys, blankets on the floor, movies and popcorn and up at dawn running around! My neighbors weren't happy, but I loved every minute of it. Myr
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Wow, 15! You are much braver than me! Six 10 an 11 yr olds. I'm getting too old for this. My oldest is 23, so we've been at this for awhile! Still, feel grateful to be here for another celebration!
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LOVE IT!
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Hi everyone,
Thank you, Daisylover, for that info on antacids/Ibrance.
Per Daisylover who is on the Dana Farber feasibility trial ), protein pump inhibitors (i.e., Prilosec) are prohibited, at least on that Dana Farber Ibrance feasibility trial. However, Pharmacist is not prohibiting it nor is my oncologist - however, I think I am going to try to go off the Prilosec and try the Zantac in case.
Here's what the pharmacist at Dana Farber said:
Prilosec : peak release is within 1st 6 hours - but it's in the system for 24 hours and IS A PROTEIN PUMP INHIBITOR (so prohibited on the trial). My doctor says it's OK but should be spaced at least 12 hours from the Ibrance.
Zantac: 1/2 leaves in 2-3 hrs and rest is over 8 hours or 10 hours max - it's NOT A PROTEIN PUMP INHIBITOR AND SHOULD BE OUT OF SYSTEM IN 10 HOURS (so I think this might be a better option if it works?)
Tums: calcium - they bind to a lot of drugs, so should space at least 4 hours apart from Ibrance as well. She couldn't say how long they stay in your system.
IN CONCLUSION: Although I am still not sure if there's a real difference, I don't want to block the Ibrance so I will try the Zantac instead of Prilosec since it only stays for max 10 hours (prilosec is 24 hours and TUMS is unknown) and I will take the Zantac at night since problem is worst at night. Hope it works as well as the Prilosec.0 -
My Dana Farber MO made me go off Borage Oil - which my naturopath had me on since I was in treatment. That was per Pfizer. Not sure why, but am going to ask on my next visit. I take a host of supplements and she ran them all by the pharmacist at the company and that was the only one they said NO to.
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Terri-c so far so good for me with no side effects. My white count is holding up good so I hope it does the job of getting rid of the mets. My prayers are with you also!!
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So glad you are still doing well. My platelets are still too low to restart. More tests Friday. Anyone have any magic to raise those numbers? WBC is better Myra
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Lenn can you please share what supplements you take that were approved. I did run my list of supplements by the pharmacist at CVS Caremark and he advised that they don't have information on many of he supplements since they were probably not tested. I also take a lot of supplements and am wondering if all of them would be approved. Thank you so much for your information.
Myra for the platelets I take Ashwaghanda, Vitamin C and Astragalus. These were recommended for me while I was on Abraxane and do help with the platelets. I ran these by the pharmacist and he thought they were okay, but as I mentioned above, I'm wondering if they have complete information.
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Shoot, Myra, sorry to hear you are still too low. Need to get my butt up and get to the lab this morning. Should have gone yesterday but just too darn tired! I could lay here all day and sleep! Definitely fatigued. Night sweats are still in full swing. Last night, I was Britney Spear's lead babysitter.....so nightmares are improving slightly
.I need to come up with a few good pranks to pull on my kids for this April Fools Day. Any ideas
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Hope do u mind sharing ur numbers with me? No night sweats just face flushing, and shoot I would love to be Britney Spears! Myr
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Hi everyone,
I am 2+ weeks out (3 pills to go after today) and just got yesterday's blood counts, so I thought I'd check in. I don't know anything about blood counts (will need to learn soon), but the nurse says they are sort of low but she isn't worried since I will have a week off soon, and it looks like I can probably keep going on the Ibrance for another cycle, but I suppose I'll find out for sure at the next visit April 8. I imagine they will check again when I have the Zumeta and maybe they will check the tumor markers (since she didn't give me those, I guess they only checked the blood cell counts). I am rather tired, but I'm happy that the itchy red bumps have disappeared from my arms and legs since I stopped the Faslodex. Some hot flashes but not much, but no other side effects to report so far. Happy April Fools Day, thanks for reminding me - yes, I will have to come up with a good prank!
Here are the counts:
white: 1.7
hemo: 11.3
hematocrit: 33.7
platelets: 237
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Thank u Holly. My problem seems to be the platelets at only 94. They are not rising enough so we will check again on Friday. Myra.
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Myra, I will be praying for those platelets to go up - good luck on friday!
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Thx Pearlady for your suggestions. I ran these past my MO and he advise me not to take anything, since at this point we are guinea pigs and they dont know what will interfere and what won't. I am not very good at being a "do nothing and see what happens" kind of gal, so this is really bothering me. I do not even know if my MO knows what to do next. Now he is thinking that maybe I need a bone marrow bx, but I never had a problem with platelets before. All I know is I hate breast cancer. Myra
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Just left MO office and my counts are back down. WBC at 1.2, ANC .7, and Hct 10.1. On my week off all these numbers had recovered, so it's definitely the Ibrance hitting them hard. Since there was no reports of infection, even with super low counts, we are going to keep going. I'm only a week in to the 3 week cycle with these counts. Can't imagine where I'll be in 2 weeks. Oh well....better be killing me some cancer cells!
Myra, do you know what your platelets were before you started? Hope you get a handle soon. Really want this to work for you!
K, off to have lunch with Ashton Kutcher.
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Hi Hope, platelets were in the 200 range. Lunch with Ashton Kutcher? Can I come....LOL
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Pearl Lady - right now I am taking Kelp, Ubiqinol-QH, Riboflavin, Niacin, liquid K/D... All approved by the Phizer. I am sure if you contacted the company they might be able to help you with information regarding any supplement that might be contraindicated. They want this drug to work and they want people to stay on it. As I said, my DF MO just ran the whole list by them before I started the trial. I was taking 4000 mg of Borage Oil per day which they said to stop. I just spaced out and forgot to ask why?
I am about to go see my naturopath and see what he reccomends taking to help with blood counts and immune system while on Palbociclib. I will then run that by the triall Dr. And share whatever information I get with you all.
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So disappointed that my entire blood work details are in the basement after one cycle. I had to have more labs today and hold off with the Ibrance. My labs were much like Romansa's . so disappointed. However, I feel fine Carolyn From Music City
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So disappointed that my entire blood work details are in the basement after one cycle. I had to have more labs today and hold off with the Ibrance. My labs were much like Romansa's . so disappointed. However, I feel fine Carolyn From Music City
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Thank you so much for your great info Lenn13. The info here is invaluable.
Carolyn, you and I seem to be having the same situation. Yet some have been able to continue on and others not. Let's just hope for the best.
Thank you all. Myra.
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I think our MOs are trying to figure out how to read these counts since Ibrance is so new. If we were getting these numbers on many of the other treatments, it wouldn't be good. However, my MO and her colleagues seem to think that these lower counts aren't as dangerous as they look on the surface. I guess time will tell. I'm wiped out tired daily. Of course, I'm up at midnight because I fell asleep at dinner time. This one is not as easy at it seemed those first couple of weeks. Still, I'm hopeful.
Btw....lunch with Ashton Kutcher was my lame attempt at an April Fools joke. I was so tired today that my kids got through the day without me getting them this year. Darn. Guess I have too stick around till next year!
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Lenn thank you so much. I will contact the company about some of the supplements I am taking. I have been taking Ashwaghanda, Astragalus and Vitamin C for the low platelets from the very beginning. I am into my second cycle of Ibrance/Femara and my tumor markers are considerably lower, so I am thinking that these are okay, but never hurts to confirm.
I was advised to take Maitake Extract and Shark Liver Oil to help boost red and white blood counts. I am going to run these by the company. I have no issues taking Neupogen for the white counts as I have taken this on and off for years and have had no issues and have not read of any life threatening issues with Neupogen. But I have refused to take Procrit and will have to deal with the low red counts differently. There have been disturbing reports about deaths from Procrit and they make you sign off before you take it. No way will I ever take that.
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Very disappointed. I called Pfizer Customer Serivce and was directed to a pharmacist to discuss the various supplements I am taking . They said that they had no information on any of the supplements with regard to Ibrance and that I should refer questions to my onc. Not sure now where to direct questions. Would be very interested in hearing what information others have received as far as what supplements not to take.
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shoot I have no ideas. My MO says he has no idea either. Yippee all. Myra
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I don't either Myra. Very discouraging but I will keep on with those supplements that I have been taking all along since my tumor markers have decreased after one cycle taking the supplements.
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Thank you for your efforts in finding info on this. It reminds us that we are in the very early stages of this drug and so much is still unknown. It is so encouraging to hear that your tumor markers are improving, Pearl, I will have another check in a couple of weeks and hope to report good news!
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Pearl - That is too bad the company wouldn't help you. I would have expected more from them as you know someone in that company has the answers. I am going to Dana Farber tomorrow. I will ask them who they talked to.
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I just posted a list of the medications I was told to avoid. Hope this is helpful
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thank you. Myra.
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Wouldn't you know, just after reporting that I had no problems on the Ibrance, I got extremely exhausted, headache, chills and bad stomach sickness that night and was exhausted the next day.
I had just switched from Prilosec to Zantac the night before, but I'm thinking it probably wasn't the Zantac but maybe I just picked up a bug since I was inside in big crowds with kids on the weekend. Hopefully it was not the Ibrance, but I'll ask the nurse (she said my counts were low but she wasn't concerned). I was extremely thirsty also - must have been dehydrated although it seems like I'm drinking enough. I feel better this morning, so hopefully it will be a good day.
Good luck to everyone with the blood counts.
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Hi everyone! I just got word Wednesday that I have some progression on Faslodex so my onc is switching me to Letrazole and Ibrance, so I'm now here with you all and hoping for great things from Ibrance. Thank you so much for all the information already on this thread, very helpful
I don't have the Ibrance yet, but I've just started dealing with my Rx insurance about it. I signed up for the Pfizer co-pay card but had a question I was hoping maybe one of you might know the answer to. The card is good through the end of the year, does anyone know what happens after that? Do these things commonly go on for years and you just need to re apply in 2016? Or are we likely to be on our own with several thousand a month copays for this drug? The thought of that is pretty stressful!
Thanks!
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Rosestoeses, none of us can seem to get many answers about anything. Don't know about the payment schedule at all. Right now I am paying $10.00/month.
3 holly feel better soon. I am off to get more blood work! Myra.
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Thanks Myra, doctor said if it happens again to call and to switch off the Zantac, but it was probably just a bug since the headache and chills are gone. Good luck today.
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NUMBERS ARE UP, starting back up tonite. Finally some good news! Myra.
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Right on Myra!
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Hi Romansma - just noticed you were on everolimus - were you in a study? - I was in a study at Stanford with it combined with faslodex - so don't know it I was getting the drug for sure but I dropped out of the study as it was 10 hours of drive time each month/day (couldn't afford hotel rooms in Palo Alto) and I was very sick - could you tell me about your experience with Affinitor. Also, my experience with the Stanford study was they were VERY attentive while persuading me to do the study but when side effects set in they didn't seem to care much. My cholesterol shot up in 45 days from 160 with excellent ratio of good cholesterol to bad to 270 with a complete flip in good to bad ratio. I have heard that the docs that sign you up for a study are paid up to 100K by the drug company for doing so. Don't know if this is true, but if so, it is kind of unethical I think. Any way did you stop because of side effects, or because it failed?
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Myra, thanks for the response and hooray for your numbers!
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Great news, Myra, so glad for you!
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Thanks al
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Hi apackoftwo. I was on Afinitor for about 10 months. It seemed to stabilize me for about 7 months. I went off Afinitor after an extensive progression that included my tumor markers doubling and scans showing many new areas and most off he existing to be much more active. The SEs were tough in the beginning. Bad mouth sores, reflux, skin rashes, high blood pressure. That's what I remember. It's been a while and my memory is that of a 98 yr old woman these days, so sorry if I missed something. All in all, I would probably do It again
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Myra so glad for your good news. Keep it coming. Romansma praying for the same good news from you.
Lenn thank you for posting the list if medications to avoid. I don't recognize the names of any of the supplements I am taking . I'm feeling pretty good and good energy a week into my second cycle. The only annoying thing is constipation .
Apackoftwo I was on Afinitor for a year. In the beginning it was very difficult with lots of GI issues. But after about three months it got much better. I had no mouth sores and no issues with blood sugar or cholesterol . I think taking Glucophage helped.
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OK someone's gotta do it, LOL! 3 prunes every night makes morning sunny and bright....hope that helps.
Have a Happy Passover or Easter whichever you celebrate. May we be here for many, many more to come.
Myra.
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Borage Oil somehow interacts with CYP3A inducers ( like St. John's Wort) and that is why they told me to stop taking it. I think using the CYP3A inducers/inhibitors as interaction guidelines would be a good way to research suppliments . This information is readily available when you look up suppliments on Web MD or similar sites. Sloan Kettering also has a great section for natural medications.
WBC keeps going down. It didn't rebound this month but still recovering from that respitory issue I had all of last cycle. Not low enough to lower dosage yet. The trial nurse said to really try and stay away from sick people.
Glad your counts are back up Myra!!
Starting cycle 3 ! Here we go.
Happy Sping/Easter/Passover ......
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Interesting you mention the prunes Myra. Anyone else having an increase in constipatiin on this combo? I assume mine is the Oxy, but I was on Norco before that so it shouldn't have changed as drastically as it did. My MO just prescribed Linzess and I took my first dose today. Anyone else take this with any success?
Half way through cycle and the fatigue and weakness is pronounced. So much I want to accomplish each day and so much is not happening. I sleep a lot!
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OK counts are up...run don't walk to mani/pedi. Nothing better for happiness. Myra.
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That's funny, Myra. I did the same thing last week right before I started my second cycle. I knew they'd be the highest possible at that moment and I chose to spend it getting my fingers and toes done. Makes me feel less like an cancer patient. Had the eyebrows waxed too!
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that,s Monday and hair on Tuesday. Squeeze it all in while we can. Oh the simple pleasures we take for granted! Myra.
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Yes! Just had my hair color touched up too! Now, I just hope I have enough energy to get out and do something before the grey comes back and the nail polish wears off!
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Oh I'm jealous of you gals with nails and hair. :-) My hair has just barely started growing back from Taxotere, but my stupid finger nails are still in the process of falling off, they look awful.
I got some bad news yesterday...8 new brain mets. I'm sure I'll be booted out of the clinical trial (brain mets have to be under control in order to qualify for the trial). My insurance has approved palbo, so maybe I'll be able to keep taking it, though my liver is hurting more and more over the past few weeks, so I suspect I've got progression there as well. My onc will be running markers later this week and I expect they'll be higher.
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so sorry nancy, my prayers are with you. Myr
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Shoot, Nancy, I hate hearing that! Really hope you find something that pushes everything back without too many side effects.
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My white blood cells came up enough that I am now starting my second cycle of Ibrance?Femara. Oh how I want it to work as it brought the tumor markers down to 8 from 54. Yep we have got to figure out a way for it to be my ticket to health for the next 2-3 years. I feel well just am going to have to monitor the blood. thanks everyone for your input. Carolyn from Music City
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Praying for some relief for you, Nancy. Maybe the Palbo without a trial might be better and less stressful.
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Thank you all for the insight and inspiration. 2 days down with little SE. 19 more days to go. Praying for all of us.0
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Happy it's going well, NTLani. The first couple of weeks seems to be very uneventful. Hoping it doesn't hit your counts too bad.
Need to get hopping this morning!
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Nancy,
Sorry about your progression. Hope your new treatment will reduce the new mets and relieve the pain you're in.
Terri
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Hi all. Everyone has been so quiet here. Hope everyone is feeling good and enjoying a pain free week. Myra.
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I am half way through my second cycle. I asked to have my blood done yesterday to see where we were with the counts since I am leaving for a cruise on Friday and don't want to be on the ship with low red and white counts.. The good news was that my WBC was good. I did do one shot of Neupogen last week. So if I can get through the entire cycle with one or two Neupogen I will be happy. No side effects at all. Am getting my blood drawn again tomorrow to see if I need another Nuepogen.
The bad news was my hemoglobin was 9.9. I had a long discussion with my onc and with the holistic pharmacist that he works with. I refused the Procrit that was recommended, but my onc and the pharmacist recommended Maitake drops, Squaline (shark cartilidge) and CoreOxygen to bring up red counts. My onc doesn't think that these supplements will affect the effectiveness of the Ibrance and neither did the pharmacist at CVS Caremark. Also taking a liquid iron supplement that is said to be very gentle on the GI and not cause constipation. It is mixed with various berries and pear, but no grapefruit. Hoping these do the trick since I absolutely refuse to do the Procrit. I will let you know.
Also my platelets which had been low are normal now, so it looks as if the Vitamin C, Astragalus and Ashwaghanda are working. Thank goodness.
Nancy, prayers for you. So sorry to hear your news. Hoping they let you stay on the trial.
Hoping that everyone is feeling well today and gets some positive news.
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Hi Pearlady, have a wonderful cruise. Where r u going? My DH and I cruise extensively.
I know you mentioned this before, but I can't seem to find it. What is the dosage for vit c and other supplements for platelets?
Thanks, Myra.
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Myra we are flying to San Juan and staying there 2 days. Then cruising to the southern Carribean, including my favorite, Grenada. Can't wait especially after the terrible winter we had.
For the Vitamin C, 1000 mg twice daily. I'll have to look when I get home, but I take a brand that was recommended as being easy on the GI. The vitamin c is taken with the Astragalus twice a day. The Ashwaghanda is twice a day before a meal.
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thx so much. I usually take ester-c since regular c upsets my stomach. Myra.
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Hi ladies of the Ibrance thread!
I have been a visitor since my stage IV (from the start) diagnosis last fall. I am going to be getting my Ibrance script in the mail this week and will definitely let you know my experience with it. I was wondering if anyone here is taking the drug in combination with Arimidex as that's what I had been started on in October and my Onc wants to add the Ibrance as opposed to switching to Femara since I have been getting good results with it. I was also wondering if anyone is on Celexa? I am currently taking it and there is a slight chance of drug interaction, so I may be switched. Are any of you taking an antidepressant with this med? If so, which ones? I'm really hoping to get the most out of this drug with minimal side effects, but aren't we all!
So glad I can read and share my experiences with a group that no one ever thought they'd be, nor ever wanted to be, a part of.
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Yes that is suppossed to be good. I take a brand named Carlson that was recommended and it is also very gentle.
Myra I see that you've taken Faslodex for a very short time. Did it not work or did you stop because you started Ibrance? Just wondering as I've not yet had Faslodex. I've spoken to my onc about it and he wants to save it for the future. I did, see, however, that they are doing clinical trials with Faslodex and Ibrance.
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Faslodex was a major fail.
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Yes, Faslodex failed for me too. However, I'd be open to seeing how it worked with Ibrance.
Have a great cruise, Pearlady! I just cruised to Mexico with girlfriends last month and my husband and son and I are going to Alaska in June. We are on Spring Break right now in Las Vegas. Going to see Shark tanks and then out to Hoover Dam today. As soon as I can drag myself out of bed! So fatigued! Heading to Zion tomorrow and Grand Canyon Thursday. Hoping my energy level cooperates!
Welcome to the thread, jjski. Hope this goes well for you
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Romansma have a great vacation. Hope you are doing some relaxing spa time in Las Vegas. Hope your energy level cooperates.
I took the Alaska cruise with friends several years ago and loved it. My favorite thing was a helicopter trip to the glaciers and actually getting out and walking. Bring something warm. I went in early August and had to buy a coat on the ship..
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Jjski my insurance company would not prescribe Ibrance without Femara. I was on Femara for five years with NED between 2003 and 2008, but my onc said that I should take Femara again and that maybe in combination with the Ibrance it would work again. Hoping that's the case. So far my markers have dropped, half way through my second cycle. Good luck to you also and hope you have great results.
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Romansma-- Zion is one of my favorite places. Enjoy!!! Pearl - have a great time on your cruise! It is still raw and cold here in Massachusetts and snow showers tomorrow!! These warm vacations sound SO SO nice!
My trial nurse called today to talk about my latest blood work. She said that I should expect my counts to hover around where they are after two cycles... Like you Pearl, I am going to try and raise my RBC and hemoglobin. Not much I can do for WBC which is now at 2.5 ( down from 11).
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Lenn, I would take 2.5 any day!
Hope: Love Zion and Bryce which I hope you are also getting too. That is the one place on earth that I actually got up to see the sunrise. Spectacular!
Pearlady: My DH did the Mendenhall Glacier in Alaska too...He loved it! Our cruise was in July and it was so warm that when we went thru the glaciers, they were serving margaritas instead of hot toddies, it was very comical. You never know with Alaska temps.
Myra
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I'm so inspired by all of you traveling women!
This afternoon I had my appointment with my oncologist to change treatments following progression from Faslodex. So sorry to say goodbye to that drug, as it kept me stable for nearly 4 years. I do feel lucky that Ibrance is out there now, however, and I'll be starting in a week or so, depending on when/if my insurance says yes, and when it gets here. In the meantime, I'll start the Femara while I wait. Last scan showed a couple small mets to the liver, and my CEA has been making a slow but steady climb for the last six months. I hope Ibrance can knock those number back down. You all have been the trailblazers, and you are making it much easier for people like me who come after to believe this is doable. Thank you for starting this thread, Romansma.
Crossing my fingers that I have no insurance snafus.
In talking about the side effects, my MO said that the low counts were the only ones they have seen (the have been involved in the trials), and just waiting a week for the counts to come back up has been working. So it doesn't sound like they have lost many patients because of the counts. He wants blood work from me monthly, a couple of days before I start each new cycle. I was glad that I only need to have bloodwork once a month.
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sandilee welcome to the group. I hope you have success. So far my only SEs have been low counts. My MO requires blood twice per month. I think he does too many TMs. Sometimes you need to give things time to work. He does tend to be quite conservative. Myra.
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Thanks, Myra! It's interesting how different docs do different things. I guess that's a good thing, actually, as it shows they're thinking and not just following a script.
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Has anyone on this site not been able to get approval for this drug, even after appeal? I am a little concerned about not being "first line" for me, which will give the company reason to deny.
It would be kind of silly, though, because the other choices, like Affinitor and chemo, are not much cheaper!
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Sandilee welcome. My only side effect has been the low red counts. I am using natural supplements to boost the red. Getting my blood checked on Thursday so we'll see if it works. My wbc has been good but I have been doing one to two Neupogin with each cycle, with this being my second cycle. A little constipation also which I'm sure taking iron is not helping . My energy is good.
Romansma enjoy Zion and the Grand Canyon. Went on a meditation trip to Sedona and Grand Canyon several years ago . The sunrise at the Grand Canyon was really spectacular .
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hope. _ enjoy your travel and families. Love your go get em attitude as a I read about your adventures from my couch - recliner. Have a blast. Mske these memories count.
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We have all gotten approval, and for most of us here it is second and third line approval. If you look back a few pages, I posted some articles regarding that topic.
Pearlady, I posted my remedy for the constipation problem afew posts back. Works like a charm and natural too!
Also, finally got an avatar up of myself and DH. thought it would be nice if you knew who you were writing to. Myra.
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Good morning all you brave ladies! Wow, am I tired! Got myself in tears of frustration yesterday with all the walking. It got to be too much. I recovered and it was a nice day after I got through my feeling sorry for the self that I am now. My son told me last night that he loves being on on vacation with me and dad. That's all I need to keep going!
Me and my husband and what is left of Lake Mead. Off to Zion today!
Stay strong, everyone. Life is too amazing to spend it in bed every day! (Sure hope this Ibrance is working!)
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AWESOME. Myra
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Thanks Patty. I spend many hours in front of my TV on the couch. Now I can spend hours relaxing on the beach after the terrible winter we had. Today its 42 and damp. Not really spring yet.
Hope everyone is feeling well today with good energy.
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Love your photo, Romansma. You guys are both adorable.
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Romansma love your picture . What a beautiful couple. Glad you are enjoying your well deserved vacation.
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outstanding photo, romansma! 📷
You were tired but YOU GOT OUT OF BED AND DID IT!!!
Makes me smile to see you two.
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What a beautiful photo Romansma. Certainly understand feelings of frustration and tiredness, but you are doing so much. I hope I can do half as much on vacation this year. And you look great!
Update on Ibrance - although initially approved by insurance being paired with Arimidex, Insurance is now questioning the pairing. So my Onc wants me to switch to Femara to make sure I don't get denied down the road. So I will start the Femara on Monday and get that in my system for a week and then get the Ibrance. I I am new to this world but itseems there are a lot of glitches to get smoothed out when a new drug comes on the market. My Onc says there is no difference between arimidex and femara as far as effacacy. Wonder if anyone has had experience here with switching drugs.
Take care ladies and I pray we all reap the benefits of this new treatment.
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I am 61 grandmother diagnosed with ilc with bone mets in jan 2015. I am on the 3rd round of Ibrance and femara now. 2nd round...Bone pain (especially ribs) so I started using a heating pad. It felt better. But then I had itching in the night. When I woke up to check it out It was a rash that spread quickly as the day went on. Also got a sore on my tongue that kept getting worse. My nose had sores that got so bad that started little nose bleeds. I felt the pain in all my bones where the cancer is. Also "pings" sharp pains everywhere at different parts of my body that lasted like a few seconds....once in a while. My toes go like out of joint once in a blue moon. I had a headache that lasted over a week every morning. Ibuprophen took care of it. Some hair loss. Fatigue is my worst complaint. My feet are so dry and cracking. Muscle twitches here and there. Very constipated. And now have Gerd. Prescibed med for gerd. 3rd round of Ibrance and femara...i used coconut oil for my nose. It is all better. My fingers felt funny so I put coconut oil and white cotton gloves at night. They are better. I used a zilactin on my tongue for a couple weeks...all better. Bone pain is gone. Aquaphor (eucerin) worked for my feet. Prunes and prune juice work for constipation. My blood counts were a little better last week. The powder that was prescibed helped the rash go away. It left my skin a darker color and like leather with dry scales but no more itching. So far...all se are manageable for me. I hope this helps others on Ibrance/femara. I pray for all of us everyday.
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Riverbelle I also have constipation especially now that I am also taking a mild liquid iron. I use Constipation Stop, an herbal remedy which my holistic pharmacist recommended . You can get in Amazon. It really helps and is very gentle. Glad to hear you're feeling better. I'mI'm almost finished my second cycle and my TMs are lower. Hope Hope this tretrend continues all of us.
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Hi Riverbelle. Have had none of those SEs except those little sores in my nose that led to small nosebleeds. Will try the coconut oil. Low blood counts. So far TMs down slightly after one partial cycle.
Have a back ache, more like a muscle cramp, today. Spent 2 hours yesterday slumped over a desk counting a huge mound of change. We save all our petty change and we have $180.00 to turn it and my back knows it! LOL
Pearlady isn't your cruise vaca coming up soon? Are you counts ok to go? I hope so, and have a wonderful time.
Hope, how was the rest of your vaca? You guys look awesome.
Jjski62, good luck starting. Your MO is smart not to screw around with the Big Pharma. We unfortunately are at their mercy.
Have a great day all! Myra.
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hope. - I love the pic. You got a handsome guy there and you are looking beautiful. Did I say awesome pic ! Thanks for sharing. I always think of you as your wedding renewal pic of you and your dh. Glad you are out there doing it ! Proud of you for keeping on keeping on. That's what we really have right? Either lay down and give up ( not there yet ) or medicate our pain , eat for energy and keep moving so we don't get stuck in that position. Staying stiff all day never helps me for sure. I hope you enjoy whatever time you have left in vacation. You have earned it.
Everybody else : have a great day. Glad to see so few side affects for this new drug snd love to see the excitement it holds in maybe just maybe being the new go to drug for bc mets. I think you all are just wonderful for being on the front line so to speak as research history is being changed so dramatically. Praying one day this will be a chronic disease and then an unremembered disease. A bco sis used to say something like " remember breast cancer?.... Yeah me neither!"
Jjski. - hoping femara treats you as well as if has me. Sorry you are having to change. But if dr thinks it's going to prevent you from having ibrance in the future it's probably a good idea. It's just a little sad that you will have to mark another a1 ( esp such a easy one ) off your list to try before iv chemo. Here's hoping you won't need to worry about that because this tx is doing it's job !!!!! Hooray.
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jjski62,
Good luck with the new drug, I will pray for good results for you and for all.
I will be starting a new round of Ibrance but need to get another blood test tomorrow to make sure the counts are OK. The nurse says that although the blood counts are low. my %POLY-A was 66.3% which means I still have ability to fight infections despite the low counts. After one round of the letrozole with ibrance, the tumor markers were as follows:
CA27-29 increased from 1138(H) to 1208(H)
CEA decreased from 20.4(H) to 17.6(H)
Romansma, great picture, thanks for sharing. You and your husband look terrific, and you are inspiring me to get outside now that we finally are getting a couple of nice days in MA - got out for a walk yesterday, went to my son's baseball game (finally the teams are playing outside) and I actually saw some crocuses and grape hyacinths emerging from the wet ground in my yard (the dirty snow piles are finally nearly gone except for the mountains that were dumped near the beach). So things are looking up!
Thanks everyone for all the great information!
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Riverbelle, pearlady, Myra, thanks for the tips and info on side-effects. And Romansma, love the photo, looks so sunshiny and happy! I hope everyone out vacationing is having a great time!
I'm still waiting for the specialty pharmacy to get everything together and send me my pills. I'm not supposed to start taking the Ibrance until I get home from my own vacation at the end of the month (onc dosen't want me out of range when starting new meds and thinks the letrozole for now is ok and add the Ibrance then), but I'm starting to get anxious about having them here by the time I get back. Why can't anything with bc ever be simple?
PattyPeppermint, I hope you're right about bc someday being a non-issue. I hope Ibrance does a lot to make that happen, or at least as the start of a new kind of drug I hope this is the beginning of something great.
And 3Holly, I hear you about the weather here. The sunshine today feels so nice especially in comparison to that never-ending winter!
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Myra we are on the cruise now. In St. Croix today. Beautiful beach day. Feels so good after the terrible winter we had. My counts were a bit low but not terrible . My hemoglobin actually went up after taking the liquid iron for three days. Only four days left in this cycle.
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Thanks everyone for sharing about the nose sores. I have had he same thing since the first cycle and thought it might be related to the Palbociclib, now I would say "yes", since many of you have had the same thing.. I have been using a saline nasal spray to keep any infection from my nasal passages and will try the coconut oil.
I drink a couple of organic Kevita probiotic drinks everyday and that helps with any of the gastro issues. I have been very conscious of diet on this third cycle, getting enough protein and iron, drinking enough fluids and I have found the fatique to be better. It could be I am just getting used to the drug.
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I made it back! Exhausted, but really happy to have the memories! Finishing my 2nd cycle of Inrance tomorrow night. Having my blood drawn tomorrow. Checking tumor markers too. Really hoping they are down. I feel a little better than last cycle at this time. I'm tired, but not so bad that I can't do a few things. Also, something interesting happening over the last couple days. I've been able to cut back a little on pain meds. I don't want to get too excited, because the day before this started, I had a total melt down from needing pain meds. Still, I'm a little optimistic that something might be heading in the right direction!
How is everyone?
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So glad you had a great trip! Great memories for you and your family.
I see that you have your blood work done the day after you finish your cycle. By "cycle" do you include the week off as well, or just the three weeks you're on the drug? I guess my question is, do you take your blood work after your blood has had a chance to bounce back on the week off?
Also, do you have the pills for the next cycle in hand when you go for your blood work? I'm just a little confused as to how this works with the monthly draws and keeping up with they cycle schedule.
I'm still waiting to hear if my insurance has approved Ibrance. I've started the letrozole.
Myra- I have looked back and I don't see anything confirming that people with Anthem Blue Cross have been approved for second or third line therapy. Obviously, there are women here getting it, but I don't know their insurance situations and if they are similar to mine. My onc said that Blue Cross has denied some patients but some were appealing. If you have had an easy time getting it, consider yourself lucky.
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Sandilee I have united healthcare. They wanted $9000.00:mo. Hahshs. Applied to Pfizer and got the pills for $5/mo. Have u tried this route? We have gotten it as second and third line for most of us. I have my blood work halfway and then before starting the next cycle. Tomorrow is halfway.
Hope so glad u had a nice vaca. Good luck tomorrow with your blood work. Myra
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Just letting you know I take Celexa 40 every day and there has been no interaction with arimidex or I am now on Femara and Ibrance....I know of no reason to stop Celexa ever...IT has been wonderful for me for over 15 years now. Carolyn from Music City.
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Thanks, Myra. I haven't tried the Pfizer route yet because I haven't heard whether the insurance has given approval yet. I wonder if it's possible to go through the Pfizer program before getting insurance approval, or do you wait until they give you their answer/copay, and then approach the Pfizer? It sounds like they work together somehow. I'll give it a few more days and if I don't hear anything, call the doc to see what's up and let them know about the Pfizer program, if they don't already. Thanks for your reply.
And 9K a month! Isn't the drug cost 10K a month total cost?It sounds like they're paying the copay, and they want you to do the rest,lol. Glad you got the card from Pfizer!
My onc said my copay might be $500 a month. If that's the case, I'll apply for the copay card program, and hope I can get it for $10 until the end of the year.
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I think you need insurance denial to go the Pfizer route. Your Onc should have all the info and work with insurance and Pfizer to get it to you as fast as possible.
On blood work, it can be different from Onc to Onc. I was doing my both at the end of the 21 day cycle and again the following week before starting again. I think that was because my counts got so low. As we get comfortable with how Ibrance is affecting the counts, we won't need as many blood draws. I'm due for my Xgeva too and always get a CBC for that.
My specialty pharmacy called today to refill my Ibrance and Femara. I will get it in the mail by the end of the week and be ready to start again next week.
Hope all this helps, and really hope you get approval soon
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Romansma - what specialty pharmacy do you use? I have been using Diplomat and they seem to mess up every month on my Xeloda - this month they failed to get me my meds on time - my onc is changing me but I don't remember to who. My local Safeway has a specialty arm which would be much easier but Medicare won't pay for a retail pharmacy.
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my specialty pharmacy is Optimum RX. so far they have been on top of things. Myra.
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I believe I'm using Caremark in Beverly Hills. They usually call me right on time each month to renew everything. I used them for Afinitor and even the Xeloda in th past.
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Hey gals, even though I'm no longer taking Ibrance, I wanted to chime in on the copay and Pfizer's assistance. In my case, insurance approved, but my copay was going to be $250/mo. The pharmacist enrolled me in the copay assistance program and I only had to pay $10. It is worth asking about if you have a high copay.
Good luck to you all!! I'll miss not being on the thread, I'm going back on taxotere next week.
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nancyh,
I was wondering how you were doing, sorry you will have to switch drugs again. You have been amazing to keep up your running and thank you for all your great advice, you are an inspiration. Good luck, and I will keep you in my prayers.
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Good luck on the Taxotere, Nancy. Hope it goes easy on you. I think I missed why you needed to change. Did you progress, or was it SEs? How long were you on Ibrance
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Carolyn, thank you for the info on Celexa. I have been taking it since my diagnosis and will continue it with the Ibrance/Femara. I was also taking Lyrica but weaned off of it as I don't feel it was really doing anything for me and we could not find info as to what interaction, if any, it may have had with Ibrance, as no one in the study was on it, at least that's what I've been told. One less pill for the pill box is always a good thing.
My insurance is Independence Blue Cross, Personal Choice. I will also be getting the discounted copay of $10 month. My specialty pharmacy is Onco360.
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After a week and a half of who knows what, I got the news today that my Ibrance is all set and will be on the way, such a relief! The final hold-up was that it had been flagged for "high copay," but since I'd already called my insurance, I knew the copay was around $2400 (I have great medical insurance, but not so pharmacy insurance). And I already had my Pfizer copay card printed out, so that was taken care of and under control. Thank you, everyone, for all the tips and input about the cost and the card option.
One thing my onc mentioned that I though was interesting was that even though I had tamoxifen after my other stage III treatments, the "first line" or "second line" starts again with the stage IV dx, so for me this is considered "second line" after the faslodex which I had first with the stage IV dx.
But, either way, it's been approved, thank goodness!
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Great news, RosesToeses! Who is your insurance company? Thank goodness for the copay card!
I'm still waiting to hear, but every new "second liner" who gets approved is good for the rest of us!
When I am approved and I get the co pay information (I assume it will be very high), I'll ask the pharmacy about the Pfizer card. Or should I just go online and try to get it on my own?
For those of you using the Co-Pay card, did you get it through your pharmacy, your doctor's office, or on your own by going online?
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Sandilee, I was going to add my insurance co in the post but I can't remember who it is! Rx Solutions, or something like that--it's on file at the pharmacy we use and dh has the card right now. All the drugs given in the hospital (chemo, faslodex, Xgeva) go through our BCBS medical insurance, but this is a prescription so it's under the drug insurance which is a different carrier for us.
For me, I applied for the card online before the pharmacy talked to me and that made it easy when I called and they discussed the "high copay" flag to read off my number on the card and move on--it eliminated a few steps that way. The "card" is simple to do online and you print it off instantly, so I don't think there's much downside to having it set beforehand.
Also, I phoned my drug insurance company when I first got the prescription from my onc and they told me my coverage and price/copay for the drug--might be something to try so at least you have some idea what's likely to happen.
Good luck with it!
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Congratulations Rosestoeses. Your MO is correct you are second line tx. Good luck with the Ibrance. Hopefully sandilee yours will be in very soon!
Pearlady, the vit c and ashwanga worked tremendously on my platelets so far! My platelets actually went up over 250 this week. Now we need to work on the ANC which is 1.2 right now and my MO is threatening to stop it if the counts are under 1.0 on Monday's counts until they come back up. Any magic bullets for them? I asked about neupogen and he said not with thismed. there is so much different info going around. Well, if I get to day 18 that's almost there.
Good evening to all....Myra.
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My MO said no to Neupegen with the Ibrance too. Wonder why? I will,get blood counts tomorrow. I feel a little better this cycle, but who knows! I've been at 1.2 ANC pretty much the whole time. Hope it didn't go much lower, but so far, no infections, viruses, etc.
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Interesting about Neupogen since my onc originally said he would consider something like Neulasta if my counts go too low, but so far the nurse wasn't concerned because the %POLY A was 66.3 so she said I could still fight infections despite the low blood counts. Maybe they are just learning something about Neupogen (and maybe Neutlasta?) with Ibrance, too bad if it is incompatible, but I will ask him at my next visit. I am thankful for this site - first 2 weeks I took Prilosec with the Ibrance and would not have known about it being incompatible had I not checked this site, so thank you, Romansma for starting this thread - it is so helpful! Glad to hear Pearlady's advice helped Myra with the Platelets, that is a big improvement! RosesToses, glad to hear you got approved, and good luck with Ibrance!
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3Holly, I have never heard of the %POLYA blood test. Do you know what it is. Tried looking it up on Dr Google to no avail. Thx Myra.
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Yes, Holly, interested in that too. Maybe that's how infection hasn't been as much of a problem with Ibrance, even though the counts get so low.
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OK! The nurse just called to say I was finally approved for Ibrance! Now waiting for the pharmacy to call me and let me know the co-pay and let them know where to mail the meds. I have my Pfizer $10 Co-Pay card online and and hopefully I'll be able to use it until the end of the year. It looks like I'll get to join this little party, at least for the next three months until we see if it's working. :-)
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hooray Sandilee!
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Myra, The % Poly-A is just one of the lab results they ran when they took my blood at my last visit, not sure if they always do it since I don't see the %POLY in the prior blood test I took at another hospital closer to home a week earlier. My %POLY-A was 66.3%, and the nurse said you take the 66% (or your % Poly-A number) times the WBC count (mine was 1.65), and you're OK if the result is greater than 1.
So mine was .663 times 1.65 = 1.09 which she said means I can still fight infection since 1.09 is greater than 1.
Good luck, Sandilee, hope it works great for you!
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Hello, I have been doing a lot of stocking on this subject, I am about a week away from finishing my first round of ibrance and femara, I have had no side effects to speak of except for maybe a little sore throat , which I am not sure if that is from the meds or just a sore throat. Anyways I just wanted to say Hello to every one, and that I love hearing all of the good things from all of you. I am so hoping this is the drug we all have been waiting for.
I also asked the pharmacist from cvs Pharm. about the prilosec. She was unable to find anything about it and the ibrance, also she called Pfizer and they did not see a problem with it either. I did cut down , and am only taking it once a day and about 12 hours from the ibrance but They both didn't feel it was necessary.
I wish you all good luck and hope the best for all of us. I hope to keep hearing of all of your triumps!
Redroan
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Hi Redroan,
Glad to hear things are going well for you on the Ibrance. I really wasn't sure whether to go off Prilosec since it worked well, but I decided to try Zantac since another Dana Farber patient said protein pump inhibitors were prohibited in the Dana Farber trial she was on with Ibrance, and Prilosec does release for 24 hours (although not nearly as much after 12 hours, so my doc had the same advice you got, just keeping a 12 hour gap). If the Zantac doesn't work out, I may do the same with the Prilosec, but so far Zantac has been Ok.
I have not had a sore throat (I hope that yours will disappear soon and is not a side effect), but I have noticed I am extremely thirsty all night and need to keep a big thing of selzer beside me to keep from feeling dehydrated - maybe hydrating more might help your throat, you could give it a try. Good Luck!
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All,
A little info that I was able to find.......When the absolute neutrophil count (ANC) is less than1.0 or less than 1000, risk of infection is increased. Hope this helpful, although a little confusing because of the varying terminology for the same thing......Praying for all of us to be in the normal range.....
POLY, POLYS, and PMN stand for polymorphonucleocytes or polymorphonuclear neutrophils. On some lab reports, they refer to your segmented neutrophils and other times to your total neutrophils (both segmented neutrophils and bands).
Absolute neutrophil count (ANC): Neutrophils are the main white blood cell for fighting or preventing bacterial or fungal infections. In the CBC report, neutrophils may be referred to as polymorphonuclear cells (polys or PMNs) or neutrophils. The absolute neutrophil count (ANC) is a measure of the total number of neutrophils present in the blood.
A normal range for ANC is 1.5 to 8.0, which translates to 1500 to 8000/mm3.Sample Calculation
WBC count: 6,000 cells/mm3 of blood
Segs: 30% of the WBCs
Bands: 3% of the WBCs
Neutrophils (segs + bands): 33% of the WBCs
ANC: 33% X 6,000 = 2,000/mm3
ANC of 2,000/mm3, by convention = 2.0
Normal range: 1.5 to 8.0 (1,500 to 8,000/mm3)
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Thanks GDG, I was told the same about the ANC and 1.0. Last month mine was at .6 and my MO took me off. Some here have gotten low and kept on. Wish they all used the same terminology. Myra.
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sandilee. yea. Hoping lbrance does a great job.
Keep strong you pioneer women. So excited where this drug is taking mets
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Thanks for your cheers Patty. Maybe this could work for you at some point! Congrats Sandilee and Roses. I look forward to hearing how you do. Really hoping to hear some success stories here.
I had an appointment yesterday. Nothin new. WBC at 1.2, ANC at .6, and platelets 10.1. Low, but doable. My tumor markers went down slightly. They are down 8 points over the last 2 months. That's not much, but considering they had doubled in the previous 6 months, I'll take this downward trend as good news. Hoping to keep seeing it go down over the next few months. Even more, hoping Ibrance is a long term habit!
I had been feeling not too bad this past week, all things considered. However, I over did it yesterday. I had bought my husband Steely Dan tickets at the Santa Barbara Bowl for his birthday. We got there a little late because he had a 5k Corporte Games race after work last night. Anyway, I walked a couple of blocks to see him run his race, then a couple blocks back. When we got to the Bowl, the lots were full. We ended up parking about a mile and a half from the bowl. Then, we had to hike way up to the top because we had the cheap tickets. Then......all they way back afterwards at 10pm. Wow, I'm hurting today! I'm still in bed. Wonderful band. Incredible talent. Love the Jazz. Not sure I will buy tickets to the Santa Barbara Bowl anytime soon unless I take Uber or a taxi....better yet, a limo
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Hello ladies,
I'd like to join in the Ibrance discussion as I was recently approved and my pills arrived yesterday! I haven't posted in years, but have always been grateful the boards have been here to find great information, support and inspiration! I am 42 with 3 beautiful children 13,12,&9, they were only 5,4,&1 when my battle began 8 years ago I have been metastatic for 3 years and after taxol for the 2nd time, I tried aromasin, faslodex, arimidex and afinitor. I finally found great success on weekly Carboplatin infusions for the past year. I'm always anxious to begin any new treatment so if you could share your experience with side effects I would appreciate it! I read through many pages and found the majority have low counts. Seems silly after all we've been through- but gosh -really hoping there is no hair loss on this as I haven't had any on Carbo so I wouldn't want to give up that treatment for worse side effects. My kids always worry more when I have that visible sign of treatment
Thank you! May this be a successfultherapy for everyone! Margie
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welcome Margie, I hope the journey into Ibranceland is a good one for you. The MOs here are all trying their best to become comfortable with this new drug. We are all trying our best to get used to the blood counts. Good luck. Myra.
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Myra: Ibranceland!! :-)
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Hi Margie! I totally understand the hair thing. I have kids too and they are very sensitive to me losing my hair so I've been trying to stay away from anything that has that side effect. I don't think anyone here has reported that. The main side effect seems to be fatigue from the low counts. My second cycle was a little better than the first. I guess your body starts adjusting the energy expenditures with the perpetual low counts.
Night all you Ibranceland dwellers!
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Hello everyone, may I join?
I just want thank you all for your insight and to share my experiences on Ibrance as well.
I'm about to wrap up my first round and that giant slamming sound you hear is my counts hitting the floor. Red and white.... hemoglobin below 10 and white count at a dismal 1.6.
Onc says I should rebound next week when I'm off. Thank you pearlady for the info on the ashwaghanda. I will certainly be looking into it. I will also be asking my herbalist and onc if pau d'arco tea is ok. I just brought some back from Costa Rica and it is supposed to really boost the immune system. At the same time I don't want to take anything that would interfere.
Weeks one and two were pretty much side effect free, but I did notice some more intense hot flashes and some slight stomach upset. The fatigue seemed to catch up with me this week but I've tried to push through it with long walks. The upside is that some very sharp pains in my outer thighs have faded. Some general lower back pain remains but it is tolerable. I have some spine mets and onc suspected inflammation there was pressing down on a nerve. Good news is if the sharp pain is easing it's possible those cancer cells are shrinking *fingers crossed*
I am finding a few more hairs coming out than normal during hair washes but again nothing major. Here's wishing us all the best on this new med.
Romansma thank you so much for starting this awesome thread,
Kay
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Welcome Kaydee! Looking forward to your contributions!
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Hi Kay, welcome. Myra.
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Welcome, Kaydee. It's great to hear from another person who seems to be handling the SEs well.
My pills came in the mail today, and I will start them on Monday. I want to time the end of the cycle to my doctor's appointment next month to do the blood work, so I need to wait a couple of days.
I was wondering- are you all starting with 125mg? Has anyone moved down from there to 100mg, and did it help?
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Ibranceland here I come!!
I've been reading and absorbing since day one of this board. I was just diagnosed in January and started Ibrance in February. I was able to get in on the tail end of the clinical trial at the Hillman Cancer Center. Halfway through my third cycle. I've been reluctant to post because I'm still trying to figure out all of the lingo and counts. I am taking the 125 dosage; have also experienced more hair washing out; and energy comes and goes.
As a newly diagnosed Stage IV my biggest question is...are people able to continue working? I just requested a leave from work (usually work 45+ a week). I feel my body needs time to rest and adjust to the medication. Plus I think I mentally need time off to process everything. From what I have been told Ibrance has high hopes. So I'm hoping that after a brief rest I'll feel like going back to work. But if not, does any know if a Stage IV diagnosis enables you to disability? Not giving up just want to be prepared.
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Hi Sandilee, I started on 125 and got switched to 100 after my ANC went to .6 after 17 days. Now on day 15 and my ANC is low again and MO is threatening to stop it again. New blood work on Monday. He said this happens sometimes til your body gets used to it. Meanwhile TMs down slightly, but right side hurts. Was counting change last week for 2 hours and attributing to that. Need to put heat on it and see if it works.
Welcome PPAP. I have not experienced any hair problems nor have I been too tired. I think the hair thing is attributed to the femara. I also get flushed more than flashing. Hot during the night too.
Well, enjoy the crazy up and down, turns and twists of this bc stage VI dx ride in Ibranceland.
Have a great day all!! Myra.
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I know all the MOs trying to figure this out, Myra, but I've been at .6 with my ANC pretty much the whole time. No threat of dosage reduction and definitely no breaks. I don't know why there would be such a difference. I thought maybe it was your platelets last time. Anyway, just hoping you get to staywith us in Ibranceland!
Ppap, welcome, and thanks for posting. Sounds like you are a little ahead of us if you've completed 3 cycles. Good to hear from you! As far as working and disability, I find it too hard to work. Pain, fatigue, and even the cognitive side effects from the AIs make it too hard! If you decide to stop working, you shouldn't have any problem with SSDI. You can apply online. There are some things for your MO to sign. There is a 5 month waiting period that you cannot be working before the payments start. If you have short term disability insurance, that should fill the gap. Also, Medicaid doesn't kick in till after 2 years so you'll want to have your own coverage during that time. Anyway, glad you are taking a break. Too much to process while working so much.
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Hope, I have worried that my MO might be too conservative and careful. Seems like I have not had any tx work for more than two months. Last PET scan I felt was basically stable, but he thought there was slight progression. I read these reports for a living, I am a Tumor Registrar. I got switched again. He seems to be very wary with this drug. Am definetly considering a second opinion at Dana Farber, my brother lives in Boston and I would stay with him. As I have said before, making decisions is difficult lately. Never had this problem before. I have owned and run my own business for 30 years! Myra.
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Romana thank you for the information. My tumor is in my liver and causes me pain. I've also been having some cognitive issues but to continue working I have not been taking any pain meds. I think deciding to finally take my 70+ vacation days is the right thing for me to do at this point. I do have a short term disability policy if I need to use. It's the long term medical coverage that worries me. Since I am 49, single, with no children. My work and extended family have been my life for the last 28 years. I guess now I have to learn to make myself my #1 priority.
On day ten of third cycle. My end of three cycle scans are scheduled for the 30th. I amanxious to see the results of the Ibrance. I'll keep everyone posted.
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Thanks for the warm welcome ladies!
Sandilee, I'm just wrapping up my first 21 days on Ibrance and I am at the 125 mg dosage. Saw onc yesterday and my counts are low (hemoglobin, platelets and white cells) but he says he expects them to come up during the week off and did not mention lowering the dosage.
PAPP, take those days! And come on out of there if you can and you feel work is just too much. Be really good to yourself right now, kind to your body and your mind. If this Ibrance does the job for us, even if we come out on disability, we can always go back to work. As a recovering workaholic I know what a mental shift it is to make yourself your main focus - but YOU are the priority right now. Hoping you have GREAT scans.
Kay
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I think a second opinion is a great idea, Myra. Your MO may be right on and a second opinion will confirm that. Otherwise, you may gain some insight that will help you change course. My MO reminds me that hormone positive treatments are a bit slower to show results. For me, stabilizing my tumor markers is a win, for now. I'd like to see them go down, but I don't expect that to happen in 2 cycles.
Ppap, happy you are taking some time off. After some rest and relaxing you will be able to decide better if its time to stop working. I'm sure there are options for keeping your insurance. Something to look in to.
Enjoy the weekend everyone. I was looking forward to a little gardening today. Not sure I will be able to. Back and hip pain isn't relenting with the Oxy, so far.
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My ANC has been around 1.2 / 1.1 for the last 2 cycles. The trial nurse thinks it will just hover around there for now. My dose is 125 mg and I doubt it will be lowered. I am coming to the end of cycle 3. The fatique has definitely lessened.I have a very physical seasonal job that I am back doing. the days are going well... Just nothing left at the end of the day. I was really worried I wouldn't have the stamina but so far so good.
My blood counts are not really changing on the off week. I did manage to get my red count up and I think I did it with diet. It is actually pretty normal.
I was trying to post a link about the Paloma 3 trial- which was ended this week because the results were so good. I will see if I can get ithe link up sometime today.
Welcome and good luck to everyone just starting the drug. After this cycle, I will go to having blood work every month instead of every 15 days. I have been getting an EKG every month but that will be going to every other month. I will also see my MO every other month instead of the every month I have been doing during the first four cycles.
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Romansma, I sent you a PM
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I read that too. Good results from the Paloma III trial. I will look for where I read it and post.
Edit. Found it!
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My MO told us this is for people who have not had previous AI. I've been on Tamoxifin and Arimidex. Is anyone on this who has had other AI treatment?
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I was on tamoxifen 10 years ago and femara. Myra.
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NorthTexas-Aromasin and Faslodex. While the drug was approved for first line, it is being prescribed for second and third line for many of us. It seems that insurance is covering it, too.
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Hi Ladies,
Thank you for sharing all the useful information in this thread. After my mets dx. I've had:
gemzar/carbo
femara/letrozole
abraxane
faslodex
abraxane
Is there a chance I will get to try Palbo? Sorry, I really did try to read through the whole thread and I don't think this one was addressed. It's just that I have heard so many good things about Palbo. A friend of mine who has been through many treatments said she had to buy 300 shares of Ibrance to get samples in the mail?!
Has anyone here been through as many treatments as I have yet got the opportunity to try Palbo without huge out of pocket expenses (which I can't afford)? Are most of you (or all of you) on the phase 3 clinical trial? I'm thinking no because some of you have written that this is not your first line of treatment.
Thanks for your time and take care!
Brenda
P.S. Arimidex, Femara/letrozole, and Faslodex did not work as single agents.
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Ladies, I am three pills away from finishing the second month of Ibrance/Femara. Blood counts are low but I feel fine...I cannot figure this out. I am due to go to a large family gathering in Norway in 4 weeks. Read: I am worried about international travel and long flights with lowered immunity..Does anyone have any ideas regarding being cooped up in these planes for a long international flight with lowered immunity...Otherwise I am pleased. Do not go to Oncologist until May 6. hope all of us have found our wonder medicine for the next few years. Carolyn from Music City
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Adnerb, I have had more then you as far as treatments go and my insurance ok'd the ibrance. I still had to get the copay card to be able to afford it, Just praying this is the answer for us all.
Redroan
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Hi Northtexas
Since my recurrence three years ago, I have been on a couple AIs; aromasin+affinitor and arimidex, as well as faslodex and chemo.I was just prescribed Ibrance and my insurance is covering it. Hope the same for you!
Margie
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Thanks for posting that link Romansma. I was trying to do it from an iPad and couldn't figure it out. All good news.
Carolyn, your trip sounds great. I really want to visit Norway! The Nurse at DF advised just washing your hands as much as possible and keeping your hands away from your mouth and nose. I am using saline nosespray as well. I always bring a small package of Lysol wipes on planes and wipe what I can. Don't touch anything if you can help it.
The feeling I get from the nurses/Dr.s on the trial is that they are not getting too hung up on the low counts and doing anything special about "germs". Pretty much old school common sense.
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Carolyn, I know how you feel about planes. There are a lot of coughs going around in MA right now, not sure if it's the weather changes or start of the allergy season. Some people say that Airborne helps (at least with colds) if you take it before going on the plane, might be worth a try if it agrees with your meds. Have fun in Norway, I hear it's beautiful !
Thanks Lenn13k and Romansma for the Paloma III info, good to hear that news.
Adnerb, it sounds like Ibrance might be an option for many - they are still figuring it out, and the insurance, but it's promising along with some other similar drugs (including a drug by Eli Lilly - not sure if I spelled it right) that could be approved soon.
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Good afternoon, everyone. I'll be taking my first Palbo pill this evening with dinner. This is second-line treatment for me, but my insurance approved it, for those of you who are wondering about getting it after other AIs and hormonal treatments.
Carolyn and others getting on planes: I have a friend who is a consultant to the healthcare industries and she talks to a lot of specialists in the field. The word from her is that the germs on the plane are transmitted primarily through surfaces, not so much the air. The planes are not sanitized after people get off- seats and armrests, and drop-down trays are all really contaminated, especially if the plane has had a quick turn-around time. What was suggested to her is to wear cotton gloves. I asked why cotton and she didn't know but said that cotton was specified as somehow being better protection.
I'll be flying to Chicago in two weeks- just about the time I expect my counts to drop- so I found a source of cotton gloves online and ordered some. They were cheap- $17 for 12 pairs, and half of that was shipping- so what's to lose. I may look a little strange on the plane, but it's better than wearing a mask. ;-) I haven't received them yet, but I don't really care about the quality. As long as they get me through the trip it will be worth it.
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Do you all take your Letrozole at the same time that you take the Ibrance? I took my Ibrance with my dinner, but prefer waiting until bedtime to take the Letrozole. Does anyone know of a problem with this? I won't see my onc for awhile and I was just wondering. I'm assuming it's ok, as the drug stays with us.
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Sandilee, I'd like some feedback on the timing too. I've been taking both pills together - but I wonder if they're more effective if you take them at separate times.
And thanks for the cotton gloves tip. I'll be on a cross country trip next month and am concerned about my really low white cell count. I also plan on increasing the amount of protein I eat. It's been hard to meet my daily intake goals since I cut out a lot of meat.
Lenn13ka - may I ask what diet changes you made that you think helped boost your counts?
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kaydeesmile and sandilee, I take them both at the same time after dinner. I was never told anything about it just make sureyou take with food. I take vit c, ashwanga(?), 1200 mg calcium with D, astralagusand pain meds. I don't think I have any more time in a day for more pills!! LOL. Pearlady gave me the vit. Supplement suggestions and they worked like a charm for the platelets. WBC did somewhat better this round too. Platelets never got low.
Finally have an appt with an Interventionalist MD on the 30th. Will let you all know what he says.
Enjoy your day all. Exceptionally warm here this week in Florida. Did someone say Global Warming? Myra.
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Kaydeesmiles, I take both pills at lunchtime since I have needed an antacid at night ever since my first radiation 6 or 7 years ago, and you are not supposed to take the antacid near the Ibrance/letrozole to make sure it's absorbed (found this out after 2 weeks of taking it wrong).
Myra, glad to hear it is warm down there in Florida, for those folks on april vacation - kind of chilly here in MA still - a lot of colds going around. My son came home from his CapeCod baseball game sick - might be strep, I think I will take the advice on the gloves when visiting the pediatrician!
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This is a 4th line of treatment for me. No problem with insurance approval.
I'm on my week off between 2nd and 3rd cycle. I was doing ok until Saturday. Lots of bone pain, especially in my lower back, pelvic area, and hips. Very fatigued. Headache. This will be day4 of feeling this way. Not sure why. Wondering if it has anything to do with my body trying to recover blood counts. Kinda stabbing in the wind here. Not feeling well at all. A little worried about starting a new cycle tomorrow night.
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Hope same for me in same areas iof pain. Spoke to RN. think it's femara SEs. Feel better. Still lucky no fatigue. Myra.
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Romansma, I'm really sorry to hear about your latest bone pain. Did you take anything for it? Sometimes my bone mets act up- never know why- and a couple of Advil help. You may already be on other pain meds, though. I really hope it clears up soon. Will you be going in for blood draws before your next cycle?
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Romansma, I'm sorry you're having trouble. Are the SE getting worse each week? I thought the week off was supposed to bounce you back? Praying for you!
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Romansma,
Sorry to hear about your bone pain. I had a couple of weeks radiation to the pelvic/hip area a year ago, and it did wonders - got rid of the pain - did you already have radiation to that area (I guess you can only have it to the same area once)? Hope you get some relief soon.
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Thanks everyone. I had radiation to my hip and cervical spine last year, but not my lumbar spine. I've had quite a bit of progression since then, but when I saw rad oncologist, they decided it was too much to treat with rads and I should go systemic instead. That's when I went on Xeloda and hated it. I took 3 cycles and quit. I take Oxy around the clock for pain and Celebrex for inflammation. I needed break through dilaudid this weekend. Weird after the previous week of having a few days of needing less pain meds.
I was supposed to redo my labs last week but I've been dragging my feet. Too tired, don't want to go. I am going here in a few and we will see how my counts recovered with a week off. I feel like they must still be low because I'm so darn tired!
I do get frustrated by the fatigue. I've been shuffling instead of walking the last few days. I finally got to the grocery store this morning after my youngest asking me to for the last few days. He's 11. I got home and threw the refrigerator things in and left the rest on the counters. Too tired to put it away! I wish there was an answer to the fatigue. My brain wants to do all these things and my body can't keep up! I still haven't unpacked from vacation and it's been over a week!
All in all, I want my cake and to eat it too! I want a medicine that kicks cancers butt but allows me to lead the active life I want to with no side effects. What's so hard about that? All in all, though, I'm happy with the Ibrance so far. Most of us know the side effects could be tons worse!
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Hope, so sorry to hear this. I know how difficult this is for you especially having small children still around. Kids are so sensitive to us and we try so hard to act as normal as possible. At least you are going to the supermarket alone. I make my DH go with me on weekends. I would be thrilled to be normal again too.
Have you spoken to your MO about this horrible fatigue? Perhaps one type of pain killer would stop the fatigue. I have heard fentnyl patches deliver relief through your skin continuously.
Good luck with your counts today. Just remember we can only do what we can. As women, it is so difficult to put ourselves first and as moms we just want our kids to live as normal a life as their friends.
Please accept my hugs! Myra.
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I'm glad to hear it is not just for first line treatment anymore!
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Romansma,
I hope you can get the pain under control. I had lower back pain that made it difficult to walk a year ago (I was thinking I had a bad back, but discovered the cancer had spread to the bone) - they radiated the pelvic area, and spine (not sure if it was the lumbar or cervical spine, might have been lumbar) and I have been able to go without pain meds for - so far - a year (don't want to jinx myself, keeping my fingers crossed). So the radiation was very effective, and I can now go walking without pain. I wonder if you should get another opinion - maybe there is a way to control the pain without being wiped out, since the low blood counts are exhausting enough (I know how you feel, I was "done in" yesterday after food shopping)!
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I know you guys all know how it feels, so I dump my frustrations here instead of on my family. I do think pain control is still an issue for me. I think radiation will be an option again once the progression is stabilized. I haven't had anymore scans since end of last year, so I should be due for one soon. If things look like they are evening out, I think I'll ask for another consult with RO. I didn't have a great experience with the last rounds of radiation on my spine. It caused horrible pain in my arms, probably from a nerve being affected. I also got the most horrible sore throat and couldn't eat for a couple of weeks. I was told that wasn't the norm to get the awful nerve pain, but still! Anyway, thanks for the suggestions. It would be good to get some rads and be able to cut back on the pain meds at some point. Or, maybe Ibrance could do its magic and wipe out all those nasty vertebrae tumors! I found myself worrying about my future mobility this past weekend. Scary.
I am going to email my MO now to get lab results before I start on 3rd cycle tonight. Hang in there everyone. So glad we have BCO to come to for info and support!
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Romansma,
Sorry that you had a bad experience with the radiation. You may have just had back luck with it, but I also think it makes a big difference who you go to for the radiation - If you get radiation again, make sure you get the best doctor, and maybe a couple of opinions on what should be radiated, and possible side effects given that yours were such tough side effects the last time. When I was first diagnosed, I wanted to go nearby for convenience, but I was glad my sister convinced me to go to Dana Farber for my first radiation treatments since they were great even though it was tough driving in there. I was unable to get Dana Farber for the radiation treatments I had again a year ago, but I must have been lucky again since the radiation I got locally actually cured the pinched nerve in my back and enabled me to walk without pain again. Even though the cancer has progressed over the last year, the pinched nerve hasn't returned so far, which has made a huge difference. The treatment was every day (15 min) for 2 weeks.
Some people also swear by acupuncture for pain relief for back pain - never tried it, but I know someone who had great success with it. My mother said they offered it to her at Mass General for her cancer, and I imagine it is available many other hospitals.
I hope the Ibrance helps, and try to get some rest although it is not easy with kids - even a short 1/2 hr nap helps when things seem overwhelming. I tell myself and my kids not to think about everything they need to accomplish (too overwhelming) but just keep constantly chipping away at the to-do list, or the math problems, one by one… I compare it to the Red Sox winning the World Series despite being down all those games - they did it by forgetting the score and just focusing on each pitch - Pitch by pitch is not as exhausting and gets the job done.
Praying you will get relief soon.
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Femera SE might be causing a lot of your discomfort. I just came off femera 2 months ago fm risingand could not believe the difference I can walk down stairs now like normal person was going 1stair at a time. I also was shuffling and legs so weak. Now on tamoxifen and no joint pain. Dexamethazone 1mg daily. Only now I notice a change in mental state I seem blue not as comfy and relaxed as I was. Sure it's the tamoxifen. Faslodex is also used with Ibrance
Wonder if that would work easier on you. Good luck
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Holly, your baseball analogy made me smile. I'm a HUGE baseball fan and it's had such a positive effect while dealing with cancer the past 4 1/2 years. To be brief, my favorite team, the Giants, made it to the playoffs in Oct 2010. I was in the midst of my initial diagnosis that month. With each bit of bad news about cancer, I'd come home and watch the Giants keep winning. They won the World Series that year and I know it's the only thing that kept me sane during that very difficult time. They one it all 2 more times and this past October I took my youngest to game 7 of the NLCS and it was something the two of us will always remember. They got their ticket to the World Series that night and my son ( he was 10) got to live it up on The Embarcadaro with all the fans that night. Such a great memory
My lower back and hips are really hurting today. Hard to be up and about, still hurts laying down. Oxy not doing much. Contemplating dilaudid right now but don't want to be wiped out. Yes, I suppose it could be the Femara, but I've been on these AIs before and the pain seemed more like joint pain and stiffness. This is a throbbing, radiating pain. If it is the Femara, I'm in no hurry to chuck it because maybe it doing its job. I don't have many other choice besides IV chemo and I'm not in a hurry to sign up for that. Still waiting for response from my MO. I guess I'm hoping it's a temporary flare and will go away as suddenly as it started.
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Holly, your baseball analogy made me smile. I'm a HUGE baseball fan and it's had such a positive effect while dealing with cancer the past 4 1/2 years. To be brief, my favorite team, the Giants, made it to the playoffs in Oct 2010. I was in the midst of my initial diagnosis that month. With each bit of bad news about cancer, I'd come home and watch the Giants keep winning. They won the World Series that year and I know it's the only thing that kept me sane during that very difficult time. They won itall 2 more times and this past October I took my youngest to game 7 of the NLCS and it was something the two of us will always remember. They got their ticket to the World Series that night and my son ( he was 10) got to live it up on The Embarcadaro with all the fans. Such a great memory.
My lower back and hips are really hurting today. Hard to be up and about, still hurts laying down. Oxy not doing much. Contemplating dilaudid right now but don't want to be wiped out. Yes, I suppose it could be the Femara, but I've been on these AIs before and the pain seemed more like joint pain and stiffness. This is a throbbing, radiating pain. If it is the Femara, I'm in no hurry to chuck it because maybe it doing its job. I don't have many other choice besides IV chemo and I'm not in a hurry to sign up for that. Still waiting for response from my MO. I guess I'm hoping it's a temporary flare and will go away as suddenly as it started.
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Hi everyone, I was catching up, reading through the posts and know what it's like to experience these painful flares. When I was first diagnosed last fall, I had to undergo a spinal decompression and fusion as my back was in such bad shape (had been treating for back pain and compressiom fracture for 8 months before lesions finally showed up all over my spine after 2nd MRI!). Anyway, I had 14 rad treatments after, which significantly helped the back pain. I go to PT and after a session, I have a lot of pain, not just muscular. I think any type of overexertion, be it bending, walking too far, doing too much, just exacerbate are aches and pains. Romansma, the fact that you were on that vacation just little over a week ago, could definitely still be catching up with you. It's hard to accept that things I was able to do previous to this diagnosis without a thought and I took for granted are such deliberate, thoughtful, planned out tasks now. This diagnosis is not about a journey for me, it's a mutha-effin living nightmare. JMO
A thought about food shopping - I shop online with my local grocery store and then just pick it up when it's ready. It costs an extra $10 a week but they always have coupons and incentives, so I rarely end up paying that. It is the best and relieves a lot of stress for me.
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You are so lucky you can shop on line. Some people even have home delivery. We have nothing. You would think here in florida we would have something with all the old people down her, but no.
Hope, good point about just being on vaca and all that walking at the concert. Perhaps something got moved out of whack? Myra
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Hi Ladies I have been out of touch for a while. On a well needed vacation in the Carribean, but now that I'm back to work, I'm paying the price. Late nights Monday and today and a Continuing Ed class yesterday. Did go to my onc on Monday for my Glutathione and Vitamin D. Am very nervous since I had my markers taken and am very anxious to see the results. I am praying that this continues to work since it is so much better than what I was on previously. And for the first time in 20 months I have hair. It was so great wearing my own hair on the beach rather than the wigs I wore previously. Will know on Friday when I get my Vitamin C and D if my markers are down or hoping at the very least, stable.
About the Femara, I also have severe stiffness, but no pain. When I get up in the morning I can barely get to the bathroom without stretching first. When I've been sitting for a while at work and get up I can barely walk. But I still have issues with neuropathy from the Halaven I was on previously, so the stiffness is only an added difficulty. But I'm not complaining. I will continue to deal with this rather than some of the treatments I've been on previously. Again just praying that it works.
I love the in home food delivery. We have a delivery in the NYC area called Fresh Direct. When I was in St. Thomas I was able to compelte my order and have it delivered the morning after I came home. It's only $6.99 for delivery. I put on my Facebook page a while back that the 3 best things to happen to me in the past year are Fresh Direct, Uber and finding a good cleaning person. It's amazing what these things can do to make life easier.
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You guys are making me smile today! JJ, yes! I'd never refer to this as a journey, I like your term much better! We have grocery delivery here, I just like my routine of Costco and Trader Joes. I need to get over myself and start using the delivery service. I'm too tired to cook most nights, so I don't don't know why I worry about picking out just the right produce, etc. anyway, I've thought it could be everything I tried to do, but why didn't I feel it immediately after whatever it was that caused it. I was tired after the concert, but didn't feel the specific pain I have until 3 days later. Oh well, I've decided to give this another 5-6 days to see if it relents. If not, I will get in to see if MO can figure it out. Just hate the whole dog and pony show that happens when you report escalating pain. More appointments, scans, etc. not in the mood for it all!
So, I was still in bed at almost noon and starting to feel depressed. I got up, threw some jeans on and went down the street to get a manicure. Thought it would make me feel better. Not! I couldn't get comfortable sitting. Finally got done and had to sit to let them dry. I was really hurting in the really cool looking lucite chair and decided they were dry enough. Not! I messed them up trying to pay which was the last straw. Couldn't stop the tears at that point. The lady must have thought I lost my marbles. Had her take the polish off quickly and got myself back home. Felt like a frustrated 2 year old.
Anyway, MO just emailed me to let me know my ANC was ok to start the new cycle. It's only .8 which is after 7 days off Ibrance. Not far to go once I start again. Anyone do ok starting this low? Anyone know if the pain could be my marrow trying to produce wbcs? I know this happens with Neupegen and neulasta. Could it have been so low that it's having to work hard to catch up? Grasping at straws here, but really want to think this is temporary and not something bad.
Good vibes coming your way, Pearl. Hoping tumor markers are down, or at least stable. Get some rest soon!
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Romansma- Is it possible that you have a fracture? I hope not, but that kind of unrelenting pain reminds me of when I had fractured vertebrae. Nothing helped. Except radiation, finally.
I hope you get some relief soon.
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Yes, that has occurred to me, Sandilee. My last scan said most of my vertabraes were "fully infiltrated". Disturbing, but it wouldn't be a big surprise. I hope not, but if it's still the same or worse next week, I'll go find out.
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My MO took me off at .8. Made it to 18 days this time. He said protocol was not under 1.0. I don't know how you are starting so low. He was not concerned that we are starting and stopping. My body was getting used to it. RN said if its doing this to the WBC hopefully it is doing worse to the cancer cells. Me too! Hope, give yourself some slack. We are like pressure cookers.
Welcome back pearlady. I don't know if you read but the vit c and ashwagha worked fabulously on my platelets. Never went low this time. Stayed in the normal range totally.
Try to keep smiling all. We are in this together and here for each other. Myra. 😍
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Thanks everyone for the travel advice. I know it may not do much but I found an "ionizer" that you wear around your neck that people swear by...It was $59 on internet so I am going to try it...I am not worried about a cold, I am worried about being sick 6000 miles away from home.
Also I would like to say that I have had no side effects from Ibrance/ Femara since I have started taking it at lunch...If I have a sandwich, I take one half the sandwich and eat. Then I take my meds and eat the other half of the sandwich...I don't know if this makes sense but it is dissolved in food for sure. Anyway, I am doing great except for low white counts. and I appreciate the feedback that other MD's are not too worried about that...Also my tumor markers have dropped to 8/ So I am pleased and hope I can help when possible. Carolyn from Music City
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Romansma, I enjoyed hearing about your Giants - I remember when I first got cancer, my son did a book report on a book about Giants pitcher Dave Dravecki - what an inspirational story about his comeback and battle with pain and cancer! I hope you get an answer to your pain soon, but I know what you mean about the dog and pony show - ugh! Bring some reading and try to keep your mind off it.
I have been trying to go grocery shopping during the week and avoid it on the weekend since it's always mobbed - I try to go early in the day when it's less crowded. I like Trader Joes - good produce, and it's small so I can be in and out of there quickly. Also love their flowers which are very reasonably priced and might help lift your spirits. My 2 pink magnolia trees out front just went into full bloom - that too always gives me a boost, it is always the first sign that spring is finally here!
Carolyn, sounds like you are all set for your trip, have a wonderful time!
Myra, glad pear lady's ashwagha (whatever it is?) and vit c worked for your platelets, that's great to hear.
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FYI to all those thinking that Femara may be causing painful SEs:
In 2011 when I was first put on Tamoxifen I couldn't move after three days of taking it. After during some research I learned about E464 (Hypromellose). It is an inactive ingredient. I had to switch manufacturers.
When I was just put on the Ibrance/Femara, I found that it is used as an inactive ingredient in Femara also. So I had to do my investigating and found that the Teva brand of Letrozole (Femara) does not contain the E464. Every time I reorder with my pharmacy I have to specifically ask for the Teva brand. No automatic reordering.
Just wanted to share this information in case this small change could make a difference for someone else
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Ah, so much sharing of information. I love it! Holly, I AlWays buy cut flowers at Trader Joes! They are so inexpensive and it brightens my day.
I'm surprised at the differences in how MOs are treating low counts. I read something that Pfizer put out on how to handle the counts. I will have to find it and put a link here. I think I am questioning starting a whe new cycle at .8. A bit worried about where this goes.
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Romansma- Have you been able to have a real conversation with your doctor after your blood work? It sounds like you got info that it was ok to resume, but you didn't have any input. Would it make sense to give him a call and ask if you might hold off for another few days and see if your counts could come up? I think if you're worried (rightfully so, imo) your concerns should be considered.
My doc didn't seem to think that waiting another week until counts come up again decreases the benefit of the therapy. I don't know what his threshold is yet, as I'm too new, but I do know that he said if my counts aren't high enough, we just wait another week until they are. He seemed to think that would be no problem.
I assume the Letrozole is continued, regardless, as that isn't the thing lowering the counts, so you still have that.
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Chiming in on the lower back pain... I'm on my off week after round one of Ibrance and the lbp is kicking in. I had the pain, which included sharp pain in my thighs, then it eased once I started the Ibrance. Still no sharp pains but that familiar dull ache is back. Carol1 maybe it is the Femara. I started it with the Ibrance.
I consulted my RO when I was having the sharp pains and it was determined that the spots on my spine were relatively small - so the side effects/downside of the rads may outweigh the benefits. Sure would be nice to have some days without that nagging ache though.
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Sandilee, my MO seems to be of the same opinion as yours. Waiting a few more days til the counts come back seem to be of no consequence, and yes you do continue with the femara.
Hope, Sandilee has a good idea about having a good conversation with your MO.? Does he/she know how fatigued you are? Having concerns about starting up again, (IMO), is warranted.
Since many of us are having some pains, maybe it is the medicine working. Yesterday though, literally felt like my old self, went to the mall, bought something's and ate lunch out, all by myself! Something I have been afraid to do since dx. Shoot, (could use stronger expletives, LOL), we truly are guinea pigs.
Have a sunny and pain free day all...Myra
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PPAP thank you for the information about the Femara. I've been down the road before with some generics having less side effects than others. And from experience Teva is known to have some of the best generics. My only concern is that since I get it from CVS Caremark along with the Ibrance, rather than my pharmacist, that it will be difficult to request but I am definitely going to try.
Myra I'm so glad that the Ashwaghanda and the Vitamin C are working. My platelets have been good also. Also I've been taking Floradix (liquid iron) every other day for the low red counts as well as Maitake drops twice a day and my hemoglobin has been much better. Only issue is the white counts, but they didn't seem to go as low this past cycle and my onc was not really concerned.
Romansma I hope that you get the pain under control and are feeling better soon.
Hope everyone has a pain free day.
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Table 2. Dose Modification and Managementa – Hematologic Toxicities
CTCAE Grade
Dose Modifications
Grade 1 or 2
No dose adjustment is required.
Grade 3b
No dose adjustment is required.
Consider repeating complete blood count monitoring one week later. Withhold initiation of next cycle until recovery to Grade ≤2.Grade 3 ANC 3 (<1000 to 500/mm ) + Fever ≥38.5oC and/or infection
Withhold IBRANCE and initiation of next cycle until recovery to Grade ≤2 (≥1000/mm3).
Resume at next lower dose.Grade 4b
Withhold IBRANCE and initiation of next cycle until recovery to Grade ≤2.
Resume at next lower dose.Grading according to CTCAE Version 4.0.
ANC=absolute neutrophil count; CTCAE=Common Terminology Criteria for Adverse Events.Monitor complete blood count prior to the start of IBRANCE therapy and at the beginning of each cycle, as Except lymphopenia (unless associated with clinical events, e.g., opportunistic infections).
- Grade 1: < 2.0 x 109/L (< 2000/mm3) and > 1.1 x 109/L (> 1500/mm3)
- Grade 2: < 1.5 x 109/L (< 1500/mm3) and > 1.0 x 109/L (> 1000/mm3)
- Grade 3: < 1.0 x 109/L (< 1000/mm3) and > 0.5 x 109/L (> 500/mm3)
- Grade 4: < 0.5 x 109/L (< 500/mm3)
So, here's what I get from this info. If ANC drops below 1.0 during cycle, no dose reduction or withhold needed unless there is a fever. If ANC is below 1.0 prior to starting new cycle, you can consider waiting till it recovers over 1.0. Basically, grade 3 Neutrapenia PLUS fever/infection is the main indicator here.
My MO gave me the option of delaying the start of the cycle if I thought I had a virus or something going on, but that she wanted to see me if that was the case. I don't think I have anything going on, as far as infection, fever, etc. So, I swallowed that jagged lil pill!
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Romansma, thank you so much for that info! I've been super concerned because my ANC is below 1.0. But so far I'm not feverish so that's good. My onc didn't request a pause or lower dosage so I'm just going to go with that and hope I get all the benefits of the Ibrance Now to just make through that cross-country plane ride next month. Cotton gloves here I come.
Pearlady, looks like I'm taking the same liquid iron supplement as you are. I'm also taking 2,000 mg of vit c. Would you mind telling me how much Ashwagandha you take per day?
Thanks much
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Good information, Romansma. Your take on it seems sound to me. I just hope you get your pain figured out, which probably has nothing to do with the medication. How are you feeling today?
I'm on day 3 of the Ibrance/Letrozole combo and so far the only SE I have is headaches, and I'm pretty sure it's the Letrozole. I woke up with a doosey, twice, and it took a couple of hours to go away. I can deal, I think, if that's the only SE.
I'm hesitant to try any of the supplements that some of you women are taking, specifically the Ashwagandha, since it apparently can lower blood pressure. I'm already pretty borderline with that, so I'll wait and see how my white counts do on their own. I asked my onc if there was anything dietary I can take/eat to boost the neutrophills, and he said, no. Not that he knows everything, but since this is a common problem with a lot of chemotherapy that they see over and over, I would think if something works, he'd know about it.
Good luck,everyone. Not sure what I'd do without this site. Go crazier?
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thanks Hope amazing info.
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I just edited my last post. I use an iPad most of the time because it hurts to sit in an office chair at my desktop. This site isn't very friendly with mobile devices and it smashed the table I was trying to post. Anyway, I think it's a little easier to read now.
I'm still in pain today. I'm starting to think something happened. It was too sudden to be a progression. I think maybe I hurt myself even though I can't remember what it could have been. I messaged my MO and told her what's up and will see what she thinks I should do. Until then, I'm trying to take it easy and definitely keeping myself medicated! Gotta quit comparing myself to the me of years past, too depressing!
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Kaydeesmiles I am taking two of the Ashwaghanda daily. Not sure of the dosage, I would have to check from home, but think that its pretty standard. Has really helped to keep my platelets normal.
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PPAP,
thanks for your specifics on rogue ingredients in generics that make us sick...I totally believe this is what happens...I know we cannot all afford the brand names but I wish there was a recognition in the industry that there are ingredients in generics that make us ill. thanks for the info. Carolyn from Music City.
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I just finished my first round of ibrance, My TM's are elevated by almost 100 any body had this. I want this to work so much that this worries me.. I know you are not to go only on TM's but I are usually right on target. This is my first day on just the femera and I still feel good, No real noted side affects except maybe this slightly sore throat yet.
Best to all!
redroan
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Redroan,
One of my tumor markers also increased after the first round (CA27-29 increased from 1138(H) to 1208(H)). Like you, I feel fine so far, just hoping it is working and that the TM's improve.
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Could there be a bit of tumor flare with these meds? Tumor cells in blood as the tumor dies off? Or would this just be wishful thinking.
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"Some women will experience a phenomenon called "flare" with hormonal treatment of metastatic breast cancer. A flare can occur within the first month of therapy and is signified by an exacerbation of the patient's disease. Although it sounds bad, it actually indicates a good prognosis. Typically it occurs with someone who has bone metastasis and is put on tamoxifen. Suddenly the pain is worse than ever. But then it's back to normal soon after. Oncologists think this happens because tamoxifen can actually work initially as a weak estrogen in some women, stimulating their cancer, before it starts to function as an anti-estrogen. A flare can be very scary. A flare can also occur in the tumor markers. This is important to know because your doctor, seeing a rise in the markers, might assume that the treatment is not working, instead of recognizing the flare as a sign that it is working. "
I will look for more information on Letrazole and tumor flare, but we could be on to something here. If this is the case, it could be good!
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Good Morning All, my MO has mentioned flares to me. He said they usually happen w/in the first two months of tx. Let's keep our fingers crossed. My markers went down slightly, like 20 pts, but the lactose dehydranase, which also measures crap in your blood went to normal. So many numbers, between blood counts, TM s etc. being thrown around, so hard to keep them all straight, especially with chemo brain.
Enjoy another blissful, and hopefully pain free day in Ibranceland! Myra.
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Thanks Myra and Romansma for the updated information. I am so nervous to find out my TMs today. Mine are always right on and have been so since day one. My onc did tell me when I started the Ibrance that it sometimes worked very slowly and that we needed to wait a while to see if it was working. I am still within the first two months.
I did check my Femara and I am getting the Novartis brand name through CVS Caremark, so that is good to know. The side effects should be the least on the brand name.
Hope everyone has a pain free and great day.
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Good luck Pearlady.........
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I am joining the club! I just met with doctor and he told me preliminary results of the PALOMA 3 study show an improved benefit with Faslodex. Based on that, he is adding IBrance to the Aromasin and Faslodex I am taking. It seems silly but I am sitting here waiting for my Faslodex and XGeva shots with happy tears in my eyes. Anything that might extend my life and give me more time with my baby boy . . . .
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JFL I totally understand your feeling. We all do. Praying for you.
Myra thanks for your good wishes. I just noticed that you are getting or were on Faslodex. Are you still getting the Faslodex with the Ibrance? Just wondering since I have not had Faslodex yet and I know they are doing trials with Faslodex and Ibrance.
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Was on Faslodex for 2 months prior to the Ibrance. Then switched to Femara with it. Now I wonder if I will get switched back to Faslodex. This Ibranceland roller coaster just had another twist and turn added. Oy! Myra
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Welcome, JFL! This is a very interesting and informative thread, as well as comforting. I'm learning a lot from all the sharing, so feel free to chime in with whatever you're doing. And yes, I totally get your tears. :-)
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Myra- Would you want to be switched back to Falsodex? I don't think that the trials showed that Faslodex/Ibrance was superior to Femara/Ibrance, but that the combo of Faslodex/Ibrance was superior to Faslodex alone. I don't think they have had any trials to compare the two against each other yet. I may be wrong.
If it were me, I think I'd want to stick with Femara for now, and still have Faslodex in the bag for the future. It's always interesting to see what the doc's think.
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That's what I was wondering if they have compared them. Now that would be an interesting study. I thought that was why they were trying the Ibrance with the Faslodex. I failed both Femara and Faslodex alone. Myra
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I had read that they were trying Faslodex just to widen the pool, the way they did with Aromasin/Femara/Arimidex. To give us more options. So that if someone didn't respond with one, they could try another.
I also heard there was an early trial, I think in Japan, with Aromasin and Ibrance.
In order to really compare, they would have to do trials like they did years ago with Tamoxifen against the AIs, double blind.
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Sandilee I agree with you about sticking with the Femara and hoping that it works. I was NED on Femara for almost 5 years and was wondering if the Femara would be effective again with the Ibrance. I think my onc is thinking like you are, that we wants to save the Faslodex for when I really need it. So hopefully the Femara and the Ibrance works well and I don't have to use up an additional option. I also saw where they are doing clinical trials with Ibrance and 5FU.
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The more combos they approve, the better for us! If it looks like Ibrance works with most things, it really will prove that it's an effective drug.
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Wow, it is so fabulous that you women are so up to date. All great things to keep in my arsenal to speak to my MO about. Thank you, Myra
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Myra the more options we have the better for all of us. I'm thinking ahead that if I don't get the results we're hoping for on the Ibrance/Femara combo maybe my onc would be willing to try a different combo rather than giving up on the Ibrance. I think for the women that have not had Femara previously, there's definitely an advantage.
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I really hope it would work that way, pear.
From the drug companies' perspectives, they would each like Ibrance to work with their money-making drug-not just Femara. I'm sure that is a driver of these trials- it's not all altruistic. But as long as we beneftit- yay!
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Welcome JFL. May this new drug give you, and us all, many more years.
Thank you pearlady for the info on the ashwagandha.
For what it's worth - I was on AI + Faslodex for about eight months with a jagged and very slight downward trend in tumor markers. But back pain got steadily worse over that time period. When I was switched to Ibrance + Letrozole (gonna look into changing brands because these headaches are worrisome) was told that it might make sense to bring the Faslodex back into the mix if I don't get desired results on current combo.
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I just checked my Letrozole and it is the Teva manufacturer. I think it was PPap that brought up this manufacturer as one of the better ones?
Still in pain, but I'm psycho. One day I'm sure it's a fracture or compression, the next I'm sure it's a flare! Today, I want to think it's a flare and this is predicting a good response! Either way, I have messaged my MO and I go in for Xgeva this afternoon so maybe she will be around.
Anyone else here ER positive, but PR negative? Response to these drugs is said to be quite a bit less in those that are PR negative. I think I read the response is typically around 33%. May be why I've failed most of the hormonals so quickly. I took Faslodex with Femara and progressed pretty quick. I think it was 4 months. I'm interested to see if Faslodex with Ibrance may be an option if the Femara/Ibrance stops working.
Hang in there all you neutrapenic ladies! Think maybe we should have some gloves and masks printed up with our Ibrance super logo!
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Hope, I am really not sure what my ER/PR was.I was originally dx'd in 1998, just when all these markers were coming out. I was NED 16 yrs. before I had the stage VI dx last June. I thought I was free and clear. Quite a shock. Myra.
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Yes, Romansma, I'm PR-. But Faslodex worked really well for me for nearly 4 years.
Go figure.
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Hi Ladies,
I got scan results today that showed small spots in my liver (previously NED), so it looks like it's time to switch treatments. I've been on Afinitor/Aromasin/Faslodex and my onc plans to switch me to Ibrance and Femara. Just wanted to get in this thread and see what suggestions you ladies have for managing side effects on this treatment. Also, have you had success with this combo?
Wishing us all the best on this new drug,
Julie
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Hi jnh,
I am on my second round of Ibrance/letrozole - failed letrozole alone, and failed faslodex alone. Not sure yet if the Ibrance/letrozole combo is working, but I can tell you I have not had negative side effects other than low blood counts which have not been a problem for me so far, and the red itchy skin bumps I had with faslodex have cleared up and disappeared since I stopped the faslodex, so that has been great since they were always bleeding. I hope you have success with the Ibrance, it is great not having the side effects. Good Luck!
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Hi jnh, I will reiterate what Holly said. Failed femara and fasolodex on their own. Second cycle of Ibrance, so far SEs mild other than some aches and pains and low counts. Here's hoping you do well. Myra.
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Hi there jnh,
I am also in the group that has manageable SE's but low counts. Have had a decrease in back pain after one round but an uptick in headaches which could be from the Letrozole. Welcome, and I wish you much success with this drug.
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Romansma,
Like you, I was originally ER/PR positive but was ER positive PR negative upon mets diagnosis. Where did they biopsy you? Mine was done in a subclavian lymph node. My doctor said it could be that I mutated or could be that the (small) stain they had for biopsy didn't have any progesterone receptors in it although I may still be PR positive. The jury is still out.
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Greetings ladies, just throwing in my understanding (2cents)re the Paloma trials. I'm delighted Paloma 3 (faslodex) is reporting early. That means lbrance is showing good activity after the failure of a couple of lines of hormonal therapy.
The lbrance and femara trial that got FDA approval originally had only women who were taking a hormonal as first-line. Many drugs are pretty amazing as first line when tumor cells haven't ever been treated or not treated in awhile but resistance can build rapidly with each subsequent line. The Paloma /femara trial was only opened up to women who had failed hormonal or done the a/a combo after the good data was in. I'm not sure how long it will be before this extended access data becomes available on femara and pretreated ladies.
Paloma 3 ( the newest trial) if the early analysis holds, says that lbrance is very active in heavily pretreated women. That's a new insight and wonderful news. So it's not so much about a femara/fulvestrant comparison as it is first line verses third line because that's historically how most of the world orders the delivery of these drugs.
Yeah to trials that are giving heavily pretreated woman a stab at the new drugs!!!
At least that's how I've been reading the trial data 😉
Sophie
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thx Sophie, awesome insight. Myra
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Sophie thank you for that very encouraging update . I had that discussion with my oncologist yesterday about my concerns that Ibrance /Femara wouldn't work as well for me since I was treated with Femara previously. He feels that the Ibrance will work very well and that we can always change what we combine it with .
The good newsis my TMs were stable yesterday. .I'll take that. They initially went down after my first cycle and have stayed stable. I feel great with lots of energy . Of course hearing the good news helped to energize me even more.
Here's to many years of success with Ibrance.
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Congrats Pearlady
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Hi everyone - I have been mostly lurking lately - not feeling so well - but have a couple of questions - initial surgical biopsy showed me ER and PR positive - bone biopsy a year or so later showed me 99% ER positive/driven - does that mean no longer PR positive?
Ibrance and I think faslodex next step for me - currently on Xeloda but I am very sick with it - doc wants me to stay on one week on and one off until early June (scan time) to see if increased dose is working (taking 3000 mg a day, divided). A few months ago they started Zometa infusions and I had very bad reaction with it - they thought it was the Xeloda so took me off for 3 weeks - didn't feel better so determined it was Zometa - I was off bone meds for almost 3 months and felt much better until last month they gave me Xgeva and it has plunged me right back down again - has anyone else had negative response to these drugs? I worry about stopping them as I have extensive bone mets, but.....................I wonder why bones cannot be protected more naturally, with cal/mag, vit D, vit K, etc.
Also, does anyone know if medicare is covering Ibrance if it is not first line tx?
Feeling a bit down today - just so tired of always feeling sick - my head spins with all the things I want to do, but my body just won't cooperate - it seems from reading this thread regularly most of you are not having such bad side effects with Ibrance - but you know, I am paranoid to stop Xeloda, start Ibrance if the Xeloda is working - all these rock and hard place decisions are wearing me out!
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Apackoftwo,
I agree these decisions on switching drugs are very stressful and therefore can wear you out - I have a team of a few incredible friends (one of them actually found out all about Ibrance for me - I am so grateful since I was overwhelmed thinking about a trial with another drug which I probably would have started, or a drug with more side effects) - these friends help me with these decisions, otherwise I find it really hard thinking about the disease, it is exhausting! I have not had any problem with Zumeta and have been taking it monthly for a year since the cancer spread to the bone - will soon be switching to every 3 mos instead of monthly. The only time I had a negative reaction was once when I took it the quickest way (they give you a choice on slow or quick injection), I got a headache just that one time, and sometimes I get a couple of days of achiness, but that's all - the nurse says most people take it well, so your reaction must be very unusual, and I wonder what is causing it, and whether it only affects bone strengthening meds - If so, maybe the Ibrance would be OK for you. So far it seems that for most people the side effects of Ibrance are minimal, and maybe if it didn't work out you could switch back to the Xeloda, but if you are always sick on Xeloda, what do you have to lose - Ibrance might be worth a try. I would bring someone to these important appointments when considering switching drugs, it is hard to make these decisions on your own, and when you are not feeling well. Hope you feel better soon, and good luck with your decision.
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Hello, Everyone. I'm new. I started letrozole recently and then added Ibrance; just finishing my first cycle. I'm really glad we can compare notes. The oncologists seem pretty excited about this new drug.
Did anyone else start Ibrance having experienced peripheral neuropathy from past chemo? Or has anyone noticed any PN just from Ibrance? I have some mild PN from Taxol, and it seems like I've started noticing it more since starting Ibrance. My oncologist doesn't think Ibrance will worsen my PN, and said that sometimes PN can worsen even after the Taxol is done. But I do see on the package insert that PN is listed as a recorded side effect: Ibrance + letrozole 13% vs. letrozole alone 5%. (But I don't quite understand that 5% because letrozole isn't the sort of med that would cause neuropathy.) I worry that maybe this SE is more likely if a person already has some PN to start with -- which may not be a common situation for people starting this drug, so the oncs may not have seen it yet.
Otherwise, so far, so good.
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Shetland pony, I have some neuropathy from chemo and then started on ibrance, I have not noticed any worsening , I am also just finished with my first round of ibrance, Have low wbc and platelets but otherwise this is easy to take.
Someone had a chart on here about when to change the dose of ibrance, My ONC is thinking of changing mine and I don't know that I want it changed. I would like to see that again and maybe I could email to my ONC.
Thanks and good luck to us all.
Redroan
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I found the chart on here, Thanks Redroan
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Shetland pony, I had numbness in my toes and years of bad leg and foot cramping after the chemo, but so far none with the Ibrance.
I try to stay hydrated by drinking a lot of soda water (can't seem to drink as much plain water) - always have it beside me at night and sometimes need to drink it during the night). I try not to get dehydrated since I remember the leg and foot cramping (and occasionally finger cramping) was worse when I forgot to hydrate.
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ShetlandPony I had very bad neuropathy from over a year on Halaven. A great drug otherwise, but very difficult to deal with the nueropathy. In addition, mine was made worse by a previous right foot injury which made the neuropathy much worse in my right foot. I had difficulty walking up one flight of stairs in the subway in NYC. I was sometimes afraid to get up from my desk at work. Really extreme neuropathy. And I'm a former marathon runner.
I have been off of the Halavan for about two months and I am so happy to say that my neuropathy is getting better. Still not what I want it to be or what it was previous to my foot injury, but so much better. I can now walk up three flights of stairs and am not terrified to step off of the curb. I spoke with my onc about my fears regarding the neuropathy and he said although it is listed as a possible side effect with Ibrance, its not nearly as likely as with Taxol or Halaven. Not sure how long the Taxol or Halaven stays in your body once you stop the drug, but I'm thinking the effects can last for several months. This is only my thinking based on other drugs with bad side effects that took over two months to get significantly better.
So good luck to you and I hope that the neuropathy improves with the Ibrance.
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To the Palbo club members:
Have finished two months of the Ibrance/ Femara routine...I feel well, and have lots of energy.
HOWEVER, the platelet count is dangerously low, the WBC is low and a few other declines including tumor markers. I have an appointment Wednesday with the oncologist for a full talk about this..I am afraid of picking up an infection of course but it is hard to think of giving up this magical combo when I feel well. so hard to figure it all out. Am feeling for all of you who are exhausted. That may be a coming S/E that hasn't gotten to me yet. Carolyn from Music City
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Hi Carolyn,
I hope when you say a few declines including tumor markers, you're saying that they have decreased. It's discouraging when the counts are so low, but the tumor markers aren't going in the right direction.
Please let us know what your doctor suggests. Good luck to you!
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Thank you for your responses to my neuropathy question, Redroan, 3Holly, and pearlady. You have helped me feel a little less afraid. That's great that your neuropathy is getting better, pearlady!
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Good morning! I've been too tired to post much lately. Wiped out! I think my pain is coming back in line. I have ongoing pain but it just seemed to spike last week. I feel fairly sure it was a flare now. I'm hoping that is a good sign that this treatment duo is working for me. I'm sooooooooo tired! I'm am fairly sure that's due to the low blood counts.
Wondering, anyone here getting neulasta or neupegen for low WBC? I had followed the trial thread that Babyswim had started, but decided to go back and re read it. Seems that any ANC below 1000 was treated with delayed trial drugs and if it was at the start of a cycle, they received neupegen. Why is neupegen not being offered now? What changed?
I have 3 sick kids in my house right now and I suspect my ANC is below 800 since that reading was the day before I started this new cycle. I don't have a planned blood draw until I finish this cycle. I do wish there was something that could be done to get these blood counts back up. I'm so fatigued, I can't do much and I'm afraid to be in the same room with my kids! On the other hand, I don't want to take a break or lower my dose. I want every opportunity to have this beat this cancer back a bit. So, I think I will just hang in and try to get through it. I'm watching for any symptoms or fever and will jump into action if that happens.
Have a good day all.
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Hi Romansma, Sorry to hear the kids are sick, hope you are able to avoid it. Both of my sons were sick, one very sick last week, took him to doc thinking it was strep he was so wiped out, but luckily not Strep, just a bad sore throat virus and cough. I tried to open the windows a lot to air out the house even though it was freezing around here, and kept hand washing, and luckily have not caught anything. I will ask the doc whether there have been changes regarding the Neulasta or Neupogen at the next appointment beginning of May - am rather tired also, not sure what the counts will be. Hope everyone is feeling better soon!
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sorry you guys around sick kids! So hard not to comfort them. My MO said no to neulasta, said it was contraindicated. If I am not mistaken, I believe Pearlady takes it.
New bloodwork on Friday to start my third cycle. Hopefully I make it all the way thru. Have not been exceptionally tired, except when I overdo like Saturday nite.
Hope, so glad your pain has calmed down.
Take care all. Myra.
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Romansma - very sorry your feeling so fatigued. Just wanted to let you know that when I began Palbobciclib (Ibrance) I started feeling exhausted to the point where I had to go home and take a nap. It got worse with each cycle until my onco. did a test for anemia. Turns out I was anemic - not sure if it had anything to do with the Palbo but I did start taking extra iron and gradually as my blood test results started going up I also started feeling better! Today I am still in the study (Palbo and Faslodex) and blood work shows that I am still a little low but that exhaustion has gone away. You might consider asking your onc to include it in the next blood work if he has not done so. I have not forgotten how tired I was all the time-its was very difficult. Can't imagine how you are handling it, especially with children to look after! Feel better soon!
SusanAnn
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I'm sorry to hear you're so wiped out, Romansma. No advice, but I hope you feel better soon. Impossible to stay away from your kids, though. What lousy timing. Hugs to you
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Romansma - sorry to hear of your extreme fatigue. I am going in Friday for blood work, EKG and physical. I will try and get some answers from the trial nurse about Neulesta or any other treatment for low counts and see what they say. This is my week off and it is nice to have some energy. I too was borderline anemic during the second cycle. Got my RBC up and definitely feel better.
I have moved my trial from Dana Farber to my local MGH, so I am interested to see what their take is on the whole thing with the low counts.
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Thanks guys. I will check with MO on anemia. I just thought she would have alerted me to it if it was low since I have CBC done all the time. I will also try to get a copy of my last labs. Any ideas on what to take if it is low? Constipation is already an epic issue because I take Oxy around the clock, so I don't want to make that worse.
The nurse at school called a bit ago to come get my youngest. Yikes! Feels like I'm playing Russian Roulette with all the viruses around me and blood counts in the toilet. Hard too because I want to take care of them, but I really can't. Got him home and in bed, then washed my hands and went to lay back down. Wiped!
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Romansma checking for anemia is not part of the regular CBC where I go. Apparently it needs to be requested if they suspect its an issue. I used a slow release iron and always had it with my largest meal of the day. Slo-FE is a good one or any slow-release type. It does take a while to build it up. If it is an issue, ask your Oncologist - not sure but I think there is also an injection which might work faster and help you feel better.
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Ok, so, I haven't had iron levels checked specifically, but my RBC, hemoglobin, and hemocrit are all low which points to anemia. However because my MCV is normal, it does not point to iron deficiency, just an anemia caused by red blood cell destruction. This is in line with taking this treatment combo, so for now, there really isn't a lot to be done about it and taking iron won't help much.
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Hope , glad to hear from you. Sorry about the blood issues, i have had the same with carbo also not due to iron definciency. So i took neupogen and had a blood transfusion which allowed me to resume my treatment fast. Also i ate a lot of liver it helped also red wine help a lot in raisin rbc levels lolll not getting drunk just a small glass with meals. I hope you soon get well and that palbociclib is working how are the SEs? I hope the combo is treating you gently. Hugs.
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So glad to hear from you! Don't think I can handle the liver, but I'll give a try on the red wine! Even a little glass buzzes me these days, so I'll take it slow. Good luck with your treatment!
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I started to get tired also these days because of weekly taxol, but i am close to finishing 12 may will be my last dose of taxol and also time for my PET. If all is still clear God's willing taxol will be stopped and will continue on herceptin/ perjeta every 21 days plus one shot xgeva for the bones , it is doing wonders . Also an anti hormonal will be added. We are still discussing which one. We will see the results of scan first. I am keeping my finger crossed and praying a lot for all of us .
There is a shot you can take for RBC but my MO doesn't like , he told me some side effects are really harsh so he preffered one transfusion and it went well . I was like you very fatigued. But like i told i ate stuff at home which helps , artichaukes, lots of green leaves but he absolutely forbid me any iron, he said it effects the efficiency of chemo. Keep me posted on you how you are. Kisses.
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So happy to hear things are still going so well for you. I really hope you get a break from the Taxol! I'm not low enough to need a transfusion, so I need to eat more greens, etc. I broke my juicer, so I think I'll order a replacement part and get back on that. I still drink green smoothies daily, bit I think I need more! Might even have to have some red meat! Something I don't usually eat. Need to get some energy back before summer gets here!
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Romansma sorry to hear about the fatigue. I know how frustrating and discouraging that can be. Thankfully my RBCs have been very good lately. I was advised by my holistic pharmacist to take Maitake drops twice a day, Astragalus twice daily, Squalene (shark liver oil) twice a day and something called coreoxygen also twice a day with a full glass of water. The combo seems to have helped and it didn't take that long to kick in. I tried to confirm with Pfizer and they seemed to think this was all okay. I'm into my third cycle now and the only issue seems to be the low white count.
Hoping that things get better for you.
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Does any one have slight bloody mucus when they occasionally blow their nose? Has happened a few times in the last couple of months, but I wouldn't call it a bleed. Only happens after blowing my nose. Thx, Myra.
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Not me (yet...), Myra. I wonder if it's the Ibrance or the Femara.
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Myra, on the list of "Adverse Reactions ... in Study 1" it shows that epistaxis occurred in 11% of the people on Ibrance + letrozole, and in 1% of those on letrozole alone. Now we know a cool new word for bloody nose.
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Hi Myra,
No "expistaxis" for me either (yet) - but my onc did warn me that a bloody nose was a possible side effect.
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Hi ladies,
I am excited to find this thread, and can't imagine that it is coincidental. I have been on Faslodex for almost a year now, and this month my TM started to go up. After a pet scan revealed some new bone lesions, my MO suggested that we change treatment to Abraxane in May. He mentioned that there was a new drug on the market that he would consider, but that he didn't think my insurance company would approve it since it is considered first-line. I am thinking it is probably Ibrance, and it seems to me that there are several of you ladies who are 2nd, 3rd line and whose insurance companies have approved it's use. I have so far avoided any drugs that cause hair loss since my stage IV diagnosis. I know it sounds ridiculous, but when I tell people that I am stage IV they are always surprised. Even though I have pain, just having hair makes me feel like things are somewhat normal. Of course I would rather be bald and have my cancer gone, but if there is another treatment out there with fewer side effects than IV chemo, I'll gladly take it! (Faslodex was so great as far as side-effects go). So, I am definitely going to talk to my doctor about the possibility of trying Ibrance if my insurance company will pay for it. How many of you ladies are in a trial and how many are taking Palbo with insurance approval? How expensive is it anyway?? Some of these drugs are so crazy expensive!! Hugs, Linda (Romansma, I grew up in Oxnard, Port Hueneme, El Rio)
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Myra1211
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Myra1211: I have bloody mucus too :-/
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Myra
I think it has happened to me twice so far. (Just finished third cycle.) Upon waking I felt the need to blow my nose and bright red blood came out. And that was it. Not a continuous bleed but scary at first. I read that it was a possible SE. So little that I even forgot to mention it to my doctor.
Since I finished my third cycle, my scans are scheduled this morning at 7:15 a.m. Little anxious. I guess that is why I am still awake at 3:30 a.m.
Next hurdle will be waiting the week for the results at my appointment next Thursday. At least beautiful weather has found its way to Pennsylvania!!
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Good luck with your scans today PPAP. I'll be thinking of you!
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Thank you ladies, you put my mind to rest. I am so very grateful for this thread and you all. You answer so quickly, knowledgeably and with love. Thank you
PPAP, good luck with your scans today! Fingers crossed for great outcomes.
Linda, most of us here are second, third etc. line and we all got approved with a Pfizer drug card. I am now paying $10.00/month down from $9000.00....LOL. AND HAIR IS EVERYTHING!
Have a wonderful, pain free glorious day all...Myra.
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Good luck PPAP! I know you are feeling anxious and I hope your scan results are encouraging. You will be one of the first of us, I think, to have film results. I hope this med has knocked the beast down!
Welcome, lindatwo! I am second line, having been on Faslodex for four years. My husband's work insurance has paid the bill for Ibrance- I am just paying 4.90 for my monthly Letrozole. I know I am very lucky that way and hope my luck doesn't run out. Just be sure that the doc's office fills out the specialty pharmacy forms with "Stage lV" in the "Stage of diagnosis" question on the form they provide, and not your original diagnosis. My insurance initially rejected my claim because the office wrote, correctly, "Stage 1a" in the blank, and the pharmacy/insurance company didn't bother to read the paperwork attached that included my mets diagnosis- just rejected it as "not appropriate for stage." While my official stage is and always will be Stage 1a in the medical records, I do have metastasis, and that is what needs to be communicated at the outset. This is a misunderstanding among the various professionals, and can really mess things up if not understood. They never questioned the fact that I had already been treated for my mets. Anyway, glad you found us!
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Good Evening All! Finally got in to see the Integrative MD. As promised, I am thrilled toshare his insights. I thought he was very knowledgeable and inspiring. He helped with the last part of the triangle to get back to ultimate health.
1. Exercise: 20-30 minutes of cardio 5 times/week
2. Andrew Weil's Anti-Inflammation Diet. (Can be found on the Internet)
3. Pearlady, he totally agreed with your MD. He wants me to continue with Vit C, Ashwagandha and Astralagus. He wants ONLY high grade supplements like Solgar, Gaia, Solaray.
4. Cancer killing imagery meditations. I have always done this at bedtime for at least 60 minutes. It helps me sleep well, and he agreed.
Those are the highlights, I hope it helps you all also. Best to all. Myra.
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hey Carolyn,
Another Carolyn here.
. Finished my first month on Ibrance and my platelets tanked - 15k! Required a platelet infusion. Curious how low anyone else is going with WBC and platelets?Thanks all!
Carolyn
Oceanside, CA
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Thank you Myra, I think I will e-mail my doctor and see if he will re-consider Ibrance. Did your doctor's office or insurance company do the foot work to get you the Pfizer card or did you do that on your own?
I am so thankful for this site and all of the help I have received over the years from everyone here. Even though I rarely post, I frequently check in to see how everyone is doing and to get new info.
About the hair.........yes I can deal with losing it if I know that is my only alternative, but I just remember how LONG it seemed for it to grow back, I hated wearing a wig, but hated the way I looked without it. I have a very small head, so scarves and turbans just make my head look smaller. I considered getting a liner, but it is very hot here in Nevada. Ah well, one day at a time!
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sandilee,
I am glad I found you too!! Thank you for the info on insurance, I will be sure to talk to the office staff at my MO's office if my doctor agrees to try Ibrance. My insurance company helped me with getting Afinitor through CVS specialty pharmacy.
I am a little confused about staging. I always thought that once your cancer had metastasized to more than one area that you were stage IV. I've never quite understood the "a", "b" part of staging either. Maybe you can clarify that for me?
I am wondering how your hips survived 4 years of Faslodex! Although I think it was the easiest treatment I've ever had, my hips took longer and longer to recuperate after each injection. It seems like it takes the whole month to finally start getting over the soreness. Years ago when I was in the hospital for 2 weeks receiving injections every 4 hours, my hips finally got numb and stayed that way for a couple of years! I'm wondering if that eventually happens with Faslodex.
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Hi everyone, I got back from vacation (Italy) Sunday and took my first Ibrance that evening. So far, so good, I think--I've had a cold or something since then, but my onc didn't think it was related to the Ibrance after only a few days so I guess I just caught something traveling. It's not fun, but what can you do? At any rate, glad to be adding the Ibrance to the letrozole and hoping for some good results.
Myra, I had the nose thing, too, for the first couple of days. It seems to be better now, though.
And lindatwo, Ibrance is my "second line" treatment and it was approved by the insurance co, no problem. I went online and got the Pfizer card myself (it's a really simple 1 minute process) but if I hadn't, my specialty pharmacy had councilors who are supposed to help navigate things like that with the patient.
Glad to hear so many of us seem to be doing well!
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linda two, why is your MO not allowing Ibrance? The Pfizer card is simple on line, as Rosestoeses said, less than a minute. Let me try to explain staging, since that is my career. I am a cancer epidemiologist, weird huh? Your stage at dx is your first line dx and determines your first line tx. Staging has now added the letter determination to add an addl line: nodal involvement, tissue involvement or type and differentiation. When it leaves the localized area (stage 1), there are other stages. Stage two tissue invasion w/o nodes, stage 3 with nodal involvement and then the big one: stage 4 with distant mets: lung, liver, bones and brain. Your original stage really only stays with you when and if your disease progresses. I hope that helps!
Rosestoeses, Italy, I love Italy. Been to Rome,Venice, Florence, Naples. One of my favorite countries.
Well, MO today for blood work and TMs. UGH!! Myra.
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"Your original stage really only stays with you when and if your disease progresses."
Myra- I think this is where people get confused. (Had no idea you were an epidemiologist! Awesome!)
Lindatwo- What my onc says is your original stage is always your stage. When you progress, they report your original stage plus metastasis, unless the cancer has already moved into another part of your body at the time of original diagnosis- then you are Stage IV . I am Stage 1a with metastasis to bones and liver.
On this board, we all talk of being Stage IV because it's kind of a shorthand for saying we have or had mets.
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Sandilee, what you say is partially correct, For all intents and purposes we are all Stage VI if you have mets in the four groups I have listed above. Oncs and registrars actually stage differently. We stage with seven subcategories, but all end with distant mets being the end of progression into the major organs and bones. Oncologists stage with only 4 subcategories. It really makes no difference what the label is, it is all the same we have Stage VI metastatic breast cancer. Some people stage with only the original dx, others with the progression.
Yes, the tx are different depending upon the stage, differentiation and type of cancer. Many different things come into play when determining treatments.Myra
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Ah- I didn't realize that both labels were correct depending on who is doing the categorizing.
So glad (not for your sake) that you're with us, Myra!
Liindatwo- My bum was really sore about a year in. Then it seemed to settle down and not react so much. I was taking Benedryl for awhile to keep it from swelling and itching, but down the line I didn't need it anymore.
I'm taking a plane to Chicago this morning with my husband for a work/pleasure get-away. I'll be wearing my cotton gloves on the plane! Hope I can stay healthy. It's been almost two weeks on Ibrance, and I imagine my counts are a little low.
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Good luck on your blood work today, Myra!!
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Sandilee, have fun in Chicago. One of the places my DH and I have on our bucket list. Will be trying the gloves in a few months too! LOL Myra
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Wow, I had a bad nightmare last night, very unusual for me - woke up yelling "help" and woke up my poor husband who had finally gotten to sleep after our electricity kept flashing on and off and failed, apparently some type of weird electrical failure in town, since there was no storm or anything.
I took my Ibrance/letrozole later in the day yesterday because I got very busy - have been taking it early, at lunch, so I am wondering if the dream was caused by taking it later (4:30) since I have heard others on these drugs were having crazy dreams as well. Will go back to taking it earlier, don't want another nightmare. Will see what the counts are next week - thanks for all the advice everyone on improving counts, will keep it in mind.
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Rosestoes I love Italy also and can't wait to get back there.
Wow Myra I had no idea you were an epidemiologist. That must be strange for you. I've not had the bloody nose but I have had blood with my bowl movements (sorry for being graphic). My onc says that is okay and is not concerned. Good luck with your bloodwork today. Glad the Vitamin C, Astragalus and Ashwaghanda are working for you. I agree about the high grade supplements. I get them from my holistic pharmacist who works with my oncologist. I like your idea about the positive imagery and am going to try it. I do meditation also, but sometimes during the week find it difficult to do as often as I should. Will make it more of a priority.
Linda I have had many other treatments as you can see and was able to get the Ibrance approved from my CVS Caremark Insurance. When my onc prescribed it he said that it may not be approved because I am Triple positive and had been previously treated. But no issues thankfully. The thing is that Ibrance has been shown to be effective in women who were previously treated. Linda I know what you mean about having hair and I am thrilled that mine has finally grown back after 18 months on Abraxane and then Halavan. But the ironic thing is that before Abraxane I was on Perjeta for a year and had lots of hair. But the GI side effects were so awful that I wasn't all that upset about losing my hair on the Abraxane and Halavan. I feel as if I'm always making a deal with the cancer devil. But I have great human hair wigs that no one ever suspected.
Hope you all have a great energy filled day and have a great weekend.
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Wow, thank you all for the info on staging......I had no idea! It's very interesting.
pearlady, I actually went on my doctor's website and there was a link to Pfizer, and I saw the application for the card. If my doctor agrees that Ibrance would be a good fit for me, and my insurance will approve it, I will go back and apply. About the hair thing.....I think it's losing my eyelashes and eyebrows that is what really bothers me. When you see these women who are gorgeous without hair, they always have beautiful eyebrows & eyelashes. Do you like the human hair wigs better than synthetic? I hear they are harder to manage. I know what you mean about making a deal with the cancer devil!! (Never heard of Perjeta, is that a chemo?)
Myra, it's not that my doc isn't allowing Ibrance. The last visit I had with him we discussed the fact that my lesions were increasing and my TM was up. We discussed different treatment options and he mentioned the fact that there was a new drug but that he didn't think the insurance co would approve it, He then suggested Abraxane, and we went ahead and scheduled chemo with the intention of discussing it again at that appointment before the treatment, (which is the 20th). I thought I would try to get his e-mail address and e-mail him before that appointment so he would have time to think about it.
Love that you guys are travelling. Hope if I can get on Ibrance I won't be tied down to the chemo chair!!
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Lindatwo, I think you should keep trying to get the Ibrance, it is much better than chemo as far as side effects (no hair loss is definitely a huge plus), and it sounds like the new drug your doctor must have been considering since it now has the FDA approval. I wasn't sure I could get it, and it took a while, but the doctor's assistants at the hospital worked with my insurance company and finally got it done for me. So if you tell your doctor that you want it (if he recommends it for you and thinks it is the best treatment for you), they might be willing to do the necessary paperwork to get it for you. I would start with asking him if Ibrance is what he recommends, and if so, show him the Pfizer card and see if his assistants can help you get approved. Good Luck!
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Linda the human hair wigs are definitely harder to manage but for my type of hair it's much more naural. Also you can use a curling iron or hot tollers. I would typically take it to be styled every 2 weeks . So yes definitely more trouble but looks so natural. I lost my eyelashes and eyebrows on Abraxane but they actually grew back on Halavan . Of course all that being said it's much better to have hair.
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Good morning! Wow, busy thread the last few days! A couple of friends have been trying to get me to meet them in Pismo for the last few weeks and I decided to go on Wednesday. We stayed right on the beach. The weather was perfect. Did some wine tasting Thursday afternoon and then went to the SLO Farmers Market that night. Wow, it was like a once a year festival, but they have it every Thursday. So many venders, bands, and the crowd was huge. Went back with our bounty, opened a bottle of wine and it was girl talk for the rest of the night. I was exhausted, but totally worth it.
One of my friends I met with is also stage IV (we've known each other for 30 years). She gave me some good pointers on recovering some of my energy. I'm refreshed and anxious to start feeling better! Sometimes it's hard to get out of a rut without getting out of your surroundings.
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Hope, so happy for you! You sound like a new woman, ready to face the day with a smile on your face. Enjoy this wonderful feeling. Myra.
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Hope, so happy you had some relaxing with friends time! It works wonders for the soul! Susan
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Hope where is Pismo? For me the beach is so healing. Sounds like you had a great time. Love the wine tasting.
Finally the weather in the NY area is warming up. Today is the first day I was able to have my coffee on the balcony. Certainly not the Caribbean but after the terrible winter we had I'll take it.
Mya I tried your suggestion about visualization meditation before bed. That and some aromatherapy with relaxing music is helping me to relax.
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Pismo Beach is in on the central coast of California near San Luis Obisbo. It has become my 'go to' place for quick getaways over the last several years. It's a sleepy little beach town that hasn't been spoiled by development yet.
I got myself some new supplements yesterday that I hope will help bring up my counts and ultimately, my energy levels. The pain seems to be back where it was the last couple of months, so I'm fairly sure that was some kind of flare. I'm also hoping that means there is either some bone healing happening or it was a sign that this combo is working. I will take either!
Someone mentioned bad dreams on this combo. Mine have calmed, but they still appear every once in a while. I still take my dose at night after dinner. Still hot flashing often. My vision seems affected too. I've been using an iPad mini and had to switch to a full size iPad because I can't see! Blurry even with glasses in the last couple of months. I've been using eye drops, but even with that, I tear all day. I remember this when I took TAC. It looked like I was crying 24 hours a day. Anyone else notice changes in vision on this combo?
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Myra- I hope your blood work looked good on Friday. Are you good to continue?
Eyes a good so far, Romansma, but it seems like our SEs can come on gradually, so crossing my fingers
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hey Sandilee, CBC rebounded beautifully including my platelets! I think the supplements really helped. Weird TMs one went up and one went down. This is really a roller coaster Started again Friday nite. How was Chicago? All this travel made my DH and I book a trip to Montreal and Quebec while the exchange rate is good. We have not been there.
Hope, nothing with eyes yet, but I have been wearing my readers more.
Enjoy Sunday all, Myra.
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Great news about your counts, Myra! Does your doc do CEA? It's the only one mine does, as the others seem to read normal regardless and CEA has been pretty reliable for me.
Still, I n Chicago , leaving this afternoon. Went to an wonderful concert last night at Symphony Hall. During the day we visited the Chicago Institute of Art, which is truly amazing! If you have any interest in art at all, it's a must-do. Best museum in the country for modern art, and every great you've ever heard of is represented.
I'm still,feeling well. My scalp is a bit itchier from letrozole, I bet, as it is drying.
Myra- so you're taking astragalus and ashwagandha? How much do you take? I have really low blood pressure naturally, so the astragalus concerns me--- but I'd love it if it saved my counts.
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the CEA went up and CA 15 went down. Both of mine are abnormal. I hope nothing changes because I have not finished one cycle yet. Got to 18 days last time. Hopefully full cycle this time. I take Ashwagandha twice daily before meals. I do bkfast and dinner. Astralagus, 2 capsules between meals and 1000 mg vit c twice daily. Today I went back to the gym finally. 25 mins, 5 miles on the bike. I was beat, but felt energized. I was a gym rat prior, but a slug for the last 9 months. The interventionist MD said a Duke study recently showed 20-30 mins of cardio/5x per week greatly improved tx for breast cancer pts, especially with mets. I finally feel like I am taking back some of my control. Myra.
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Wow, good for you Myra! Happy to hear counts are recovering too. My treadmill has been calling to me.....but so far, I've had no problem ignoring it!
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Myra that's so good! I love it that you are taking your life back. I really do. I love it. Keep it up. Don't let cancer snatch it away again. Be a warrior, and please keep sharing what you do. I just know it will be good for everyone to hear. You go girl! I'm still looking forward to your MD trip and coffee or smoothies and yackety-yacking.
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me too
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pearlady & 3Holly,
I am definitely going to call my doctor's office tomorrow and see what i can do about starting Ibrance. Then maybe I won't have to worry about the wig for now at least!
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Romansma I don't notice any change in my vision from this combo, but my vision has been not great for a while. I always attributed that to constant use of either the computer, Ipad or phone. But who knows. I'm sure all the combos I've been on haven't helped. The beach town sounds wonderful. We have lots of beaches nearby in NJ and NY, but they don't sound nearly as nice as where you go.
The Astragalus, CoreOxygen, Squalene, and Ashwaghanda have been keeping my Platelets and Red counts good. I don't take the Vitamin C since I get weekly IV C. I also take Maitake drops twice a day which is suppossed to help the red counts. I usually take the Floradix (liquid iron) three times a week for the iron. Don't want to take every day because of the constiptation. The only issue has been the low white counts. I have not done any neupogen recently. Am trying to avoid it even though my onc is okay with it.
Myra so glad that you are taking your life back. Sometimes when I feel a bit tired and really not motivated I literally force myself to get out of the house. Usually once I'm out my energy rebounds. I think with me some of it is attitude.
Have a great day everyone.
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About the blood counts: How often and at what point in the Ibrance cycle does your onc order blood tests? I think my onc and onc nurse are just working out the new routine.
During my first cycle, they checked my counts on day 22, i.e. after 3 weeks on and beginning my week off. I didn't pay much attention. But then the nurse called a couple days into my second cycle and wanted me to come in for a blood test because of those counts, and asked if I had a fever (no). And she said we would check blood counts every two weeks for the first three months.
So I did some research and found out that my day 22 white blood cells and neutrophils were grade 3 low. Yikes. I found the Ibrance information for physicians and it said to test before each cycle and on day 15. But I wonder why they don't recommend checking on day 21 or 22 when we would expect the counts to be at their lowest.
What I really want is a predictable schedule for blood tests since going to the cancer center is pretty much an all-day affair. That way I can schedule everything else, like scans and appointments, on those days, too.
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ShetlandPony, my MO does bloodwork every 2 weeks, and I think TMs too much. Very close to the Ibrance recommendations. Grade 3 can be kind of dangerous for your ANC and platelets. Glad they will be watching more closely. We are really the beginners of this drug. Myra.
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Hello, Hope everyone is enjoying life to the fullest.
I started my second round of Ibrance on Thursday. The first round I felt great. Did have low wbc and platelets after but I felt good, Less back pain and leg pain.(I am not superstitious but I always hate to say I feel good because something always happens.) This round since Thursday I have more aching and pain in my back again. Anybody else had this, It could be the weather too, I hope. as it has been gloommy and rainey. I was just wondering if anyone else has had this. If this is as bad as it gets I can do this,
Going to see Garth Brooks on the weekend,trying to live life to the fullest , hope you all can do the same.
Redroan
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hello,
I will start on Ibrance Wednesday, will post how I progress.
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last week at MO, I told him how great I felt. Actually got our of bed w/o pain in the AM. after starting up again, achy too, are we killing cancer? Let's hope so!
https://www.facebook.com/ldistaulo/posts/101010626...
Have a great day all....Myra
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Welcome, Max, looking forward to hearing how you are doing.
Red roan, yes, I had a pretty intense pain flare starting my 3rd cycle. It has since let up. I've read that the Letrozole can cause flares and if the Ibrance is doing its job, it is making the Letrozole much more effective.
As far as a schedule for checking blood counts, Pfizer said day 15 and before starting for the first couple of cycles and then just before starting after that. No need to check at the end because you are off the Ibrance for a week at that point, so your counts should be recovering.
I've started some liquid multivitamins and minerals along with electrolytes. Hoping it helps with energy levels and blood counts. I've been trying to stay active, but it's hard. Making sure my kids and dogs have something healthy to eat and clean clothes is about all I got right now. Looking forward to being able to do a bit more soon!
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Thanks, everyone contributing to this thread (and Romansma, for starting it.) It's so informative and really helps that I don't feel so alone trying this new drug.
I hope your energy comes back soon, Romansma. Try not to let it get you down, as I can imagine it's frustrating not to be able to do what you're used to. Good luck with the supplements.
Welcome, Max otto!
I'm still on my first cycle, only two weeks in, so I'm pretty new and don't have a lot of feedback to offer. I feel good so far. I have awakened with a few really bad headaches that I attribute to the Letrozole, but once I get up, have coffee, cereal and an Advil, it goes away. Doesn't happen every day, but since I am not one to get headaches in general, it's a new thing. I did make it to Chicago and back home without incident and with plenty of energy. I do have a sort of itchy scalp and eyes are just starting to water a bit more than usual.
My onc asked that I come in for blood work "before I start the next cycle." He wasn't specific about the day- just said "Don't start again without seeing me." He said if my counts were too low, we would just wait until they come up. He seemed fairly relaxed and matter-of-fact about it. I'm glad he didn't want me to come in earlier. It makes sense to me to check right before you're suppose to start a new cycle and after the counts have had a chance to rebound a bit from the week off. I'll see how that works out in a couple of weeks.
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I have also been getting my counts checked right before and approximately day 15. I go on Thursday and am sure that my platelets are low since I've had a few minor nose bleeds which I know is from the platelets. I've been a bit lax about taking some of the supplements but have started again today as they really do help. So hopefully by Thursday will be a bit better. I have minor headaches also and was not sure if it was from the Femara or from the Ibrance. But usually with two Advil it goes away.
My onc had said that he would not delay the Ibrance but may reduce the dose if the counts are very low. This is my third cycle and compared to other drugs I've been on, this is not difficult. I just hope that it continues to work.
Romansma I hope that you get your energy back but glad that the pain has subsided.
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pearl lady, are you sure the nose bleed is from the platelets? Several of us have had bloody mucus. I had one 2 days prior to having my counts done and the platelets were perfect. Myra.
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sandilee,
Fyi. I have been in trial with this combo since last june, i dont really know if i am on the drug or placebo. I had alot of itching in scalp and skin i even got sores on my arms and chest. This went on for 3 months then they lowered the dosage to 100mg. So far no itching. I had the sores biopsied and it showed drug reaction. But so far i am stable . Two weeks ago pet scan showed nothing that had uptake...i am thankful. Hope this helps you. Linda
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Myra I am almost certain its from the platelets because I had the same thing on Abraxane. Very minor actually and would probably not pay attention to under normal circumstances. Typically when I start taking the Ashwaghanda and Vitamin C like I know I should it gets better in a few days. Also, I missed a week of my IV Vitamin C. But I've taken the supplements since yesterday, so I'll know for sure if it clears up. WIll let you know when I have my counts checked on Thursday.
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pearlady- The reason I think my headaches are from the Letrozole is because they started before I started on the Ibrance. I had been taking the Letrozole while waiting for approval. Also, headaches are mentioned as a possible SE with Femara.
Thanks for the info, Linda! I'm hoping the itching goes away on it's own. The sores sound pretty bad- hope I don't get those, too. Fantastic that you're stable since June!
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Hello everyone,
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Romansma, Thank you , I hope this is what the pain and aches mean. I hope it's working for us all. Last month no extra pain pills, This week not so much. Took and extra yesterday and one today.
Still trying to be super mom and made supper. Meatloaf,baked potatoes,fresh asparagus and morel mushrooms. Pretty good if I don't say so myself. But standing that long and doing dishes after kills my back today. But I wouldn't change a thing.(except my back and you all know the big C.)Love my boys!
Sorry, Just sharing , I hope you all have a great night.
Redroan
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Hello all.. Just checking in with all of you. I am just starting cycle 4. In the trial I am on I will now go to blood work every 30 days instead of 15. My blood counts all improved this past month, not by much but enough. I am still on the full dose. I am still slightly anemic but, my iron count is fine so just sticking with lots of leafy dark greens to keep my RBC up. Thanks for all the Holistic tips from everyone. I haven't been able to get to my naturopath yet, but will soon.
I still have the nose sores, which my MO said the other day that they are from the low WBC. I am trying my best to keep my hands away from my nose. I don't need another bad cold as I just got over one that lasted a month! I work in the dirt ( landscape designer) so I am wearing disposable latex-free gloves. I change them all day long and throw them away. Wasteful, but keeping things cleaner as far as that goes.
I have two months left of Ibrance with tamoxifen and then I have to consider a switch to an AI in late June. I am just getting used to this combo!
All the travels sound great! I just got back from NYC to see American in Paris on Broadway. Keep on trucking everyone and good luck to all the new Ibrance users.
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Hi Ladies!
I just found out today that the mets in my right and left (R>L) neck lymph nodes have continued to progress and have several nodes in my chest/mediastinum that have decided to join the party and like to cause me bouts of chest pain and shortness of breath, I thought I was having anxiety attacks. I've had a weird breast cancer progression that it should show below so I won't bore you with it.
Anyway, my onco just gave me the femera and ibrance to start tomorrow. I'm very nervous!!! I've read a lot of your posts to try to catch up but 526 posts to read is a bit much lol I was put on femera immediately following my hysterectomy in 2012 but I had intolerable insomnia, fatigue, and leg pain the same with afinitor. I could finally tolerate the Faslodex and had no progression for two years. I'm just now switching from aromasin that I have been on for 1 year. What we are hoping is that some of the SE's were made worse or stemmed from the hysterectomy.
Sorry I'm a little long winded about it I'm just super nervous. I've been in a major rut the last couple months (partially do to canceling my wedding and being a single mom with a tween with ADHD) Maybe now that I know it's not anxiety or panic attacks I'll be able to handle the random chest pain and SOB better, they kinda freak me out to tell you the truth.
So far I've seen from your posts that it's best to take about dinner time with minimal SE's. I've had trouble with my immune system including a month long hospital stay last year from being septic so I know I really have to watch my counts. I know vitamin C can help, any other tips or tricks for me?
Thanks!
Amber 😊
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Lenn, are you saying that your blood counts are getting better just with time on Ibrance? I'm hoping that's the case!
I'm on day 10 of Ibrance and day 10 of a bad head cold, at least I think it's getting better, which is good, because I've been starting to wonder if this is just what life on Ibrance will look like for me.
Glad to have you all sharing your stories--as new as this drug is, it feels like there's not so much people reallyy know for sure.
Asly, welcome and good luck!
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welcome Asly, sorry you have to be here, but welcome. This thread has some very informative info given by some extremely knowledgeable women. They really take the time to research and share. On Page 17, I shared some info from an Integrative MD, i saw for guidance and advice. Been following it diligently and my energy has increased 3 fold (spent 4 hrs at the mall yesterday). Look back at as many posts you can, you will learn a lot!
Rosestoeses, I hope you feel better real soon! Tons of vit c and zinc.
Lenn, DH and I are planning a trip to NYC this summer. We do my favorite kind of tour there: EATING! 2nd Ave Deli, Ray's Pizza, Little Italy, Russian Tea Room. Aaaaaahhhhh, I can taste and smell it now!
Wishing you all good smells and smiles today....Myra.
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Asly welcome and good luck with Ibrance. I hope that you find this combo tolerable and most of all, that it is effective. I really feel very little side effects and even when my counts have been low have felt very good. I work full time and have not had any issues. The only minor problem is mild headaches, which I assume is from Femara, but actually has been better the past week and I'm half way through my third cycle. I was on Femara for five years previously and recall that other than some joint stiffness I really had very little side effects. But we're all different. I also take supplements recommended by my integrative oncologist and holistic pharmacist. I believe they have helped me tremendously with my energy.
Myra let me know when you will be in NYC. Maybe we can meet for lunch or for coffee. Yes you are right, the food here is the best and so many choices.
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https://m.youtube.com/watch?v=Ehm4HLnr-F
Linda714, was that a NED scan? Wow, inspiring! Welcome to all the newbies. This thread is getting to be pretty active. So grateful for everyone's input. I'm feeling a little better. Not where I want to be, but I'll take it! My goal is to be like Myra and be able to walk around the mall for 4 hours!
Headaches. I've been getting them in the afternoons, sometimes when I wake in the morning. Interesting that it might be the Letrozole. Might be a good sign that it is having the effect it's supposed to have. I remind myself of that little tidbit every time the sweat is rolling down my neck from the hot flashes!
Asly, I had a difficult time with the AIs after having my ovaries removed, too. I think it was all too much for my body to be slammed into menopause and subsequently denied ALL estrogen by the AI. My cognitive status took a nose dive during that time that was really hard to handle. I've had some time now, and I don't work (for money, at least), so the side effects are a little easier to deal with now.
Roses, hope you get over that cold soon. It will get better! Get some vitamin c and zinc going.
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Hope, not all the mall 4 hours was walking, there was lunch and coffee in there too....LOL. But I am feeling so much better with my new regime. I have actually lost 1 1/2 lbs, but dont want to. Need to add more carbs to my diet. Myra
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Rosmansma, since i am on trial they call it stable and continue meds. I still have alot of doubt or trouble understanding that. The only thing on the pet was a lung nodule that has been there the whole time , same size and no uptake...so not cancer. When you are on the. Trial they dont use pets only ct scans and i cant take the iodine so they do them plain. My ca15-3 stays around 36 but that has been the same also. So next month i get new ct and we shall see...nothing on the last one either. I dont want to toot my horn too soon but looks good so far. I have had alot of side effects so three month ago they reduced dosage to 100mg but i dont know if its the real Ibrance. Severe itching and sores on arms biposied drug reaction.
Linda
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Pearlady what is the Vit. C for? Do you get the IV from your oncologist or a natural physician? I would think at the very least it would go a long way to detoxifying some of the many chemicals/poisons we have been exposed to over the years of tx. Thanks, Susie
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Roses - blood counts are improving slightly and there are less dramatic changes during the month. The trial nurse told me they have seen this happening.. That is why I don't have to go every 15 days for blood work now. They are still low for me but definitely not like they were the first few cycles. I am getting another cold, though... Just got over one that lasted for ever but like I can fight this one off maybe.
The new trial nurse I have is really up on alternative treatments and interactions with Ibrance. She was the first one to tell me that I was taken off Borage Oil because it was an inducer of CYP3A and it would have made my 125 mg dose seem like 150 mg plus.
Myra- I did eat my way through NYC. Got into the new Danny Meyer restaurant at the new Whitney called Untitled, a Caribbean restaurant called Ms. Lilly's and Telepan up near Lincoln Center... And I was only there two days!!! American in Paris was awesome if you can fit in a show between eating destinations. Love the Russian Tea room as well...
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Redroan
I got to enjoy the Garth Brooks concert with my nieces and nephew when he was here in Pittsburgh. The show was so exciting I didn't feel any pain standing up for the entire show. Came home with laryngitis from all the singing along. Go and have fun making those memories!!
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So, it sounds as though the blood counts may not be as dramatic as our bodies adjust to subsequent cycles. I sure hope so!
Good for you Ppap, glad you got to enjoy the concert!
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Susie I get the Vitamin C from my oncologist. I originally started this last year since my onc suggested it as being anti-cancer. Now it seems that it helps with the platelets also along with the oral supplements. I also get weekly Glutathion which is suppossed to help with the detoxing. Also helps very much with energy, which is one of the reasons why I think I haven't had low energy issues on this combo.
Romansma and Lenn, it makes sense about the body adjusting and the counts not being as low once your body adjusts. I am going today for Vitamin C, so I will get my counts checked. Am hoping for the best. I feel good and haven't had the nose bleed issues since Monday.
Its a beautiful day here in NYC. Have a great day everyone.
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Good morning! It's nice to see so much activity on this thread, and it seems like people are getting the drug with no problems, finally.
I just noticed that this site has added Ibrance to their targeted therapies and we can add it to our treatments in our signature if we want. Cool.
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After completing my first three cycles of Ibrance I had a CT scan last week and my follow up appointment with my oncologist yesterday. Unfortunately, Ibrance is not working for me. My tumor marker increased 30+ points and the tumor grew 1 cm.
Please don't get discouraged by my results. It feels like my entire life I've always been the 1 out of a 100 when it comes to negative things. Wish I could hit those results on the lottery - but not.
So my next step is another visit to the Hillman Cancer Center in Pittsburgh to see if something else is coming down the line.
I wish all of you good health, strength, and peace.
Blessings,
Penny
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Penny, so sorry your results weren't better. Hopefully the next tx will knock it on its socks. Best of luck. Myra.
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Shoot Penny, I'm sorry! Let us know how your doing and what's next for you. Hope you have a good weekend.
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Penny I'm so sorry that the Ibrance didn't work for you. I know how disappointing it is to fail on a drug that held so much promise. Believe me, I've been there also. Please let us know how you're doing.
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Penny, that is disappointing, for sure. I'm so sorry. We're all just treading water here, hoping that this thing works for us, but certainly no guarantees.
Yesterday I had a very specific burning pain for several hours in my chest, very close to where my original tumor was. I'd never felt that before. Today it's gone, but i feel little prickles around my liver area, where I also have mets. Very peculiar! I hope the med is whacking them down, but one never knows if they're shrinking or growing. We just have to hope.
Best wishes, all, and especially for all of the mother's this weekend. I hope everyone has something nice planned either with family or with friends. We deserve celebration!
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Penny, Sorry to hear the Ibrance was not working, I hope you will find another treatment that works for you - not sure if you've had a genetic study, but maybe this would help you find the right treatment.
I had a genetic study done on my original tumor tissue which they kept (Although doctors said my tumor was not caused by genetics, they said they can sometimes predict how the original tumor will mutate in order to inhibit pathways and escape treatment). Two of those mutations in my study were in the ADK and CDK genes, and Ibrance targets one of those mutations (CDK I think), so the doctor thought it was worth a try. They keep coming up with new drugs all the time to target different mutations, so hopefully you will find another.
My first 2 cycles ended last Saturday, and at my appointment yesterday the doc said my ABS neutrophil count had gone down to .49 (had been 1.2 last time), so I won't be starting Ibrance on Sunday as planned and will have another blood test Tues to see if I can start cycle 3. The good news, though, is that both tumor markers (CEA and CA 27-29) went down (and this has not happened for a very long time), so I think the drug is working (now if I can just get the blood count up so I can restart it).
Hope, my eyes do bother me all the time, but I have had sensitive and dry eyes for a long time, probably from wearing contacts. They do seem to bother me a lot more lately, though. Someone told me fish oil helps with dry eyes (the cure for everything, too bad I am not a fan of fish, but I do try to take the fish oil and vitamin D when I remember).
My side effects have not been bad after 2 cycles, except one day last week - Finally the weather turned beautiful here, so I opened all the windows, and got hit with what must have been huge burst of pollen (I heard there will be many bursts this spring as a result of the severe winter) - the worst allergy symptoms ever - cough, sore throat, severe headache/earache, wiped out, and for some reason severe heartburn - all of which kept me up all night (heartburn may have been due to going back to having a cup of tea for 2 days which I had been avoiding since it's worse than coffee for heartburn). I was much better the next day, so I think it must have just been the allergy, and now hopefully it's just the usual allergy symptoms I always get for 2 weeks in May. The doctor said I can take the Prilosec on my off week, so I will be doing that from now on, then switch to the Zantac when taking Ibrance. Trying to eat smaller portions and cut out fried things, but not ready to give up morning coffee.
I hope everyone has a wonderful Mother's Day weekend!
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Hi there!
My mom will be starting Ibrance + Lezotrole tomorrow. The last four IV chemos were not helping her so this is her next route. She has had malignant pleural effusion around her lungs for the past six months and so that on top of everything else (mets in bone + liver) has been tough. Constant coughing and shortness of breath day in and out is no joke.
We sent an amount of the liquid from her pleural effusion to be tested recently and it came back showing Ibrance as effective for her. Even before knowing the test results, her oncologist had that next on the list & we were waiting for approval on that drug from insurance, so it worked out well.We understand that nothing is guaranteed, but hopefully that finding proves true in real time for her.
Crossing fingers and saying prayers that this new treatment works wonders for her and for all of you!
All the best!
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Hello,
I am following this thread since its beginnings because I am/was on the faslodex combo with Abemaciclib (LY2853219/Eilily) trial (phase 3 study) which is similar to Ibraxane (palcociclib/Pfizer) - there are some differences I guess. Because of all the side effects I had (which all were very similar to what I read on this very useful Ibraxane thread) it is cristal clear that I didn't receive a placebo. I had to pause 2 to 3 times for days due to low counts with 3 blood transfusions in-between, a.o.
I just heard I have 5 new mets to the spine and so, after 3 months, it is already over for me. I'm so sorry for posting this negative message because I hope and I am sure it will work for a lot amongst you! I am just a little oscillating at the moment. Now I don't know either, just like you Penny I am awaiting the next option. There was some namedropping: Afinitor, Xeloda possible in combo with faslodex ... ??
All the best wishes
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Penny and solada, so sorry to hear you're moving on. I guess at this point in the game as stage iv, we all have been there with the hoped for miracle not working out that way, but darn it sure does stink. I hope both of you have a long and successful run with whatever's up next.
I'm still battling this stupid headcold, now on day 14, I just seem to be at a stalemate with it, not better, not worse, just there. I go in a few days to get my blood tested and see if it's low enough to take additional action. At least it means 1 more week and it'll be time for my week off of Ibrance and hopefully a cold-free rebound. Or maybe I need to go back on vacation since I wasn't sick then, maybe that's it!
Holly and Sarah, could you tell us more about this testing you did? Was it something your oncologist ordered or did you initiate it? Where was it done? Did insurance cover it?
Hope you all have a wonderful weekend and Happy Mother's Day to all the mothers in our group
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RosesToeses,
The genetic testing is being done at several places - a huge study is being done at Sloan Kittering, but I had mine done through Dana Farber (the drug company paid for it) and there was another study being done at Mass General, so I'm sure it is available in many places. I didn't realize the hospital had kept the original tumor tissue, but since they did, I didn't need a biopsy or anything, just signed the form. My doctor recommended I do the study, and I'm glad I did. I am trying to get a copy of it.
Sorry about your cold, I wonder if you have any allergy (these are the worst couple of weeks for pollen) which could be aggravating it? Zyrtec helps me this time of year.
SarahS, good luck to your mom, i hope ibrance helps with her suffering.
Solala, sorry to hear the Elilily drug didn't work for you, I heard it sounded promising since I thought the blood counts didn't go as low, but I guess it depends on the patient - everyone is so different and I guess that's why these drug companies are doing so many of these genetic tests to find out which drugs work for which patients.
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Happy Mother's Day All! Enjoy! 👭👬👪 Myra
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Hi Ladies
Just wondering about being eligible for Ibrance in the US. It won't be licenced in Europe until the end of 2016 but I contacted Pfizer (Irl) and they said that my treating physician could apply for the drug on my behalf. However they also said that the programme for accessing Palbociclib in Ireland is open to patients who have already had 4 or more prior therapies in the advanced setting (which isn't much use to me). According to my onc you have to have failed 4 treatments. Is this the case in the States? I'd love to know as I'm due to start Afinator next week and I want to get Ibrance...
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Aoibheann not sure, but I don't think that's the case here in the US. Someone else on this thread may know for sure. I have had Afinitor and it was really not a bad drug and worked for over a year. Took a couple of months to adjust to it, but after that it was not difficult. It's good that we have options.
Finally went and had my bloodwork done today. Was suppossed to go last week but didn't. So today is day 19 of my third cycle. The WBC was 3.4 and the RBC 3.2, HGB 10.6 and my platelets were normal. My onc was very pleased with that. Only slightly low and almost done the third cycle. Maybe its what someone else had said that your body adjusts. I have been taking all of the supplements and will continue to so. I'm thinking that they must be helping. Now I'm nervous about getting my TMs done. Probably the end of the month.
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pearlady, your counts were great. The bloody nose you had mentioned prior may have been the Ibrance SE several of us have been having since ur platelets were normal
Aiobhean, sorry I don't know much about this. I hope you have good luck with all ur tx.
Myra.
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Myra haven't had the bloody nose since last week, so won't think about it now. But I have been taking all of my supplements since then and I'm sure that they helped with the WBC, RBC and HGB. Hoping that the TMs are as good.
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Aoibheann,
No, I don't think that is the case in the states. My onc originally thought I might have trouble because the drug was approved (FDA) for first line only. But doctors have been prescribing it based on the latest trial that shows it helps women who have had subsequent treatments as well.
I have read of women on other sites-this one, too, I think, who are using it as a first line treatment. At this point I think the main requirement is that your are ER positive with metastatic disease. First, second or third line is fine, it appears, after mets diagnosis. Also, as far as I know, it supposed to be taken with Letrozole (Femara). There are trials going on with others- Faslodex, I think-- but I don't think it has been approved with other hormonal drugs yet.
Pearlady- great news on your blood counts! It seems like whatever you're doing is working for you!
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Anyone,
I have had a long history of BC with many reoccurrences but always at a early stage. A few weeks ago, I was DX In this stage. I have only been on Ibrance and letrozole for 5 days, so nothing to report yet.
For those who have experienced low WBC do you avoid public places? What do you do until the counts return to a normal range?
I have read many posts and find them comforting.
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Hi again Max otto,
I just finished my first 21 days of Ibrance and am waiting for my doctor's appointment during my week off. So far, I've been very healthy. I am a little tired, and have noticed a few low platelet symptoms, but overall I've been fine and have not avoided crowds. In fact, I took a flight to Chicago and back last weekend and saw the city. I've been marketing, eating out and going about my normal life. I did wear cotton gloves on the plane, but other than that haven't done anything special except try to get my full night's sleep. I hope every cycle is this easy.
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Max Otto,
I have the low WBC - I am not avoiding public places, but am avoiding really dense crowds in stuffy rooms with bad air circulation. Still going to church though I sit in back where there's more air, and still going to the supermarket, though I avoid it when most crowded. Also try to wash my hands a lot and wear gloves cleaning and gardening. Hopefully it won't be as difficult in the good weather with open windows and doors, and less viruses going around.
My doc thinks time will bring up the WBC, doesn't think anything I eat will do it - I will see at tomorrow's blood test (if not I may have to get on some of PearLady's supplements!)
Good luck with the new drug!
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Good luck tomorrow, Holly!
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Max - I took a tip from this thread too and bought a pack of white cotton gloves for airports/travel since my counts took a nosedive. Someone said they were told by an airline insider that it's not the airplane air that's so bad but surfaces that are sometimes not cleaned properly.
I haven't gone out of my way to avoid crowds.Still you should see me bobbing and weaving when anyone sneezes in my general direction
Hoping for good counts for you Holly!
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Good luck Holly with your appointment tomorrow . For me it's almost impossible to avoid crowds. I work in NYC and take the subway .Haven't really thought about not doing it, but so far so good. Also go to the theater opera and ballet frequently . I guess the supplements are helping. My worst issue right now is having trouble sleeping . Makes for challenging days.
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I carry a package of those little hand cleaning wipes with me all the time. I try not to touch stuff in public, but if I have to I use a wipe afterwards. I tried once wearing gloves in the market and it just isn't worth it. I think I'd wear them on the subway if I traveled that way, though.
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I'm just curious, has anyone had an initial lowering of tumor marker numbers and then have them creep back up relatively quickly? I'm fearful that that might happen with me when I get bloodwork done next week.
My tongue cleared up and looked much better after round 1 and the numbers showed there was a dip. But it's more coated this go round... My acupuncturist noticed it too. Please forgive my paranoia. This whole process is nerve racking.
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kaydeesmile, my TMs went down and then One went up and one went down. Don't apologize, we are all stressed. Myra.
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hello again
I just finished my first 21 days and hoping I feel a rebound in my energy level that several of you have mentioned
I had a few nosebleeds and a mouth and nose sore. I just started noticing a weird feeling on my tongue and food isnot tasting right. I tried to look through the thread- has anyone noticed the change in taste?
Thank you!
Margie
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Thank you Myra, it's so good to feel like I'm not on this roller coaster alone. I'm grateful for you and everyone who posts here.
Hi there Margie - My tongue looks a little different - but so far no noticeable change in taste for me.
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Not really any change in taste. But definitely less appetite . Seem to get full much quicker.
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Hi Ladies!
I woke up with a couple mouth sores and it seems like I have decreased taste today. I am tired today too but I've also been taking care of my dad who had a heart attack Thursday... So it could be that! It's weird to have the mouth sores for me because I never had any sores during chemo. I am so glad I found this thread or I'd probably be freaking out lol
Amber 😊
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That's too bad, Amber. Hope they are short-lived. What cycle are you on, may I ask? And so sorry about your dad. That must be hard on you and your family.
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Amber, sorry to hear about your Dad, hope he is doing better and that you are managing the stress. I had not heard of many mouth sores on Ibrance, hope they disappear soon.
Pearlady, hope that you can get some rest, even a 1/2 hour nap can help get through the day sometimes.
Thanks, everyone, for your words of encouragement - good news is that my ABS Neutrophil count came back over 1 yesterday. I didn't do anything different, guess it just took a little over a week for it to come back, so I will be able to start round 3 today (3 days later than planned). Not sure if they will check the counts again before my appointment June 10. I forgot to ask whether they are using Neulasta or Neupogen with the Ibrance when needed, I will have to remember to ask him that next time.
Beautiful day, hope everyone can get out and enjoy!
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Good news 3Holly, I was delayed with my first round too. Pearlady, my appetite has decreased as well especially at dinner time. Can eat half of what I used to eat then.
Have a good day all. Sitting on a heating pad soon, pulled a muscle in my side yesterday. Ugh, anything else? Myra.
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3Holly I would be interested to hear what your onc says about Neupogen. I always used it when on other chemos and never had any negative side effects. My onc think its okay on Ibrance, but I know that other oncs say no. I tried contacting Pfizer hoping that I could get some clarity there and they referred me to my onc. Very frustrating. So I told my onc's nurse that I would hold off on Neupogen and try to get my white counts up naturally with supplements. And the good news is it sees to be working.
Amber so sorry about your dad. Hope that he continues to do better and that you are taking the time to take care of you. I've never had or heard of mouth sores on Ibrance. There are prescription mouthwashes that you can get.
Going for acupuncture today after work. Not sure its helping my neuropathy, but it certainly helps me to de-stress and sleep better afterwards.Its a beautiful day here in NYC. Going to Tommy Bahama for lunch. Hope every has a great day.
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Has anyone tried or had success with insurance coverage for Ibrance with Faslodex yet? I was prescribed this based on the preliminary research findings published in April but it is not yet FDA approved in this combo. My insurance company denied the request, which is now being appealed. The denial was based on numerous factual errors because the nurse screwed up the application - he had me listed as Stage 2, premenopausal and failed to list my ER+/HER2- status. However, the denial also stated that Ibrance was not approved with Faslodex. When my doctor prescribed it, he said he had already prescribed it for one other woman in combination with Faslodex and her insurance covered it. I am praying this will be covered but do not believe it will due to cost/pre-FDA approval status.
I am in a unique situation as I am taking Aromasin and Faslodex in combination as a first line therapy. (I was dx'd while pregnant with super high hormone levels. Doc didn't believe an AI would be sufficient for me because it would not block the estrogen circulating in my cells, only new conversion of androgens to estrogen. Faslodex was added to address the circulating estrogen in my cells.) My doc initially prescribed me Femara and Faslodex but changed his mind at the last minute. I viewed the drugs as interchangeable so didn't ask why. I wonder if Ibrance would have been approved if I were taking Femara and Faslodex.
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JFL - Have you had progression on the Aromasin/Faslodex combo? If not, why not stay with that and save the Ibrance with Femara for later?
I'm a Faslodex fan, as it kept me stable for 31/2 years, alone. Best part- no side effects. With Ibrance, we are all dealing with low blood counts. It's a much bigger hassle, imo
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Sandilee, I have not had progression and have responded very well and very quickly to Aromasin/Faslodex. If Ibrance is denied, I will end up saving it for later which would not be the end of the world and who knows, may be better. My personal risk tolerance/treatment outlook is to give me the most aggressive care and cut off the cancer at the pass on all fronts and give it no chance to mutate, rather than plug through different treatments. My doctor and I are on the same page with this. I know that many (probably most) view this differently and try to "save" treatments in the arsenal. My husband would prefer that approach as he is concerned about the low WBC counts. Right now, I am back working full time, working out and living a normal life. He doesn't want that to change. However, I am young, with very aggressive and extensive mets and a newborn. I don't mind managing the side effects of targeted treatments as I simply feel fortunate not to be on chemo. Since Ibrance has been shown to double the time to progression, I view it as prolonging my time before chemo is necessary. If I had less liver or bone involvement or less aggressive cancer, I would likely feel differently.
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JFL- I'm glad to hear that Faslodex/Aromasin is working! It's wonderful that you have a doctor you trust and has similar views. I hope whatever treatment you wind up with kicks the beast to the curb.
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Hey all you Ibranceland dwellers! Just got back from MO. Blood counts still low. WBC at 1.4. Lowest so far. ANC at .6 and RBC up just over 10. It appears I'm anemic still, but not necessarily due to iron deficiency. MO seems to think my extensive bone mets are adding to the low counts. Marrow is not working at full capacity. My tumor markers have gone back up higher than when I started Ibrance. Not crazy increase, but up about 18 puts this time. I have a swollen lymph node in my neck that is worrisome, as well as some fullness in my abdomen. Sooooooooo. I think the plan is to stay the course for one more cycle (4) then do some scans and see what we have going on. I'm in no hurry to do much. I'm tired, and I have no need to move on to chemo anytime soon! Feeling a little melancholy. Guess I was hoping to hear my tumor markers were going down and soon I'd be pulling back on pain meds and talking about riding my bike and being normal again. As I type this, I feel the emotion welling in me. Not sure I've experienced a single drug that has truly worked for whatever this beast is in me! I'm not giving up on Ibrance yet, just feeling a little disappointed today. I had such high hopes!
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Hope so sorry that you didn't get the news that we are all looking for. I know how you feel as I feel like I'm living day to day with this and hoping for positive news with the tumor markers, know it can change any day. Hoping that your scans reveal no progression. I note that you are Her2nu negative. Has your onc ever mentioned testing again for Her2nu? I have known two women who were originally tested as negative change to positive after mets. I actually had my mets tested several years ago because my onc wanted to see if Her2nu, ER/PR were all still positive.
My main concern on the Ibrance is that since I've had Femara previously that it may not work as well. My onc told me that if we didn't get the results that we wanted with the Ibrance/Femara combo he wouldn't take me off of Ibrance, but figure out what else to give in combo with Ibrance. I hope that I don't have explore that, but you never know.
I hope that your next Tumor Markers are lower or at least stable.
Also has your
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Hope, so sorry to hear about your counts and exam. Were the counts on your week off? Don't give up yet, try to stay positive! Easier said than done, we are all hoping beyond hope that these meds will work. Sending you as many healing hugs as I can. Myra.
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Oh, crum, Romansma. What a disappointment. But maybe it's just too early to see improvement. The rising markers could be a die-off, and the swollen node could also be acting up because of your white counts. I'm glad your doctor isn't giving up yet! Is he going to have you wait to start the next cycle, or do you start right away? Those of us with marrow mets ( I have plenty) have a harder time getting making blood- it's been that way for me all along, too. I go in Friday for blood work for my first cycle, as this is my week off. I expect my counts are low, if bruising and bloody nose are any indication. But, like you, I can take it if it does the job.
I really hope next month holds better news!
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Sandilee I will drink to that. I hope next month holds better news for all of us.
Yes I'm happy that my counts are good, but that's not the real issue. I'm much more concerned with my Tumor Markers. Mine actually went down initially and then up slightly with the second cycle and then down again at the start of my third cycle. My onc said he is not paying attention to slight swings, so I feel I'm constantly on a roller coaster ride and am now nervous for the results at the beginning of my fourth cycle next week.
Praying for all of us that this drugs works and continues to work.
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Sandilee, thanks for your response.
Romansma, sorry to hear the news. Sending you a hug.
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Thank you for the kindness, everyone. Had myself a little cry and now I'm eating a bowl of corn pops and almond milk. That at should do it! Things could still turn around, I was just hoping to see the beginnings of it. I am on my week off and will start 4th cycle soon. My brain tells me that we should start seeing a trend at this point. I'm trying to be patient. Wondering what your MO would add to the Ibrance if it doesn't work with Femara, Pearl? I know Faslodex has been used in trials successfully, but it's not approved so not sure we could get insurance to cover it. I've also failed Faslodex, though. I've pretty much exhausted everything but IV chemo.
On the question about bio markers, yes, I have seen a few women go Her2 + after progressing. I had a biopsy with my stage IV diagnosis and it did change to Pr negative, but the Her2 was still technically negative. I wanted to send it out for genome testing, but bone biopsies are not great for that. I have suspicion on the Her2 because I've been so refractory on so many of the hormone and targeted treatments. The minute I can get a soft tissue biopsy, I will, and send it off for testing again. Not in a hurry to have it show up in soft tissue, though.
Anyone know of any good immunotherapy trials right now? In California?
Ok, my youngest is getting home from school. Pity party over! Enjoy your afternoon, everyone!
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Aw, Romansma, so sorry it's not showing you good number right now. That stinks. Big time. I wonder if Ibrance is something that can take a while to make a dent? I know some of you have talked about tumor flares, which makes me think maybe, but I guess that's really an oncologist question.
Wishing all of you better numbers (markers, blood counts, etc.) and great numbers.
I'm waiting for my CBC numbers (went in for blood work yesterday). So far I do have the metabolic profile report and all those numbers (gulclose, sodium, etc) are taking a dive but still on the very edge of the normal range, so I'm hopeful for the other numbers, too. I think I've finally ditched the great undending head cold, too, so nothing concrete, but maybe a good sign for those 1st cycle, mid-cycle sort of numbers?
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Hope I recall now when I had my bone biopsy a few years ago that it still came back ER/PR+ but the Her2nu came back negative . My oncologist told me that he was certain I was still positive but that bone Mets were not reliable in testing for Her2nu. I know he's right because I was on Perjeta after that for almost a year and it kept me stable and was still working when I asked to be switched due to the awful GI issues. Of course you don't want to have a soft ttissue biopsy.
I could only get the Ibrance with Femara. My insurance would not approve it any other way. I've not had Faslodex so my oncologist wants to save it but I have a sense it would work better. My oncologist did say that the Ibrance could take a while to work.
Hang in there. It's only your third cycle and 20 points is not very much.
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Hi Pearlady & Romansma, I too am on my 1st round of Ibrance/Femara. I'm praying it works with new bone mets in Feb. Pearlady, I read that you are able to get your WBC counts up on your own and I was wondering what the "secret sauce" to that is. I've been on thiss protocol for just over 2 weeks and I'm starting to get super tired. Would love to know.
My Her2 test has gone back and forth from pos to neg as well. I had a bone biopsy done that confirmed er+ pr- but HEr2 was 2 and they cant do a FISH on bone I guess.
Anyway, nice to be a part of this group...oh one more question. How do you get notifications if someone has replied to a thread you are a part of?
XOXO
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Romansma, one other thought on the HER2 issue. It is pretty common for people who switch to PR - to turn HER2 positive. Apparently, the turn to growth factor pathways such as HER2 shuts down the PR piece.
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Welcome Christine, sorry you have to be here, though it is a group of caring, knowledgeable women. If you look back to around page 16 or 17 you will see a lot of info on supplements and diet for blood counts. Good luck on Ibrance.
You ladies are so up on the markers. When I was dx'd in 1998, markers were just becoming used. I believe at that time I was PR/ER+, HER2+, but I can't be sure since no one still has my records. I should know better, but at that time I was completely shell shocked and was looking at myself as a clinical case. It was not really happening to me.
Well, everyone have a happy, pain free day. Off to learn canasta today, I need something to keep me occupied and mind off this disease. Myra.
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Hi Christine. Sorry you have to be here, but hopefully the Ibrance will do a great drug for you. For the WBCs I take Maitake Mushroom drops. I started with 6 drops twice daily and increased after a week to 6 drops three times daily. Also Astragalus twice a day between meals. The maitake is also said to help with the RBC and Hemoglobin. I also take Chagra mushroom twice a day with meals. Not sure if it directly helps the WBC but it is great for energy and anti-cancer. All of the mushroom supplements are said to be anti-cancer. I just started taking Reishi mushroom also since it is said to be anti-cancer and help with sleeping, which I definitely need.
Myra I have a similar story about no one having my records. When I was retested in 2011 and my Her2nu came back as negative it was a challenge since my onc thought I was still Her2nu+. But their office had lost my original records with my original diagnosis from 1997. When my onc wanted to prescribe Perjeta I had to go to NYU, where I had my surgery, and get my original diagnosis in order to get Perjeta. Not easy as they had lost a lot of their records with hurricane Sandy and had also just discarded records prior to 1997. Luckily after being transferred to many different people I was able to get the original diagnosis. Of course I am now saving copies of everything.
Have a great day everyone.
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Christine forgot to mention that you only need to make this one of your Favorite Topics and then you will receive notice that someone has posted on this board.
Also wanted to mention that my holistic pharmacist just advised me that the black strap molasses that was recommended for helping with the RBCs also helps with the WBC.
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Pearlady, where did you find a holistic pharmacist?! I want one.
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Thanks for sharing your experience with the biopsies and Her2 diagnosises. I've had a hunch for some time now that my original biology may have changed, but since I'm Lobular and mostly bone mets, I haven't been able to get a good biopsy for pathology. I have discussed this with my MO and she thinks it may be the case, as well, but needs proof to be able to give me treatment. Frustrating, but as usual, I must be patient!
Feeling a little better today. My 4th cycle meds arrived today. Oh yeah! Took some Re-Vita this morning that a friend swears by. Hoping I start getting some energy back. Having a hard time sticking with all the separate supplements at different times of day. I'm still taking my digestive enzymes with meals and magnesium at night, but all the rest are sitting in a cabinet. Time to get motivated!
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JFL the holistic pharmacist works with my onc who is an integrative oncologist and believes very strongly in supplments and diet. My onc recommends certain supplements for the cancer specifically, but the pharmacist is so helpful with recommending the proper supplements for things like blood counts, helping my hair to grow and to help the neuropathy.
Romansma I know it is frustrating and you certainly don't want have to have a soft tissue met to biopsy. Bone mets do not usually show Her2nu even if you express it. So a catch 22 situation. My onc has said that once you have Her2nu it doesn't go away, but that it can change from negative to positive with progression.
What is Re-Vita? I go off and on sometimes with the supplements also, but have been on recently. They do help me so much with energy and the blood counts, and I'm hoping that some are also helping with the cancer. I have two vitamin boxes with dividers that I keep on the table. Usually in the morning while having my coffee I fill my lunch and dinner vitamin baggies. Makes it much easier.
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Yes, I was using a pill sorter for my supplements too. Think that last big progression affected me more than I realize. I stopped taking them as regularly as I was. My diet went a bit sideways, and exercise fell off the charts. So! I'm going to make a plan. I'm going to get my husband on board so he holds me accountable. Need to do this! Need to feel better!
On the Re-Vita, it's new to me, so I'm still researching. I just know I need nutritional support for my low energy levels. It was developed by Dr Meltzer in Del Mar, Ca. It's a spirulina algae based liquid that was mainly developed to restore energy levels. Here's a video of Dr. Meltzer
https://m.youtube.com/watch?v=exQubv6h5n0
I will let you all know if I have more energy in the next few weeks. Hopeful!
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Oh, shoot, think I just saw something about multilevel marketing on Re-vita......yikes, hope not. Really not a fan of stuff that is sold that way. I know Meltzer has a clinic in Del Mar and you buy it online. Better learn more about this....
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Hope thank you for the info. Yes I am not a fan of multi-level marketing either. Will read more about it.
I wanted to mention that the Maitake drops come in a very small bottle that you can keep in your handbag. I always carry mine with me, so even if I forget to bring the other supplements, I always have that. I think it's helped me with energy.
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ladies, I thought I was the only one who was going crazy with all the pills and spacing them out. I went from 0 pills to 10/day. I think the vitamins have been helping tremendously. I go for my mid cycle blood work tomorrow and TMS too. I think he does them too much, it has only been 2weeks and too much stress, too many numbers, now that makes me tired and dizzy. I am going to try the pill sorter.
I too have an Integrative MD who works with my onc. The anti-inflammatory diet has helped tremendously also. I don't want to lose weight, but I am because there is very little sugar and no processed food. DH and I are cooking in a lot, which is helping our bottom line and the time we spend together.
Take care all, Myra
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If you don't mind me asking, Myra, what goes into an anti-inflammatory diet? And does it help with AI stiffness and that sort of thing or is it more to keep the cancer itself at bay?
I went to a great lecture by a dietitian from Dana Farber (Stacy Kennedy who was also in "Fat, Sick, and Nearly Dead"), who mentioned that too much dairy causes inflammation, so I've cut back some on that. She was also talking about phytonutrients in a plant-based diet and eating 10 servings of fruits and vegetables a day which also had anti-inflammatory benefits, if I recall correctly--very, very interesting stuff, and it sounds like the science really supports preventing inflammation, at least as part of preventing cancer (the talk was sponsored by Komen for the general public, I felt a bit like a stage iv spy sneaking in to see what the rest of the world talks about when they talk about cancer!).
I don't take any vitamins but the D and Calcium my doctors told me to, but Iended up getting a "4 times a day" pill sorter for the letrazole and Ibrance because it has 28 compartments--it was the easiest way I could think of to keep track of the 21 on/7 off Ibrance schedule (it seemed like something I was just bound to screw up otherwise!). How does everyone else keep track of that without a pill sorter?
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RosesToeses, the Dr Andrew Weil diet is easy to get off the internet. More and more, inflammation and sugar is being promoted as a reason for pain and the growth of cancer cells and then starving them. I have found it very helpful, but in the last 10 days I have been on it, I have pulled 2 muscles. I don't know if this is a coincidence or not. As for keeping track of the Ibrance, my bottle only comes with 21 pills, like the old birth control pills...LOL.
I hope that helps, Myra
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Regarding keeping track of pills, I've used seven-day pill box for the past few years. It's the only way for me to avoid wondering, "Did I take that pill today already, or am I remembering yesterday?" However, I am afraid to store the Ibrance pill in the clear pill sorter because it comes in an opaque bottle; what if it is sensitive to light? I called and asked someone at Pfizer about that, and he said he had to advise me to store it in the original container, and I could talk to my local pharmacist, which sounded sort of ambiguous. So, since I take two D3 pills each day, I just store the Ibrance in its original bottle, and take it with breakfast at the same time as my morning D3. If one D3 pill is gone, it means I remembered the Ibrance. (Then it's letrozole with dinner, and aspirin and D3 with nighttime snack.) I write notes in my planner showing the start of each Ibrance cycle and the week off.
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At the risk of sounding like I worry too much, I have to say I was concerned with how warm the bottle of Ibrance was when it was delivered to me. The Pfizer instructions say "Store at 20C to 25C (68F to 77F); excursions permitted between 15C to 30C (59F to 86F)." Well, despite the protective foam box and packet, the bottle was 82F after riding around in the delivery truck all day in spring. What would it be in summer? So I changed to having it delivered to a local pharmacy since they get their deliveries in the morning, and I go pick it up there. You would think they would be more careful. I mean, we're not talking cough medicine, here. The pharmacist from the specialty pharmacy said I was not the first person to raise this concern.
Agent RosesToeses, great spy work.
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I just got an updated list of side effects from the trial I am on. Not a surprise to those of us on this thread..nose sores are now listed as a frequent side effect ( updated from occasional).
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Rosestoeses, I'm just jumping in at the mention of the anti-inflammatory diet: in my opinion the best all around anti-inflammatory diet is The JJ Virgin diet. There is a book you can get on Amazon (ebook or in the mail). It has changed my life, just as far as aches, pains, and GI issues. You won't lose weight unless you cut calories, but the point is not to lose weight it is to stop the inflammatory process. Just my two cents! Jumping back out of your conversation now....
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Ohhh... Lenn, does your updated side effects list say anything about mouth sores? A couple people mentioned them in previous posts. I just realized that maybe I didn't simply bite my lip chewing--again, four weeks after the last time it happened; and that maybe my lip in another spot didn't just get so unusually dry that it cracked and bled. Two days ago my onc nurse asked if I'd had any mouth sores and I said no. I must be really slow, or in denial.
So what are we supposed to do for this?
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Shetland - yes .. Mouth sores were moved up as well. For the nose sores, my MO said AD ointment. She thought that nose sores/mouth sores, etc were a result of the low counts, but I have not officially heard from The trial nurse/ Mo about that.
I am careful with nasal care as I am not sure the respitory issues you have with this drug are from germs getting into these open sores or not or is it something you just get anyway. I have an open nose sore now and am fighting off a cold but I seem to be winning.
Finishing up cycle four and I have to say, this month I have had no issues with fatigue, etc so hopefully my body is adjusting to the drug.
Romansma, sorry to hear about your issues on this drug. Hope it works out for you with it
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Myra I agree with you regarding inflamation and sugar fueling cancer growth. My onc believes this strongly and has been talking about this for years. He prescribes Metformin, the diabetes drug, for most of his patients. I have been taking it for several years now as there have been numerous studies that show that, especially for women who are not diabetic, it has been shown to have anti-cancer properties. I have checked out the Metformin with the pharmacist at CVS Caremark and there is no indication that it can't be taken with Ibrance.
Interesting about the temperate of the Ibrance during shipping. Since I get the Ibrance from CVS Caremark I wonder if I can get it at pharmacy and if it would be shipped any differently. I'm concerned during the hot summer months if they can control the temperate during overnight shipping.
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Hello ladies,
First cycle done and of all the low counts my onc seems to be concerned with platlets which went from 150 before Ibrance to 96 at 2 wk checkup and now 37 during off week. Was told to stop the meds and see their hematologist for a complete workup. Grrrrr very frustrated!I don't know what this will mean for me and this drug
MYRA- seems you had low platlets and rebounded, did you ever refuce the dose or just waited to restart.
Carolyn- I saw you had similar issue. did your platlets rebound and allow you to continue?
Thanks eveyone for all your help! Told my Onc at Rush Univ in Chicago about this forum I found and she started taking notes on what information I have gathered from all of you!
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hi Irish4, I have been reduced for the Ibrance and I have started multiple supplements and diet to increase platelets which have helped tremendously! Today, 186 halfway thru. Now hoping on markers!
Good luck all. Myra
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oh Myra that's wonderful! I will ask about those supplements on Monday! Wishing you great markers!!! Thank you
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Hello everyone,
I've been continuing to read through all your helpful comments and am so thankful for this board. I am finally starting the Ibrance on Monday after a 3 week delay due to a complicated UTI (bacteria was not sensitive to first antibiotic). My Onc didn't want to start me until it was cleared up. Anyway, I was wondering what time of day you find best to take the Ibrance since it's supposed to be taken the same time every day and whether the time you take it lessens or worsens any immediate SE like nausea, tiredness, etc.
Although I don't have any words of wisdom to share with those experiencing rough bumps right now, I just want you to know that I offer my prayers, support and understanding. We are all in this unfortunate nightmare together, and no one knows better than us what we are each going through and there is great comfort in that. I wish us all well and pain free days.
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jjski62 I have found that taking it with dinner is best for me. I was taking it in the morning initially and felt slight nausea and headache. Taking it night has worked best for me, but I think we're all different. Also, now that I'm finished with the third cycle, the headache and nausea seem to be much less. But really, even taking in the morning, the side effects were not bad at all.
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I am also being treated at Rush and have started my second week on these drugs. On Thursday I will get my first lab work. I think diet can be a factor and requested a nutritionist to review my foods. We do not eat meat, fried foods, and heavily use fish for dinner. I meet with her on Tuesday and have written a general outline on our foods, including restaurants. I have specific questions about the low WBC I see in this forum and what can help boost these counts (foods and/or supplements).
I take these drugs after dinner and make sure I have a dense and caloric meal, not just salad and light food.
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Hi everyone,
I just returned from my oncologist and my first blood work after my first cycle. I finished Ibrance on Sunday, and hoped that by today white counts would have rebounded. Unfortunately,my ANC is 900, which my onc says is too low to start, and he wants me to come back next week for CBC.. If I can get up to 1200, that would be enough to start again next week. He didn't seem too concerned- told me this is par for the course. He also said that dropping the dosage to 100 is a perfectly acceptable option if it turns out that I'm not able to rebound week after week. They have not seen any difference in results between 125 and 100.
So I'll do what I can to eat well and look into supplements. I did buy a mushroom supplement- Coriolus PSP, which I thought I'd try this week to see if it helps. It's one that is suppose to be great for immune support. I don't want to add too much into the mix with what I'm already taking or I won't know what's working. Honestly, I would be fine with dropping to 100mgs if that's what it takes. My red counts were lower too, which explains my tiredness, as were my platelets. But the ANC was the deal-breaker.
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Sandilee, I am on 100 mg which seems to be fine. My WBC and RBS is lower. My ANC is almost down at this point, looks like I will be done again at day 18. My MO feels the same about the dosage, and found out today he was involved with the trial and fasolodex which worked, which just has not been published yet. Another piece of ammo in our arsenal.
Oddly, this TMs were opposite! The CEA went down and the CA 15 went up. This time my ALT, AST and lactose dehydranase all went down significantly. This is a true Ibrance roller coaster🎢🎢🎢🎢
Have a wonderful evening! Having a glass of wine since 5/6 counts were good! Myra.
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Question pearlady: does the reishi mushroom really help you sleep?
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Hi Pearlady. I wish I could give you a good reply but I am only just starting on Ibrance and Letrizol once my insurance clears it. I've been n Affinator and Exemestane for almost 18 months and my recent scan showed significant worsening in my lungs and bones. Can you please tell me how you're doing on this medication. I'm having a hard time with my insurance company approving this. Did you have any problems? Hope you are doing well.
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So interesting how the MOs are handling this differently. I've started every cycle with my ANC below 1000, usually 600-900. She has given me the option to delay, but I haven't.
I'm still in my week off will start 4th cycle next week. Trying to keep my thoughts positive and hope that it just needs time to work!
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Positive thoughts are key Romansma! I struggle with them at times but I'm working at it.
Has anybody heard of any trials that involve Ibrance and tamoxifen?
There is some concern that I still have too much estrogen circulating in my system despite an oomph. I know there is some medical community interest in a return to tamoxifen after trying AIs. Just wondering if a tamoxifen/Ibrance combo could work for my particular situation.
Not that I could evenget it. I have one of those insurance companies that would not approve the Ibrance without letrozole.
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yes there is a phase lll trial going on now. I am on tamoxifen onc is waiting for the data from this trial.
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my MO has mentioned tamoxifen to me since I did so well with it years ago. He said there is research that people in my group are seein g results with it better than Letrozole. Something else for the back of my head, if I remember it! Myra.
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Myra- How many cycles did you do before your onc took down your dosage? I wouldn't be surprised if eventually they start everyone on the 100mg dose.
Romansma- It is interesting how each doc has their way of doing things. Mine didn't give me the option, but as soon as he saw my blood work said, "You're not starting on Sunday." It does mean another trip in for blood next week, which is a bummer. I am feeling a lot less tired today, though, so I'm hoping that means my red counts at least are coming back a bit, as they were really low, too. I've also been eating really well today and will continue this week. I'll probably put on 5 pounds! Three full meals a day isn't my normal routine, but I'm trying to get a lot of nutrition through my diet so I don't have to rely on too many supplements.
Kaydeesmiles- Before I had this option of Ibrance, my onc had talked about possibly trying Tamoxifen after Faslodex. I'm hoping I still have it as an option at some point, and it would be great if it worked. Also, I don't think your insurance is unusual, as most won't pay for Ibrance without the approved combo. Maybe once the trial Carol mentioned is over and it's approved, it will be paid for.
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Carol, Myra and Sandilee thanks much for the info. I'm definitely going to discuss with onc.
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kaydeesmiles, Faslodex is another option to address your circulating estrogen concerns. I am on it for the same reason, in addition to an AI. Favorable early reporting results of Ibrance with Faslodex were released last month from the PALOMA trial. No FDA approval yet but it is coming. Some insurance companies are covering it with Faslodex already, according to my doctor - I am battling mine right now.
Interesting what several of you are saying about tamoxifen. I don't hear too much about tamoxifen in the metastatic setting but It is nice to know it is making a comeback of sorts. I did well on it for early stage too. Will have to keep it in mind for an option down the road.
Myra - What did you mean about people doing better on tamoxifen than Femara in your "group"?
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JFL, I was on faslodex/arimidex for about 6 months. Results were ok but not great. Just kind of treaded water. TM shot up when I began that combo, then kind of a slight jagged trend downward. It wasn't until I started the Ibrance that my back pain went from sharp to manageable.
I've only had one round though so I'm wondering if the TM drop and easing of pain was also a result of having some leftover faslodex in my system battling the circulating estrogen by breaking those receptors down.
I should learn a lot when the numbers come back from next week's appt.
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I feel like this thread moves so fast I can hardly keep up! I don't want to derail the current topics but I did want to say thanks for the replies and suggestions about my questions! (and I also worry about the temperature thing! We don't usually keep the AC as low as 77 when it's 90 degrees outside, so that's been worrying me--I may need to think about keeping Ibrance in the basement or something similar.)
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Good morning all! You must all be on the West Coast. Sandilee, I was dropped after the first course to 100 mg. I didn't even make it to the 14th day. I still am only making it to 18 days, but my onc is not concerned since 5/6 of my numbers are looking good. My onc gives me no option of starting again with low numbers either.
JFL, I meant that I finished the full 5 year course back in 1998, w/o recurrence til just last year. They are considering giving it again to women like myself again to see if they can mimic the results. As I mentioned earlier, my onc was involved in the fasolodex trial, it is finished, was a success, and just has not been published yet.
Kaydeesmile, when I had BC at first (age43), my estrogen refused to leave even after chemo. Tamoxifen seemed to keep it at bay, though bloodwork kept showing I was in forced menopause. Weird huh?
Well, Happy Sunday all, remember do at least 1 fun thing today, be grateful for at least one thing today, and do one kind thing today. Myra.
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JFL and keedeesmiles, curious about where the estrogen's coming from? I had thought that without ovaries it would only come from aromatase but obviously not!
(and Myra, you posted at the same time, I wanted to say I love the "1 fun thing, 1 thing to be grateful for" idea! I'm grateful I was able to set in my seedlings yesterday *and* not wake up this morning to find them eaten by pests, and my husband will be grilling lunch today which is always fun!)
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RosesToeses, circulating estrogen was coming from being premenopausal and pregnant at time of diagnosis. Not sure how long the circulating estrogen hangs around but it needed to be shut down when I began treatment, which AIs don't do. They only address production of new estrogen.
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Thanks, JFL, interesting!
I was premenopausal too, even after all the heavy chemo from stage III--sadly it doesn't seem to be that uncommon here on the stage iv boards, stupid cancer. I was on lupron and Faslodex for a year, though, and still on the lupron now with the letrozole and Ibrance, so hopefully that's that.
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Hi Romansma, We were on A/A at the same time but I couldn't tolerate it as well as it didn't seem to work for me. All my mets seem to be in my abdomen so far. The MO started me on Halaven and Faslodex in June. My TM's are normal and the CT showed NED in January. I'm a little worried however because TM's have been holding steady at mid normal until last test. They are now at high normal. I know Faslodex will not hold me forever, so have been looking to see what may come next. I wonder if Ibrance may be next.
You have been so strong facing this awful disease. I have really admired you.
Thank you to all the strong ladies who have contributed to this thread. It is very helpful. MaryAnne
PS If you have not been on a chemo for MBC, Halaven was pretty easy on me. I suffered just the usual fatigue and peripheral neuropathy.
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Roses, there has actually been a lot of research over the past few years examining the brain's role in he production of estrogen. It turns out that the hypothalamus also plays a key role, not just your ovaries.
http://www.healthline.com/health-news/strange-your...
An imbalance there can be problematic. But I believe my issue was more traditional. A severe imbalance in progesterone levels caused by an extreme amount of stress. A job that kept me going 100 miles an hour and triggered loads of damaging cortisol production. The job also did not allow time for routines that would keep me healthy. I was a workaholic for decades and did not take care of myself as my mind and body aged and needed more attention.
So, stress levels off the charts, little sleep, too much travel, erratic exercise and diet.... All led to progesterone depletion which knocked hormone levels out of balance. Liver had trouble processing and eliminating all the excess estrogen, the hormone got backed up and took over. Combine that with a ERBB2 mutation that came from who knows where and it's a recipe for cancer.
Funny thing is through all of that busy-ness I did get mammograms and did self exams, but wouldn't ya know it I got lobular! So no lumps and did not show up on mammos. Gyn just happened to notice a tiny bit of swelling under my arm during a regular pap. Was sure it was nothing since routine tests showed I was "healthy" but decided to do a biopsy just in case. Annnnnnd here I am.
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I don't think they know Romansma. I think it is still so new. The link above is a recent presentation from the doctor running the small phase 2 trial I am on. It gives a very clear explaination on how the drug works, which was helpful for me to understand it. It doesn't really expand on side effects though. Just thought it might be of interest
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RosesToeses, I like your screen pic
There does seem to be a lot of young women around here.Kaydeesmiles, I had no idea that estrogen was produced by the brain in addition to ovaries.
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JFL, it's still early days in that area of research but the results so far are fascinating. It could eventually open up a ton of possible treatments, not just in regulating estrogen in breast cancer patients, but in using hypothalamus-produced estrogen for Alzheimer's patients.
Sorry to derail guys, I get nervous in the lead-up to new blood work and tend to babble ☺️
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Great info, thank you. Who knew our brains could make estrogen? The Dana Farber video explaining the new trial coming up was good too. Good to see that Ibrance is being considered at an earlier point in the disease process. I think the lack of huge side effects is making this drug the star of the show right now. I'm guessing , if your marrow is in a little better shape than mine, you could feel pretty good on this.
Danish, good to hear from you. Happy to hear Haliven has kept you stable. Hoping that continues, but if not, Ibrance isn't too hard to take. Low counts seems to be the issue, but if you can stay out of danger zone, it's not too bad. Sure could be worse! Affinities was much harder, I must say
I need to go back and see where I was in the cycle with that last pain flare. I seem to be ramping up again the last few days. I may see a pattern developing......just call me Nancy Drew.....or Columbo.....hmmm, I'm aging myself. Need a current day sleuth!
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Good morning everyone. I feel that I am so out of touch having not checked in this weekend. So much new information I need to spend a while to read it all.
Dunesleeper I find that the Reishi combined with other herbal sleep aids has helped me. I have had big sleep issues. I used to taking Ambien, Lunesta or Ativan and will not take anymore. Even though I didn't take all the time, they started having th eopposite effect for me. Ativan helped, but there has been a recent study where Ativan in extended use can contribute to Alzheimers. I told my onc that there's a good chance I won't live that long to see that happen, but my luck I will get the Alzheimers before the BC gets me.
Myra about the Tamoxifen. I took it for 3 plus years before my bone mets in 2001. In 2010 my onc recommended that I take it again along with Aromisin. I took for almost 3 years and in combo with the Aromisin, it was more effective than Aromisin alone. So I think there's good potential with Tamoxifen. For me it didn't get me to NED when I took the second time but helped keep me stable. At this point, stable is great.
I've not yet had Faslodex, so my onc told me that if the Femara/Ibrance combo doesn't work, we'll revisit in the future. I'd rather not use up all my options if I don't have to but nice to know that its out there.
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Thanks Hope, I am trying to digest what they are saying. I don't know if they believe the phase 3 will confirm the results of phase 2 or not. I did like the doubling of overall survival rate, for those of us with mets, I don't think we were expecting it to be a cure, but another bit of ammo in our arsenal to extend our life, until hopefully a cure comes along or major extension of life making it a real chronic disease. Does anyone ever wonder why HIV/AIDS, had such great results with meds and disease suppression and BC has been years and years and billions of dollars w/o the same results?
A lot to ponder, have a great day all.....Myra.
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Myra, I wonder about the HIV/AIDS comparison a lot. I think it has a lot to do with the cocktails for HIV, whereas it's been standard operating procedure in many places (not all) to give BC patients one drug at a time.... or suppress one thing at a time. There is also a huge focus in HIV treatment on protecting and boosting the immune system. I think it should be that way for us too. I'm no expert by far, but I'd like to attack this sucker from all angles with a cocktail - while building up my immune system as much as possible
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I think immunotherapy is where we are going with cancer and I really hope it works better than these incremental steps we've been seeing for decades now.
On the subject of Pablociclib again, the trials have shown a doubling in the Progression free survival, but only preliminary results in Overall survival. The preliminary results for overall survival were not statistically significant and this threatens the continued approval of this drug. In the preliminary results, Pablociclib showed 37.5 months OS compared to 33.3 on Letrozole alone. The hope is that this next set of OS results will show a significant increase in survival.
None of this applies to any of us personally. Some of us will be exceptional responders, others will need to move on quicker. But, I like to keep up with the science so I understand what I'm getting myself in to.
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Thank you Hope. I have often wondered about the HIV/AIDS comparison, but I think a lot of it has to do with that there are so many different types of breast cancer. I'm not an expert on HIV, but don't think that is the case.
Kaydeesmiles I agree with you about the immune system. My onc is an integrative oncologist and believes very stronly in that, which I why I chose him. I truly believe that is why I have been able to tolerate most of the drugs that I've had to take over the years and have had less side effects than many other women. When I first started with him in 1997 there were no other oncs in NYC that offered what he did. Now I think its becoming more common nationwide.
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Thanks for the link, Romansma. It's possible that the Phase III results could impact us personally, I suppose, if no improvement in overall survival is found. The FDA could decide to withdraw their approval, as it was conditional upon the expected results. Although I hope they would allow those who are already on it to continue if doing well.
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Okay you guys, I have to make a choice and would really welcome help. I was on Femara before and it stopped working. Then moved to Afinitor/aromacin for 3 mos of awful SEs, then put on the Veliparib/TMZ trial for 2yrs and 2 mos. with no shrinkage, but the tumors stayed stable. It has stopped working and all my tumors are bigger with a new one in my cervical spine, my other hip (huge one is on one side already! ) and 2 new rib spots.
My onc. Is suggesting I get on a new trial after a "wash out". The new trial is with the study drug from Lilly called Abemaucilib which I would take with Falsodex. The catch? It's a 50/50 for a placebo. Abemaucilib is a CDK 4/6 inhibitor just like Ibrance. The choice? I could just take Ibrance without Femara since Femara did not work. At least I would know I was getting the real thing with Ibrance. There is also a third choice to go on Xeloda.
What would you do? The nurse told me that they will know if I'm on the real thing, not placebo, if my blood counts drop and I feel sick and growth continues as visualized on my scans (Hooray?). At that point I can stop the drug, but time is lost with continued spread of disease. One good thing with the study also is that the company and/or center will cover the costs. Money is unfortunately an issue.
There are few ppl I can TRULY talk to. They say things like, "why don't you get IV Vitamin C?" or "why don't you get German measles or polio injected into yourself? I saw that on TV". Yeah, okay. Sounds good.... I'll do just about anything rights now, but we know in reality these new approachs are not offered just like that.
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Vivian I am in a similar situation to you. I was on Femara for almost 5 years and it did keep me NED along with Herceptin. I moved on from Femara in 2008 when I had progression. I was very concerned starting the Ibrance/Femara. I felt that if Femara stopped working after almost 5 years, why would it work now. But the only way I could get Ibrance approved by my insurance was to take it with Femara. I have spoken to my onc about what we will do if the results are not good. So far everything is stable, but as I said, I'm very concerned and have only completed three cycles.. He said that unless I had major progression, he would then add something else to the mix. Not sure what. He also told me that since the Femara did work for me, possibly getting it with the Ibrance, it would work again. So I'm in a wait and see pattern now also.
I don't see Tamoxifen listed with your prior treatments. Is that a possibility to add, say either Tamoxifen/Xeloda or Tamoxifen with the Ibrance?
My onc has said that he's read that Abemaucilib may be a better drug than even the Ibrance. I'm sure it's a tough decision. You say that you would know if you are getting the Placebo. How long would you have to wait until you know if you were on the real drug or the Placebo?
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Vivian, I am starting my first treatment since IV DX tomorrow. My MO tried very hard to get me to do the same study. I said a big loud BS! I don't think Stage IV people should be included in studies with a placebo 50/50 chance. I told her flat out that I want Ibrance/Fulvesterant combo. She said OK and tomorrow is the day. I understand that trials are necessary, but call me selfish. I'm not willing at this point to be a guinea pig for science.
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Northtexas I agree with you. I am not comfortable with anyone stage 1V having the potential of getting a placebo. The only issue for me was that my insurance wouldn't approve Ibrance with anything but Femara. I really hope that changes in the future as I know they are doing studies with Faslodex and even some chemo drugs.
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Pearlady, I think the timing of my stage IV DX was just at a good time per the ending of the Ibrance/Fulvestrant study. It ended April 15 while I was still undergoing testing. Praying for good results for myself and all you other lovely warriors! Susan
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I am starting the same medications tonight, and would also like to hear from others in regards to the possible side effects. How is everything going with you?
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Susan praying for you also and for all of us. I didn't realize that insurance will now prescribe Faslodex with Ibrance. That's great news. My onc did tell me not worry that if the Femara/Ibrance didn't produce good results he'd switch to Faslodex. I think his approach is why use up a drug that I haven't used yet unless he has to. So far I have been stable.
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That is great news about getting Faslodex with Ibrance. Vivian, is there a chance you could get on that combo?
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Hi everyone,
Thanks for all this great info, this thread really is going so fast and I can hardly keep up!
Vivian, I think you should try to get the Ibrance instead since it is similar to the Lilly drug but the Ibrance is FDA approved so you wouldn't need to be in a trial and could be sure you are not on a placebo. A friend who read about these drugs said the Eli Lilly drug might show the most promise of the 3 similar drugs (Ibrance, LEE01 and EliLilly), but someone posted on this thread that it didn't work for her, so I wonder how the trials are going. My friend said you take the Lilly drug every day (no off week) and she said it prevents blood counts from dropping as much as the Ibrance, but the person who posted on this thread said her counts did drop too low and she had to discontinue, so it will be interesting to see the complete results of the Lilly trials. If you tell your doctor you want the Ibrance (and he agrees it will help you) and you show him the Pfizer card, hopefully his staff will work with Pfizer and your insurance company to help you get it affordably. At least you will know what you are getting. Good luck with your decision!
Pearlady, I don't know how you can keep track of all those supplements - I messed up one day and took Prilosec instead of Ibrance, will have to be careful and keep the Ibrance/letrozole in a separate container. Hope you are getting some rest.
Hope you are all enjoying some nice spring weather!
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Hi mannymo,
The biggest se for most of us initially I think is a significant drop in blood counts. So don't be surprised if some fatigue sets in. It certainly has with me especially after Round 2. Beon guard against germs. It's possible there could be some stomach upset too but everybody's different.Like some of the others I also have headaches that I think are letrozole related. My insurance company is one of those that won't cover the Ibrance unless it is in combination with letrozole.
Holly this weather is the best! Does wonders for my mood.
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Thanks to everyone for your responses. Your advice is so helpful! i am definitely going to check if my insurance will cover Ibrance with Falsodex and I will push for it. Will also look into the Pfizer card. I'm not so interested in Femara again because I think like you, Pearlady, my Femara quit after 5 years, too, why would it work now?
I was told Tamoxifen was not for me because I'm post menopausal (ovaries were removed). I don't believe Xeloda is an Estrogen Receptor Inhibitor so it is not a drug of choice to take with Ibrance. My onc wants to keep Xeloda "in my back pocket" - which does not give me a lot of faith in Ibrance! But, I know, no negative thoughts allowed! We still need back pockets.
I am not too excited about a placebo either. The way I am supposed to know if it is a placebo is because on my first scans I would show more tumor growth and when my blood is drawn it will be too normal (no drops). Oh great! I will have more tumors! I already have "suspicious" spots on my liver. The scans (bone, CT, MRI) will be 9 weeks after my trial starts, I think but not sure.
My onc is pushing for the study Abemaucilib/placebo with Falsodex. Have you guys had any Falsodex experience? I have read the Falsodex Girls thread and it comes with its own problems too!
Again, I really appreciate your input. you guys got me thinking and I am now making of list of questions for my doc.
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Vivian, I think that is a good idea to see if you can get the Ibrance and It should be less stressful than being on a trial and possibly having the placebo. I tried Faslodex and didn't really have symptoms except for itchy red bumps on my skin, but other people said that the bumps can be controlled with creams like benedryl and hydrocortisone I think (i never tried it because once I went on the Ibrance/letrozole and off the Faslodex , the itchy bumps disappeared completely which is great). The Faslodex didn't work for me, but maybe it would have worked in combo with the Ibrance. I hope you get an answer soon, I know it is hard being in "limbo" trying to figure out the next step, but you will feel better once that is settled. Good luck!
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Vivian, I had three and a half stable years with Faslodex. If I could have stayed on it indefinitely, I would have gladly. At first I had a bit of itching for a couple of days after my shots at the injection sites, but after 6 months, they settled down a lot. And even when they were itchy, Benedryl helped a great deal. My tumor markers went from 260 down to 3 within the first year. I think it's one of the best drugs out there, if, and it's an important if, it works for you. There is no drop in blood counts or other blood related side effects. I did have hair thinning, starting about the second month, but it stopped thinning around month four and then grew back entirely.
Your signature shows that you were on Faslodex for a while. What happened?
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Vivian did you ask your onc why he is pushing so hard for the study? Just curious why he would recommend that over Ibrance. Especially when you could take the Eli Lily drug in the future without a clinical trial.
Iteresting about the tamoxifen. When I first completed treatment I was put into menopause from the chemo. So when I started on tamoxifen I was in menopause It did work for 3 years. Not suggesting you take it now, but it's always something to think about for the future. I do know women who have taken after menopause.
Good luck with your decision. I pray we all get good results from Ibrance.
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I think my onc is not really pushing hard for the study, but did show a preference for that decision when I was sent home to think about the options. My gut feeling is that she does not think the Femara will do anything and wants to try me on Faslodex - then she will think about the CDK inhibitors and deal with the Femara/Ibrance pairing. I have always felt like I have been getting the best of care. Now I am waiting for my follow-up appt. to be scheduled as they said they would and I am starting to question my faith in my onc and the treatment center.
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Re: comparison to AIDS
Only a very small percent of the billions raised goes to applied research. Most of it goes to early detection (which really does not cure anything), awareness, and more pink stuff. Last time I hear it was 2%.
I think it should be 30% because: 30% of early stage breast cancer develop into metastatic breast cancer.
The AIDS advocates threw ashes of their loved ones into the white house lawn. They were persistent, and their grassroots movement had no affiliation with big, organized corporations.
What MBC needs is a voice, maybe a celebrity, who will champion our cause and unite us.
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Shoot adverb, well said! If I see one more pink football helmet, yogurt cup or ribbon I am going to scream! We need to stop pussy footing around and get some real muscle behind this madness! Myra
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Sign me up for the March, the Revolution, whatever we want to call it. I'm sick and tired of seeing these new drugs that cost $120k a year and give us an extra 1.7 months of overall survival! Give me something I can get excited about! Give us an extra couple of years, or how about this? Give us a FN cure! Need to find our voice soon. Maybe Jolie? Who else? Let's find someone now and get this moving. I want to be here on this earth in 8 years when my son graduates from high school! Screw that! I want to see him graduate from college, get married, and have babies. Soooooo, drug companies, I'll need a $120k drug that gives me an OS of about 20 years, k? I need a trip to the White House lawn, soon. I'm flipping mad!
Ok, that outa the way. Vivian, many of us failed Femara. Ibrance works by blocking enzymes/pathways that cause the Femara to stop working. So, by taking them in combination, in theory, Femara should work again. I think if it were me, I'd try Ibrance/Femara first before going to the trial. I'm not a huge fan of Xeloda, so I'd save that one for later. Just my 2 cents.
I've been reading about infrared saunas and their health benefits. I went for my first 40 minute session yesterday. Lots of sweating! Hopefully lots of toxins being released! Anyone else done this? Wondering how often would be beneficial. I'm thinking 2x per week right now, but have read some do it daily. Hoping for some pain relief.
Also looking into other alternative therapies to help me feel better and enhance my treatment on Ibrance/Femara. I've tried acupuncture before, but didn't get a lot from it.
K, started round 4 of Ibrance/ Femara last night. As I held that little bottle in my hand with almost $10k of pills inside, I willed it to work! Then I crossed my fingers, my toes, and finally, my eyes!
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Shoot Hope, well said also, let's do it! We have been quiet way too long! And what the heck is an infrared sauna
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Let's do it! Wish I could lead this, but my energy reserves are a bit low. I will find the energy as soon as this army starts mobilizing, though. Can't believe we've been placated for so long with pink crap!
Remember the old saunas that had the rocks and steam? Well this is a little different heat source, but same idea. I'm sure you've read about fevers mobilizing the immune system. Other countries are using hypothermia to do the same. Anyway, infrared has been shown to expel toxins better than traditional saunas. Traditional saunas produced about 97% water and 3% toxins, whereas infrared sweat contained 18-20% toxins and less water, lessening the burden on your organs, such as skin and liver to release these toxins. Then, your bodycan function better, along with your immune system. Studies are showing impressive pain relief too.
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Have started the ball rolling. Sent a PM to the Moderators to add a new thread....we are a huge voting bloc....time to take back our power. Myra
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New thread LETS GET ORGANIZED. Myra
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Nice, Myra! I'm headed over now!
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Great idea, Myra!
I just returned from my onc's office, where I returned to see if my Granulocyets# has come up enough to restart the Ibrance. It has been two weeks now since my last Ibrance pill. Last week my count was 900, which wasn't high enough in his mind to restart. Well....today they were at 800! I have no idea how that happens. So, no Ibrance for me today, boo. And I'm worried.
I go back in a week for another test. My onc did lower my dose to 100mgs, based on these results. I hope this helps. Otherwise, I don't know if I'll be able to stay on the med.
I wish he would just let me go back on it anyway, as some of you here have been able to do so I could at least see if it would work. I'd even agree to live in a bubble.
All of my other counts went up- RBC, hemoglobin, WBC, Platelets...just not the one he cares about.
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oh darn Sandilee. Myra.
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Following links from the Let's Get Organized thread to the Where is the Outrage thread, I came across the website of Metavivor, which I realize I haven't checked out for a long time. There's some very interesting information and research going on, some of which has been funded by Metavivor donations.
One article of particular interest to me and probably to other women here who are experiencing a low neutrophil count due to Ibrance is this one:
http://www.metavivor.org/research/research-news/ho...
It 's interesting that the very cells that fight disease in our immune system can be co-opted to promote disease. Cancer is for sure a sneaky beast! I find it fascinating that they are experimenting with lowering the nuetrophils intentionally to decrease metastasis.
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Hello sisters, I got my first Faslodex injections today and took my first dose of Ibrance. When did you all start feeling SE? And what about hair? Did you lose some or all? Nervous but very hopeful. Susan
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I'm with you, Romansma! I want to see my kid graduate, get married, and have babies! Yes, Adnerb, at least 30% to MBC research and cures! But how can we be activists when we are just struggling to take care of ourselves and our families? Who will help us? I suppose if more people knew the truth about that 30%... My plan is to last long enough for immunotherapy to become available.
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Pearlady, you were wondering about CVS Caremark when we were talking about Ibrance storage temperature. Yes, Caremark will ship it to your local CVS if you choose. I went in to mine and talked to the pharmacist there. She said the Ibrance comes in the same packaging and probably on the same truck, and usually gets delivered in the morning. Delivery trucks often deliver to businesses in the morning and residences later in the day. So I chose to pick up my Ibrance at the local CVS and spare it riding around in a hot truck all day.
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NorthTexas, If you feel well today after your Faslodex injections, you will likely continue to feel well. Sometimes I was a little tired that evening, but not always. I experienced bit of hair loss the first couple of months (noticeable only to me) but then it came back entirely. With Ibrance, only fatigue around the second week. The problem with the Ibrance is keeping your blood counts high enough to continue taking the drug. That seems to be an issue for most of us, but apparently many docs are lowering the dose if it continues to be a problem. Good luck to you! Faslodex alone can work for years for many of us, and if it increases with Ibrance, horray!
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Thank you Sandilee! I love you gals!
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ShetlandPony thanks for the information about CVS Caremark. I am going to call tomorrow to arrange it. Especially with the summer coming.
Hope I know some women that have gone to Germany for Hydrotherapy. I would love to do it. Someone on these boards mentioned that they offer it in Philadelphia at Jefferson. But I imagine it's not covered by insurance. Do you know about the Biomat? It produces Far Infrared rays and gets very hot. My onc has them in the treatment room but i am one of the few that use it. I actually bought a half body mat that I use not as often as I should, but I do love the sweating. My oncologist has recommended it for his patients but some women say they can't take the heat and don't like sitting on it. To help kill the cancer I'll put up with heat. You can search on the Internet. The best ones are said to be made by Richway
Now I'm inspired to go sweat.
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Today was my first lab and this evening my onc called and said I needed to stop the drug. When my counts come back up I will restart with a lower dosage. Are there many of you able to handle the full dosage? I would like to get feedback on what dosages others are on? Do you start and stop this drug frequently?
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Max Otto, I am on the 100 mg and usually get to day 18 before having to stop. Myra.
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Yes, Pearl, I was reading about the Biomat. I'm going to use the spa here for a bit to see if this gives me any pain relief, energy, etc. if it does, I may look to invest in one for myself.
Day 2 of cycle 4, down the hatch! Maybe the heat and sweating will help my toilet dwelling blood counts!
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Hi, im posting this on behalf of my mom. She was diagnosed with stage 4 breast cancer with bone mets 2 days ago. Despite annual mammogram scans, she was still diagnosed at such an advanced stage. She is coping fine and staying very positive, both me and my younger sister we are trying very hard to stay positive also. We are meeting the medical oncologist again on Monday to discuss about treatment options, she did brought up palbociclib during our last meeting and a possible participation in one of the palbociclib clinical trial (btw we are from singapore) but it seems that my mom's blood test shows that shes anaemic and something else (the doctor prefer to elaborate on monday) that might not get her a place in the trial. Right now there are so many uncertainties and its really hard to not feel helpless.
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QiXian Ho,
I'm sorry about your mom. Please know that there are a lot of different therapies that will help beat back your mom's cancer, so don't feel bad if she can't do the palbociclib- I'm sure there will be a treatment plan that will help your mom. Palbociclib(Ibance) isn't all that easy even for those of us with normal blood counts to start with. People are living with bone mets for many years, so don't give up hope. You'll learn a lot by reading some of the other threads dealing with your mom's diagnosis. Hugs to you.
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Thank you sandilee,
Since palbociclib has already been approved and its currently available commercially, assuming that the insurance is willing to bear the cost of it, what would be the difference between taking it in a trial or not? What should i be looking towards given her diagnosis, what is the best case scenario?
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If you are in a trial, you won't be able to choose if you are on the trial drug or not. The trials are blind, meaning you are put randomly in either the trial drug with a standard drug, or a placebo with the standard drug.
What you will want to do is to talk with her doctors and find out which options he or she recommends and why. Discuss the side effects of the various treatments, the doc's reasons for choosing one over the other, and do what feels right to your mom. There is usually more than one "right" choice, especially for someone just diagnosed. Best case scenario? That her cancer stays in her bones for 15+ years and she is able to keep it stable with various hormonal and targeted treatments. This is a real possibility, so have hope and encourage your mom to participate as fully as she is able in the decision making.
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sandilee, thanks much for the link to that article. It is indeed fascinating and could explain why the responses to Ibrance can be so different from patient to patient.
Some of my post round 2 numbers are back and my ANC is in the tank - so I'm hoping that by driving the neutrophils down sooooo low I'm at least targeting the right thing. Fingers crossed.
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Good article, Sandilee. I'd be interested in knowing more about how Pablociclib measures up where TAMs and TANs are concerned. Very complex, indeed. Cancer sure is a smarty pants, eh? Reading that article raises so many more questions. It makes you question what all the numbers truly mean. Is it good or bad that your ANC is low and same for tumor markers. Could an increase in that marker be good, at least in the short term. I dunno! On that note, I think I need some coffee!
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Sandilee thanks for posting the article. Really great article, but it raises so many questions for me. It would seem that what is happening in most cases is that the cancer eventually outsmarts the drug, no matter what drug we are taking. At this point, I'm hoping that the Ibrance/Femara will outsmart the cancer for as long a time as possible and that in the meantime, more new drugs will come along. Or even better, a way to control the TAMS,TANS and Neutrophils.
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All, I need your help! My Ibrance was denied by insurance. In part due to combo with Faslodex but also because the person submitting it stated that I was Stage 2, premenopausal and didn't include my ER/PR and HER2 status. I saw the appeal letter which didn't correct any of the mistakes and didn't state anything about why Ibrance should be approved with Faslodex. It was in bad shape. I have taken on drafting the appeal letter myself. I want to ensure I give myself the best chance of having this covered. Do any of you have suggestions about successful appeals? Any advice is appreciated. I know many of you went through this process already. My circumstances are a little different than most because I am seeking Ibrance in combo with Faslodex which has not yet received FDA approval.
Northtexas and any others on Ibrance/Faslodex, did you have to appeal your insurance company or did they automatically cover it?
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JFL - My insurance denied Ibrance the first time because the administrator wrote my stage as Ia, which was my original diagnosis, and the insurer didn't read the attached pages to see that I had metastasis. Once that was straightened out, it went through quickly.
Your trouble may be the stated stage more than the Faslodex, as the drug has not yet been approved for early stage cancer.
So chances are that when that is corrected, along with your hormonal status you will be able to get it! Much more likely. Who is your insurer? It seems like the only hang up is the Faslodex, and the lousy appeal letter submitted.
I might call Pfizer and see if they have any suggestions. There are trials with Fas that are going well. If you could site these to the insurer, it might help. The drug company should be able to help with their knowledge of ongoing trials. Good luck!
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Gosh JFL, I have no answers for you. Perhaps because Fasolodex has not been released for pairing with Ibrance. I was very lucky, I had no problem getting approved with the Femara
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Sandilee, that article was fascinating. I am in the field though, and I had a ton of questions after reading. Is my ANC good or bad? Is that why most of us who have low counts do not get infections usually when our counts are low. I know some of the MOs have noticed that their patients with low counts have been ok. Do the TANs come in and take over? Wow, lots of questions. Myra
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I noticed in my blood work yesterday that while my granulocytes # was low (0.8), my monocytes and lymphocytes were abnormally high. That has never happened to me before this medication. Very strange, but they may be filling in for what's missing.
I got a call from my onc's NP this morning telling me she sent a prescription to CVS for an antibiotic to keep on hand in case I get a fever. So they are still concerned about my resistance. But I feel great. Damn neutrophils!
I'm going to be very upset if they don't bounce back next week.
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I was only able to complete two full cycles of IBRANCE/FEMARA before taking a rest for 3 weeks . I was able to continue the femora during this period. I go to the Oncologist Tuesday to see the blood levels. was thrilled that the TM's dropped to 6 before I stopped.
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JFL, no I didn't have to appeal. My Dr explained that somehow the 2 drugs were approved separately somehow. Its a really new combination of drugs. Sounds like the administrative people at your Dr office didn't do a very good job for you. Can't they resubmit with corrections made? I'm hoping you can get it approved soon!
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Thanks for the great tips ladies. Dumb question Pearlady...how do I make the thread my favorite so I can get notifications? I keep forgetting and then come back here weeks later and it's like DOH!! LOL.
I had a blood draw only after being on Ibrance/Femara for two weeks and of course my TMs went up! So annoying. I too have not had much luck with treatments and had low TMs for maybe 6 mos.
I still have rib pain so I'm discouraged. I'm on the one week off right now and go back to Onc on Tuesday. At least the TM test appear to work for me.
Hugs to all
Chris
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Thanks for the info, Sandilee and NorthTexas. They can resubmit the appeal. I spoke to my employer and it will go to an independent third party decision maker. The decision will be final so no mistakes allowed. I am drafting the letter myself this weekend for my doctor. My DH is a doctor and used to review appeals through work. He will review it after I draft it. If it is going to be denied, I want it to be because it is not FDA approved, not because of factual errors
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Good luck, JFL!
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Hello, My ONC just called, Tumor markers are up 50 points. Only finished my second round of ibrance, We were gonna wait until the middle of June to do Ct but now it is gonna happen next week. I was really hoping this was the one that was gonna work. Who knows whats next. Really disappointed.
Redroan
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so sorry Redroan and Chris. Could it be flares? One of my TMs went up and one went down. Hopefully mid June they will both go down. Myra
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Chris and Redron so sorry your TMS went up. Can you perhaps stay on Ibrance with something ibe instead of Femara? But i think only two weeks is not indicative. My markers went up slightly after my first cycle and then came back down. My onc has said that he would try it with something else if we didn't get the results he wanted but I'll take stable. Just had my TMs checked today so we'll see. I feel as if i'm living from one blood draw to the next.
Chris you just need to make this one of your favorite topics by clicking on the link at the beginning of the thread.
Chris I see that you are Her2n+ also. I'm curious if you are still on herceptin and if you've had Perjeta. I am still on herceptin with the Ibrance. Most of the women on Ibrance are not Her2nu+. My onc was surprised that my insurance approved it.
Praying for all of us. Enjoy the holiday weekend.
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Hi Folks,
New to this thread and hoping for some insight on Ibrance as my Onc has ordered for bone and now liver mets. In reading the post most of you seem excited about this option but are concerned with managing the side effects. I am finding my self in a quandary lately with cancer treatment as a whole, and have to wonder if the risks with these drugs are starting to outweigh the benefits. I recently read one in three people have cancer of some form. That statistic really resonated with me . I must say honestly, I'm not sure I have much confidence in the FDA as I also have a list of 27 carcinogens they have approved for use in consumer products. So much of conventional treatment is driven by pharmaceuticals. As I was waiting for my scan results, a drug rep came into see my Oncologist to discuss clinical trials being close to publishing, Sometimes I just think there has to be a better way to care for us. Hope I didn't offend anyone I am just really concerned and confused on many levels.
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Redroan,
I'm sorry to hear your doc feels Ibrance isn't working for you. Did he say what you might try next? Best wishes, and let us know how the CT goes and what you decide.
Hi mccall,
For me, the risks of Ibrance are pretty minimal. Mostly, the risk is that my counts won't come up fast enough for me to take it. I feel well on the medications, but when your neurtrophils drop as they do on Ibrance, you don't really feel and differently and wouldn't even know there was a problem if not for the blood work. That's why they do them before each new cycle, but each doc is different with what levels they are comfortable with. I also think it probably depends on the doctor's evaluation of the risk of infection for a given individual, too.
Anyway, good luck to you if you start this one. So far, few on the board have been on it long enough to see any results, since it's so new. We're all sort of test subjects, I think. The biggest problem I see (other than the fact we don't even know if it's working yet) is that we have to have frequent blood draws and wait periods to keep it going. Other than that, it's not hard.
I understand your frustrations, though. It does seem like there should be something, after all these years, to cure this beast. Meds giving us a few more months, or even a couple more years, just don't cut it.
Best wishes.
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Thanks Romansma, I am taking your exact advice and will be starting Ibrance/Femara next week.
I can't agree more that we need a voice - and a different approach to actually finding a cure. I know a real cure is linked into our own immune systems. And you are right that it is hard to get excited about these drugs as a kind of "magic bullet", like Dorothy clicking her ruby slippers. We are far from home.
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Hi Pearlady! Thanks for the kind words. I agree two weeks might be soon. I will know more next week. Originally my diagnosis was Her2-, then after my mastectomy it was Her2+ and now that it's mets to my bones it appears to be Her2- again. 😓. We also tried Herceptin/Perjeta but it wasn't working. Sigh..
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Romansma, how are you doing? How long have you been on the new meds and have they started working for you?
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Best of luck to you Vivian, really hope Ibrance is the magic you need!
Redroan and Chris, really sorry about your markers. Shoot, you both just started. Hormonal treatments, like this combo, take some time to work. I really hope the scan shows a different pic and you get some time to allow this combo to do its thing.
Good luck with the appeal JFL. Is anyone here taking Ibrance with Faslodex off trial? Anyone get their insurance to cover it? I didn't think it was FDA approved, therefor, insurance would deny. Hope I'm wrong.
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Thanks for the well wishes, I am trying to be positive and I do respect my onc for being cautious, We have not discussed what is next yet, He is waiting for the ct I know. And I guess I will just try to stay positive and think the best . Maybe it is just because the ibrance is working that markers went up.
Best of luck to you all, Stay Strong,
Redroan
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Quick update: I have completed two cycles of Ibrance+letrozole (having started after a PET-CT that amazingly showed NEAD following taxol for liver). Had a PET-CT today, and it remains NEAD. Tumor markers holding steady in normal range. Blood counts causing no delays so far. But I have a heck of a mouth sore that has lasted over a week.
You go, JFL!
Good wishes to all.
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Chris sorry that the herceptin and Perjeta didn't work for you. I was her2nu+ when I was first diagnosed. When my bone Mets were biopsied in 2011 it showed as negative but the ER/PR was still positive . My onc told me that Her2nu doesn't always show in bone mets and that he was sure I was still positive. The Perjeta and herceptin that I had subsequent to the biopsy did work but yet Kadcyla did not. So who knows. Just hoping that the Ibrance/Femara works for all four us. My onc keeps telling me to be patient that this combo could take a while to work.
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Hello everyone,
Popping in to add some data. After Round 2 of Ibrance I got another slight drop. Only about 10 points but I'll take it and be grateful. I really do believe that an Ibrance and Faslodex or Tamoxifen combo might be more effective for me, so I'm eagerly awaiting more results from those trials and hopefully FDA will approve soon.
My numbers are still in the tank and I can definitely feel more fatigue after this round compared to the first. but thank goodness still no fevers. We're pushing on and I'll start Round 3 next week.
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That's great, kaydeesmiles! Any drop in tumor markers is to be celebrated. Can I ask what your ANC is hovering around? Has it gone down from one cycle to the next, or held steady? Thanks.
I'm not-so-patiently waiting to start my second cycle on the lowered dose. I'd be very happy with any drop in tumor markers, even 10 pts.
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So sorry to hear about the markers going up and, JFL, about the initial insurance denial--hopefully the appeal with more info will be all it takes.
I found out last week that my tumor markers went up, too. But since it wasn't even a full cycle when they were drawn, my onc says it's too early to be concerned. I really wish I could get God to just hold up a sign or something to let me know what's going to happen, it's kind of stressful waiting and wondering how this is going to go.
Oh, and kaydeesmiles, great news about your markers dropping! Wishing us all more good news to come!
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Thank you Roses, I'm really hoping I can keep pushing the TM down.
sandilee, My ANC dropped to a dismal 0.6 after the first round and is hovering there. Hopefully round 3 won't push it any lower. And yes, yes any drop is a good drop!!! I know tumor markers are not always reliable in all people, but they've been a pretty good indicator for me.
Rooting for you and wishing you a successful second round.
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Romansma, I just started on Ibrance/Faslodex combo. Not in a study. I told Dr that is what I wanted and she somehow got it approved for me.
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Thanks, kaydeesmiles. Did your doctor have any problems letting you start your second round with 0.6? Any words of wisdom or tips for avoiding infection?
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sandilee, he didn't have any problem with letting me start the second or third rounds. But he did tell me to call him immediately if I even thought I was getting sick.
I am worried about the neutropenia though and I've cut air travel significantly. And when I do fly.... that quirky lady wearing the white gloves? Yeah, that would be me. I'm super careful about surfaces like door handles, atms and elevator buttons. I do avoid large festivals/crowds. Maybe I'm being overly cautious, but I do want to stay on this drug if it's possible it could work for me. I don't want to get sick and be snatched off of it.
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No, I don't think you're being too cautious. I'm the one who recommended the white gloves, and I use them, too.
So glad to hear that the drug seems to be working for you. We need some positive news! Stay well!
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Those of you with increased tumor markers, just wanted to say I am thinking about you. Part of what makes this dx so difficult is the unknown status. It is hard to mentally prepare or know what to do when one doesn't know exactly what is going on.
Also thinking of those of you with tanking or troubling counts. Hang in there.
I was looking at the ASCO agenda for next week's meeting (May 29 - June 2). There will be many trial reports on Ibrance - with Femara, Faslodex and Tamoxifen, including results from various subsets of people - premenopausal, over 65, etc. Not sure how far along the various trials are (other than the Faslodex one, PALOMA-3) but I hope the updates continue to show promise with this drug. I am going to wait to file my Ibrance appeal until after the details of PALOMA-3 are announced at ASCO on June 1. It should bolster support for my appeal since the April announcement about Faslodex/Ibrance success didn't include any details other than that the Phase 3 trial was stopped early because it met its primary endpoint on progression-free survival. Also, Pfizer is holding a conference call with analysts and the public on June 2 to discuss ASCO presentations and oncology breakthroughs. I plan to listen to that as well
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That's very interesting, JFL. Do you know if this conference call on June 2 be available online? How do you plan to listen to it? I like your plan. I think that having those trial results could make a big difference in getting your approval.
Thanks also for your encouragement to the rest of us. I'm getting very antsy about sitting here waiting for my counts to rise (and formulating a case to my doc about why I shouldn't have to wait). It's frustrating to see women successfully continuing the drug with lower counts than mine when my onc, as much as I respect him, is making me wait because he doesn't believe it's worth the risk in my case. I'm willing to take that risk so I can see if I'll have results.
We are all so different, at different stages of health, age and cancer progression, so I have to remember that what's good for one may not be good for all. But still, it's hard.
I'm really rooting for you, JFL, and thanks for the info and for keeping us posted on your situation.
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JDK, I was just about to send a post with the exact same questions that sandilee asked! How are you able to listen to the conference? Are you going to view write-ups or summaries, etc? My onc seems to thinks that the results discussed in the ASCO conference may help us in getting the Falsodex/Ibrance vs. Femara/Ibrance approved.
Sandilee, the article you posted was very good and really got me thinking, thinking, thinking, and researching more! I was on Medrol for another medical prob. I have and when on a corticosteriod my neutrophils went way up. Now I understand why and the connection between my "bad immune system" and cancer growth. There is so much to learn.
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Sandilee and Vivian, below is the info about the Pfizer conference call, as well as a link to Pfizer's website where the info is posted. You can listen by phone and can also follow the slides they present on their website. This is a securities law requirement for Pfizer as a publicly traded company to disclose material news to shareholders. This call will discuss all their cancer drugs, not just breast cancer or Ibrance. However, since Ibrance is one of the key money makers they are betting on for the near future, I suspect it will be one of the highlights of the call. There will also be time spent talking about the financial impact of the drugs in the pipeline on Pfizer's revenue and earnings (which is what the analysts who follow the stock want to know), which may not be of interest to everyone and could be overly technical. I plan to have the call playing in the background and will then tune in when Ibrance or other breast cancer drugs are discussed.
http://www.pfizer.com/news/press-release/press-rel...
Pfizer Invites Public to View and Listen to Webcast of June 2 Conference Call with Analysts to Review Oncology Business and ASCO Data Presentations
Tuesday, May 19, 2015 - 10:00amEDT
Pfizer Inc. invites investors and the general public to view and listen to a webcast of a conference call with investment analysts on Tuesday, June 2, 2015 at 4:30 p.m. EDT. The purpose of the call is to provide an update on Pfizer's oncology business and to review Pfizer's ASCO data presentations.
To view and listen to the webcast, visit our web site at www.pfizer.com and click on the "Pfizer Analyst and Investor Call to Review Oncology Business and ASCO Data Presentations" link in the For Investors section located on the lower right-hand corner of that page. Information on accessing and pre-registering for the webcast will be available at www.pfizer.com beginning today.
You can also listen to the conference call by dialing either (844) 246-7558 in the United States and Canada or (303) 835-4213 outside of the United States and Canada. The password is "ASCO".
Visitors to www.pfizer.com will be able to view and listen to an archived copy of the webcast of the conference call.
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Thanks JFL! I will be 'a listenin' !
Btw, I did not qualify for the Lilly/Falsodex study after all my angst, and the Case Manager Nurse did not know why because she "lost the email". Agggggh! It may just be job for her, but it is a life to me. I can find out from the doc, but still I want to know. After talking with you guys and doing alot of thinking I had decided the study was not for me, but that is not the point.
Anyway, the Ibrance is available for me to pickup Tues (a 2 hr drive away]. $80/month with my ins. and $98,600 is no insurance (thank G`d)!. Why so much?
Take care to all you wonderful women out there!
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Vivian, I'm glad you'll be able to start the Ibrance. Are you sure that's not 9,860.00? I think my information stated it was between 9 and 10 thousand a month. (I'm not paying that, fortunately.)
Vivian, don't forget to go to Pfizer's website and see if you can get their $10 per month co-pay card. It would save you $70 a month! And are you sure there is no way that the specialty pharmacy can mail your drug to your home?
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Uh, yeah! I added too many 0s. Make that $9800! I will check on the card. My ins does not allow for the specialty pharmacy mail in to my home. But, I can deal with that.
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Hi all, wow this thread has been busy! Thank you so much for the info on the conference, I will definetly be listening☎️☎️☎️.
This weekend has been wonderful. DIL and DS are here and we had my DILs baby shower. Happily beyond belief, I was there, well, and able to enjoy every fabulous moment. Had it at a country club so there was minimal muss and fuss by me. They did all the cooking, cleaning up and serving. I know it was a splurge, but worth every dime in terms of health.
Sandilee, I know how frustrating it is to wait to restart! I have done it also, but as my RN told me while I was bitterly complaining: what good is a dead patient taking Ibrance? In her callous way, she is correct, try to stay calm and take your supplements.
To all dealing with TMs: UGH! Mine have been up and down like the Ibrance roller coaster we are on. Hold on to your hats, hopefully it will be a long ride.
That's all for now....Enjoy your BBQs and swimming pools and whatever wonderful things life has to offer. Myra.
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Hi everyone, hope you all had a nice weekend.
I am checking in to see if anyone has had nausea at night (early morning) on the Ibrance/letrozole combo - I don't think it's connected to the Ibrance because it feels like reflux, just checking to make sure, since I've gotten sick 3 or 4 times on the combo?
I have had very bad reflux/heartburn ever since my first radiation several years ago and was on Prilosec but stopped it with the Ibrance (now taking Zantac at night, and tums). I got sick on 5-21 around 4 in the morning, and again early this morning (5-26) at 4 a.m. Don't want to gross people out, but on 5-21 I was sort of alarmed since it was bright red and looked like blood (however, I had watermelon the night before, and the Ibrance pill is red, so maybe those 2 things contributed to the redness, but it really was bright red (blood color), so it scared me since I never had that before). The nurse said she thinks it is unrelated to the cancer (maybe bleeding ulcer?) and to go to the emergency room if it happened again. This morning at 4 a.m. I got sick again, but no red, thank God, so no emergency room. I took the Ibrance later in the afternoon yesterday (usually take it around noon). I did have a cup of tea last night which I usually avoid, so maybe that aggravated things.
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Holly, so very sorry you're experiencing this! It must be difficult, too, to try to eat in such a way as to not get heartburn, and then to try to fit your meds in with all that. I can imagine how alarming your symptoms must be.
I haven't had any heartburn or other problems when I took the combo, or Letrozole alone, except the occasional headache. I hope this can pass soon for you. It's unfortunate that you can't take your usual for heartburn, as the Zantac doesn't seem to be working too well for you. Have you explored causes unrelated to cancer with another specialist? It's a nuisance because we are in the doc's office so much already, but it might give you some relief if they could find the cause, or at least prescribe something that works more consistently that is also suitable to use with the Ibrance.
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Thanks, Sandilee, I figured it was not the Ibrance but since nausea is listed as a possible SE, I thought I'd see if anyone else experienced it. I have not had the headaches except once or twice (probably unrelated for me, but yours does sound like a SE so I hope you are also getting relief). People react so differently, it is great to have this sharing of info (thank you again Romansma for starting this!)
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Holly I did have very slight nauseau when I took the Ibrance in the morning. So I started taking with dinner and have not really had any problems since. Also I have not had any acid reflux since on Ibrance/Femara. Strange but I did have on my prior treatment, but that seems to have stopped. When I first started on Ibrance I had some slight headaches, but haven't had since the second cycle.
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Holly, hope you are feeling a little better. Are you taking the Ibrance with a full meal?
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Holly. Sorry about the nausea. Have some mild nausea occasionally. As Hope said, I take it after dinner on a full meal. Myra
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Thanks everyone, for the feedback - the timing of the pills is something to think about. I have been having them with a sandwich at lunch since dinnertime is crazy in our house with everyone running to and from sports, not sure if having it at dinner would help since I'm trying to eat light later in the day because I get the reflux worst at night, and the worst of it has been at 4 in the morning (but only sometimes).
Maybe I'll try switching the pill taking to dinnertime next cycle and see what happens. Trying to be more conscious of diet - eating smaller portions, avoiding fried things, avoid tea (hard since I'm a tea addict), avoiding acidy foods like tomato and sauce, and am thinking of cutting down on soda water (I drink it all the time, am wondering if the carbonation is contributing to it). No fun cutting out foods, but on the bright side, maybe I'll lose a few pounds!
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Holly, I've been having what I would call irritation in my esophagus,on Ibrance where I never had reflux or much indigestion before (except during chemo, but that's not surprising). It comes and goes and doesn't seem to relate to the pill timing. I even had it the first few days of my off week. It's hand in hand with increased nose and tongue irritation and sort of a cough when I breathe deep so I think it's just an Ibrance cell turnover thing.
For me it's annoying, but I can imagine it would be much worse when you already have reflux issues. Hope you find a way around it soon. Hang in there
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Thanks Roses, that makes sense that it could be the Ibrance irritation making the reflux worse (I don't have the irritation on the tongue or nose, but I do have a slight cough which I guess could either be from the Ibrance or the lung mets) - Like your irritation, it does come and go, so I'm hoping I'll get a break from it tonight.
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Holly, my reflux/irritation in my esophagus is very much like what Roses described. Started to be really noticeable during my off week between rounds 2 and 3 and at the beginning of round 3. I did not have it before so I'm pretty sure it's either Ibrance or letrozole related? Annoying but so far manageable.
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Holly, I'd just make sure, whatever meal you take it with, that it is substantial. At least 400 calories. A small sandwich may not be enough to keep the nausea away. Nausea was a big issue in the trials until they changed the dosing to be taken with a meal. I chose dinner time because it's consistent at our house AND if I start feeling any nausea, hopefully, I'll sleep through it! I have felt nausea a handful of times and when it has happened, I ate a really small dinner, or I waited too long after dinner to take the Ibrance.
Hope everyone is feeling well. My energy levels are not improving. My pain levels flared on my week off Ibrance again and it continues now. Starting week 2. Confusing. I guess I'll know soon enough if anything is working. In the mean time, trying hard to stay a little active and eat right. I slept 10 hrs straight last night. Doesn't usually happen because I wake up in pain way before then. I think the infrared sauna yesterday helps to make the pain meds work better. I think it has something to do with improved circulation. I read somewhere that using the infrared sauna on chemo days can have that effect too. Still experimenting with it to see if it helps.
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Thanks for that input, Kaydeesmile and Romansma, I am keeping it all in mind and will have to experiment and see what works. Actually didn't have it last night, so that was a relief. A friend just told me bisphosphonate drugs can cause ulcers ( Zometa is a bisphosphonate drug and I have been on it for a year). So it could be many or all of these things combined.
Romansma, I hope the infrared sauna will give you some relief soon. Praying for everyone, and thank you so much for all your great advice!
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Hi Ladies,
I started Ibrance on February 15 and have had TERRIBLE reflux. I just started on omeprazole. I also found out that it hasn't been effective for me. My tumor marker went from 120--216 in a month, so I am switching to Halaven. Good luck to you all with Ibrance.
Liz
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Sorry to hear that, Liz. Had you failed Femara previously? Hope you have good luck with Halevine.
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Hello - new to the board. Diagnosed at age 25 in 2001 and mets to bones and lungs in November 2014. Just started Ibrance (added to Femara) last week. So far only side effect seems to be headache. Was so grateful to find this board! Love, prayers and positive vibes to you all!
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Liz so sorry that the Ibrance didn't work for you. I know firsthand how disappointing it is to fail on a drug that holds so much promise. I'm also concerned regarding the Femara. I have taken it in the past and was NED for five years. But of course I'm concerned now that since I've had Femara in the past, the combo won't work as well. But I will just have to be patient and see. Just curious, had you discussed with your onc the possibility of combining the Ibrance with Faslodex? My onc had indicated that would be a possibility
Good luck on Halaven. It worked for me for over a year. I felt great on Halaven, but I caution on to stay on top of the neuropathy. I made the mistake of not telling my onc until the neuropathy got so bad I could barely walk. That was six months into it. He then reduced the dose and gave it every two weeks. I am still annoyed with myself that I didn't mention that sooner.
Praying that you do well on Halaven.
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Zimmerwoman, welcome!
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Sorry it did not work out for you Liz. I pick up mine tomorrow (With the Pfizer card!). Good luck with Halavan. Is that a Her+ drug?
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Hi all,
Just a word of caution about making sure to stay hydrated on this drug. As I was finishing up the last few days of cycle 4, I got a little dehydrated working outside and had a tailspin. I literally felt like I hit a wall. I could only lie in bed ... I couldn't even focus on TV. Trial nurse agreed with me to skip the last two doses and I bounced back.
For the newbies, I have always taken it right after dinner with no problems, only some very slight nausea in the beginning that has disappeared. Blood work tomorrow and on to cycle 5!
Good luck to everybody!
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Well, shoot, I have to delay cycle three because of mouth sores. Onc says I have to wait until they are completely healed, then resume on a reduced dose. I was too cavalier and didn't pay attention to taking care of my mouth. Gosh, I love potato chips.
My recent scan and TMs were good.
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Hello and Welcome, Zimmerwoman.
3Holly, regarding your question about Ibrance and nausea, I had diarrhea and vomiting my first night on Ibrance and a tummy ache for a couple days after, but have been ok since then. It seemed like my body took a few days to adapt. I take it with breakfast and try to avoid anything questionable like high-fat restaurant food. You probably know about sleeping on a foam wedge for reflux.
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welcome Zimmerwoman. Good luck with Ibrance. Started cycle 4 tonite. Lenn, can't believe you said that about hydration. I had a very similar experience at the end of last cycle. They gave me the Xgeva shot when my counts were down. I got out of the car and reached for the door knob and my knees were about to buckle and I was shaking. Did not feel better til I drank enough water. Flushing out these meds is paramount!
Shetland Pony, sorry about the mouth sores, but good news on scans and markers.
Have a good nite all...Myra.
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Hi. I'm new to the board, but I feel like I know you all from reading all of your posts back from the beginning one from Romansma.
I was diagnosed stage 4 to bone in from the get go in 2011. Had an amazing run on Faslodex and exemestane. 3 1/2 years NED. Was hoping for longer but that was not to be.Just started Ibrance with Letrazole one week ago. I'm very tired. I dont like being tired. I've got things to do, ya know? Anyway, blue shield denied me so we are appealing. And apparently we don't qualify for any Pfizer rebates because we make too much money. Well ok, but $ 120-150,000 a year for one medication is a lot, even for us. So, fingers crossed on the appeal.
Anywho, here I am. Thanks for all of the great insight. Hopefully I will be able to add as we go.
Stefanie
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Welcome, newbies!
Stefajoy, you are the only other person I have heard of that was given Faslodex and Aromasin as first line therapy. I hope my run is as long as yours! Are all of the Pfizer programs income-based? Good luck with your appeal. I am going through that whole drama myself.
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Pfizer didn't even ask me income as I remember. Myra.
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Myra and Lenn, I will heed your warning about staying hydrated. Thank you!
Hello, Stefajoy!
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I did the standard cytoxin taxotere drip for 18 weeks, bilateral mast, radiation, then I was put on faslodex and exemestane. Is that still first line?
I will ask my husband about Pfizer. They asked him a bunch of questions and the last one was his income, followed by...oh, you don't qualify. But it is worth checking again. I suppose they aren't asking for tax returns so I guess we could lie.
Did I say I was tired? Ugh.
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Ok. I asked hubby. He said the co pay card is only valid if your insurance approved it and pays some. Then Pfizer drops the co pay down for you.
So far, we have a flat out denial.
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Do you know why insurance is denying? Doesn't make sense. Most of us are not on this combo as a first line treatment and most of us have been approved with insurance. I'd ask more questions of your Drs office. I'm thinking they haven't given the correct information to get you approved. Good luck, I have confidence it will work out for you.
Hydration, yes, water and lots of it is key to helping your body keep manufacturing the blood cells it needs. Drink more than usual. Headaches, low energy, and to a certain point, low counts can be eased with more hydration. I work hard at it daily. Sometimes we get busy though and just one day of not drinking enough can cause you to feel awful.
I felt better today after sleeping for 10 hours straight. I think I'm not sleeping as well because pain is keeping me awake or waking me early. Need to get a handle on it.
😴
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Stefajoy, I second Romansma about checking to see why the insurance was denied. The approval process should start with your onc's office, they should submit the forms to the specialty pharmacy approved by your insurance. They would be told by the pharmacy why it wasn't approved. In my case, the form asked my diagnosis, and because I was Stage I at original diagnosis, that's what was the office wrote as that's what they consider "official diagnosis", and then my onc followed up with details about mets in an attached sheet. They just saw "Stage 1" and it came back "Not appropriate." As soon as it was explained that I had mets, it went through quickly.
Good luck.
Thanks for reminding me to drink a lot, Romansma. Tomorrow I will get my blood checked to see if I can re-start the Ibrance. Wish me luck, as it's been three weeks and two "failed" blood tests since my last Ibrance pill. I have felt well the whole time, but my neutrophils haven't cooperated.
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I started ibrance in March . I have to receive neupogen injections for my WBCs .
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The reason for the denial they said was that it wasn't a first line treatment, and that's what the FDA approved, which doesn't make a lot of sense since most of you are not first line either. I'll keep you posted on the appeal.
I'm a camel. My body doesn't tell me I'm thirsty. And I dislike drinking water, for the most part. I need constant reminders to drink, and I do believe it is the culprit of many of my health problems
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yes I'm on ibrance and femara. Starting my 4th bottle
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Stefajoy,
Try alkaline water. It never quenches my thirst. as a matter of fact it makes me thristy! and it is supposed to help your immune system.
p.s. I am starting this treatment the same time as you!
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Liz, sorry you didn't have luck with the Ibrance, I hope the next drug works for you. Hopefully the prilosec will help with the reflex - it did work well for me - it releases for 24 hours so it's always working.
Good luck tomorrow, Sandilee - I hope the counts are up for you so you can get going again.
August15, how often do you get the neupogen?
I agree with everyone that hydrating on all these meds is critical, especially in this humid weather. Had a similar experience doing yard work last year on a really hot day, got really sick and wiped out from dehydration. I also found that hydration can help with nueropathy, and it makes the blood draw easier, so there are many reasons to hydrate. I drink soda water because I find it hard to drink a lot of plain water - however, not sure if carbonation is an issue with the reflex, will ask the doc.
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Ibrance is expensive so insurance companies will find whatever reason they can to deny it. Funny, it you think about it, many of the medicines we take are "off label" and not prescribed for the FDA approved use, although they are never denied -- for example, people taking effexor, lexapro and the like for hot flashes; occasionally, ativan is prescribed for chemo nausea. Doctors are free to prescribe off label in their professional discretion. It is only denied when the drug is expensive.
Vivian, where do you find alkaline water and what exactly makes it alkaline? I have never heard of it but would imagine it one's boosts immune system and has other health benefits like you said, since the whole acid/alkaline imbalance seems to play into a lot of "western medicine" health problems.
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Sandilee, good luck today!!!! Myra
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Sandilee good luck today with your blood draw.
Definitely agree about the water and hydration. I was told not to drink carbonated water as the PH is too low. I prefer to drink the water at close to room temperature and find I can usually drink more than if it is cold. Also take a supplement ChlorOxygen which helps build red blood cells. You have to drink a full glass of water with that. So I'm being forced to drink more and I do feel better when I do.
Holly I get Nuepogen from time to time. I've discussed with onc and also called Pfizer regarding Nuepogen. After getting the run around at Pfizer I was finally able to speak with someone and they advised that there is nothing in the data saying that you can't take with Ibrance/Femara. I think some oncs are being overly cautious. That being said, I am able to keep my counts up most times with various supplements and my whites have not been critically low. When I do get the Neupogen it's always between cycles and haven't taken after every cycle. Last time it was two injections starting two days after my last cycle.
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Good to know about the Neupogen, pearlady. Thank you. I may ask about it. I imagine his problem with it is that the effect is only temporary, and when on a three week regimen, my counts would no doubt drop again within a few days without another dose. My white counts were ok with the exception of the neutrophils. Hopefully they have come back sufficiently on their own by today.
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Stefajoy, that's interesting (and frustrating) about why they denied it. Most of us here are not first line treatment and I, for one, didn't have a problem getting approved. Good luck on the appeal.
Sandilee, hoping your counts are back up so you can start another round!
I think it's interesting how some Oncs are using Neupegen and others are saying it's not indicated. I hang at .6-.9 ANC even after a week off and no Neupegen. I wish I knew why. Guess I'm just curious why you'd use it with a chemo that got you that low and not Ibrance.
I'll be taking an extended break after this cycle to go on vacation. We will be taking a cruise to Alaska and I don't want to be ultra compromised on a cruise ship. I finish about 10 days before we leave and we will be gone 8 days, so I'm planning about a 3 week break. Of course if tumor markers are still rising with my next blood draw, I may be on a permanent break from Ibrance. Hope not. Anyway, I'm interested to see how well my counts recover during that time. They haven't budged much at all during the 7 day breaks between cycles.
Go drink some water everyone!
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Sandilee I usually get my counts checked right after and then half way through the cycle. I think my onc was concerned starting when the counts were so low. I think that the supplements do help during the three week cycle, since the counts haven't been low until the last few days.
Romansma hope that you have a wonderful cruise, that your counts recover and that your tumor markers fall, or at least stay stable. Not necessarily in that order, however.
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Romansma, I've been on that cruise with my family. Out of Vancouver? The Inside passage. It's AMAZING and beautiful. You will love it. Have fun!
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Yea! My neutrophils have returned! I'll be starting the 100mgs as soon as CVS can get it to me. All of my counts were up and nuetrophils were in a healthy place.
Romansma- I think that my onc isn't keen on using an artificial neutrophil booster with this med in my case because something like Neupogen only lasts four or five days, and then they would go right back down. He would prefer to find a dose and a schedule that works for me long term by monitoring my counts and adjusting the dose with the hope of finding a schedule that will work without having to boost my ANC with another drug or worry about infection.
I do have to go in in two weeks for a CBC, just to see how things are going on the 100mgs. They want to see how my body reacts over time- more information. If the 100 keeps me in range, that would be great.
This drug is still "experimental" as far as the doctors are concerned and may need a little bit of juggling to find what works best for each patient. I figure if my doc is willing to go to the trouble to work this out, I'm good with that. Even if I have to wait an extra week to restart each time, if it's working and it keeps me stable (a big, unknown at this point) then great.
The fact that I can stay on the Letrozole without any side effects ( a few weird dreams, occasional headache) throughout is a help. I've never taken this drug, and it's one he might have prescribed at this time if Ibrance never existed. So in a way, whatever boost Ibrance gives is icing. That may also influence what is and is not worth the risk in my case.
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Sandilee, I feel the same way about having to delay then reduce the dose (because of mouth sores). As long as I'm still taking letrozole, I am doing something. It feels weird to have these unused 125 mg pills that cost $319 apiece.
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Doesn't it though? I half expected the pharmacy to ask for them back. They couldn't resell them, of course, so why.
My NP suggested keeping them on hand. It's possible at some future date they might up the dose.
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Hooray Sandilee! I am on 100mg and so far seem to be doing ok. Myra.
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That's great to hear, Myra. Have you had more than one cycle with the reduced dose? And your ANC was ok to restart?
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yes, second one and everything recovered within 7 days! Myra
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That's very encouraging, Myra, thanks.
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Hi friends,
Just wanted to check in. I had my onc appt on Tuesday after my first round of Ibrance/Femara. I did end up getting a Neulasta shot because my WBCs were low. It was either that or lower my dosage but they meds were already mailed to me so we went with the shot. Just a side note, I've been so loopy that last night I accidentally threw the $12,000 pills in the trash without realizing it. Thank God I had a gut feeling when I couldn't find them to check the trash! What a looney tunes!
Anyway, my oncologist has about 11 other ladies on the same protocol. One of them had been experiening increasing TMs so they decided to get a PET/CT scan. Guess what? Totally clear scan! Soo...he's telling me to not put too much emphais on the markers..mine did go up a bit after being on the meds for 2 weeks. I'll probably find out tomorrow the results from Tuesday but if they have increased I'm going to try not to worry about it. I'm sick of worrying!
Love ya ladies!, Christine
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Shetland_Pony,
On mouth sores, I have several from my abbreviated first cycle along with a mild case of thrush due to the suppression of my immune system. My onc ordered a "cocktail" madeup by the pharmacy and I have been able to eat after a week of misery. My platelet count is very low and am waiting to restart with a lower dose. Over the counter products did not work for me and I wish I had this "cocktail" when the sores began.
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Christine, Amen! I hear ya. I am sick of worrying too! My DH and I planned a getaway to NYC because I am so sick of worrying! Thanks for the encouraging words about TMs.
Max Otto, read back to page around 17, there are some supplement recommendations for platelets and blood counts. They have worked wonders for me and others on this site.
Have a great day all, and try to make it worry free.......😝to cancer.....Myra.
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Sandilee, great news on the blood counts, glad you are onto your next round.
Pearlady, thanks for the info on neupogen and carbonated water. You continue to amaze me with all your supplements, etc.. since I have all I can do to keep track of the Ibrance/letrozole and Zantac, never mind the vitamin D and fish oil which I often forget to take.
Interesting info on TM's - My doctor says they don't mean much till there's a pattern, so it's "wait and see."
Romansma and Myra, have fun on your vacations!
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Sandilee great news about your counts! So glad you can push forward.
Have fun on your trips ladies. I might have to plan one too. I think we all could use a worry-break😃
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Great to hear that the increasing TMs were not an issue. I am hoping that happens with me too! Just wish I had decreasing pain, then I'd be a little more hopeful. Oh well, time will tell! Thanks for relaying that, Christine.
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Sandilee, hooray on starting up the Ibrance again!
And Christine, interesting about the TMs and good to know--does anyone know why that's the case Mine were up but it's still early days for me.
I'm having a lot of sort of icy-hot pain in my hip bones which is one of the places i have a lot of mets--no idea if it could be healing, flares, worsening cancer, but I guess time (and eventual scans) will tell. Anyone else have anything like that happen? It comes and goes, doesn't correspond with movement or pressure...very odd
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I started Ibrance yesterday after a month off due to neutropenia. My values rallied to normal and now I will have 100 mg from now on...I am so happy with it. I did not have to answer questions since GEHA picked up the cost. There are lots of questions from the people at the Specialty Pharmacy that overnight delivers the packet of Ibrance. Carolyn
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After 5 years of Faslodex, I will be joining this group. Took my first letrozole tonight, and just have to wait for the Ibrance to be approved and delivered. I was expecting to hear from my Oncologist's PA today, but nothing. Having read all 26 pages of this thread, I am feeling mildly prepared. Have some concerns of course, but since I expected to start Xeloda, this protocol feels like a reprieve.
*susan*
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Rosestoeses, so funny you mentioned that hip pain! I just told my DH the exact same thing. I love this thread.
Susan, welcome. I totally remember you from the short 4 months I was on fasolodex. Glad you are joining us, this is a group of very knowledgeable, caring women. Good luck with the Ibrance.
Myra.
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Myra, sorry you have it too, but glad I'm not alone! I think with a drug this new, there isn't really the institutional knowledge, glad we all have each other to share.
Susan, sorry you're moving on to Ibrance, your long, long Faslodex run was really inspiring to me. There are a lot of us "fanny pack refugees" here, though--hoping this is a winner for us!
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All you gals starting up or again on Ibrance: I've taken 9 doses as of today. Not really any SE yet, but I'm way early on this drug. I pray for positive results for all of us and mild SE!!!
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Welcome, Susan! This new drug requires a lot of "supervision" by our docs that we Fanny Pack sisters aren't used to, but if it works in the long run, of course it's worth it. Like you, I'm glad to have a reprieve from either A/A or chemo. I'm especially glad we have each other to compare notes and give encouragement during this little experiment. We can do this!
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Welcome Susan! Speaking from experience, Ibrance is easier on me than Afinitor or Xeloda, so that is a positive. Jury still out on effectiveness for me, but should know soon.
Roses, pain flares have definitely been an issue for me. They start on my 7 days off and continue through the first week or so of the new cycle. The pain is concentrated in my lower back and hips. I have a large tumor load in those areas, But I am still confused by the pain and the timing of it all because it seems intermittent. I wondered if it could be due to my blood counts working extra hard to recover. I've had consistent low counts and the major pain seems to start when I finish the cycle. I remember being surprised by the lower back pain when I took Neulasta. I ant remember how low my counts were then, but my wbc has been hanging around 1.2-1.3 and ANC around .6. Guessing my body is trying hard to recover during that week. I was told the Neulasta pain would be concentrated in large bones. This may have nothing to do with it, very confusing.
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Sandilee, Yes. It appears that my month will now include three visits to the hospital. My oncologist, Dr. Christina, wants me to get a CBC on day 15, full panel on Day 21, and then she sees me between day 26-28. Since my veins were brutalized getting the MRI contrast in this week, she has ordered a finger stick for the CBC, while the full panel will access the vein. I expect that I will have the PA on speed dial as we manage the first two cycles. Her job is to help me manage the side effects. She is new so I don't have a good relationship with her yet. This will test her since I like clear answers. :-)
*susan*
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Hope, mine started on the week off also. I had an Xgeva shot at that time and I get it on that side of my stomach. I thought it may be that, but now I am not sure. I do know I will not be getting that shot when my counts are low since I almost passed out a day later. Myra.
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Approaching my ten-year anniversary of a Stage IV with bone mets diagnosis. Just took my first dose of IBRANCE with Femara. The dosage pattern of 21 days on and 7 days off is familiar and bittersweet. I'm expecting fatigue and drops in my white count, but wondering about hair loss. I'd love to hear from anyone with first-hand experience with IBRANCE. Thanks very much!!
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Well, I am leaving the Ibrance crowd, I sure am not happy about this . I had a ct yesterday, ONC called later in the day Tumors in liver have grown along with elevated tumor markers . So I wish you all well and hope you get the results we all want.
ONC has said next drug for me is taxotere . I had never heard of it, but he said is along the lines of ibraxane that I had the longest and best results with .
Take care Redroan
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I took my first dose of Ibrance/ Femara yesterday eve! So I
am now officially a "newbie" too!I was really really tired all day and I had to take 3 shortish naps to make it through the day. I hope that is not directly related to the Ibrance and if it ISrelated, I hope the fatigue gets better. No nausea, though! And I did drink lots of water as advised.
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Welcome, Vivian! Glad approval went well and you're on your way.
Redroan, oh, no! What a disappointment. Any time we have progression, it just sucks. It sounds like you be getting something that is likely to really work for you, though. Best of luck, and let us know how it's going.
Take care and hugs to you.
susan- Your onc's office sounds a lot like mine in the way they are watching things so closely. It seems like a lot, doesn't it? I hope that when things settle down we won't need to go in so often. And of course, I hope we're on this long enough that it matters.
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Myra, I didn't have the xgeva this last time, so I don't think the pain flare is anything to do with xgeva for me.
Welcome, Auelx. I don't think anyone here has experienced hair loss on this combo.
Susan, your schedule seems typical for the first 2 cycles. If all goes well, they usually stop checking mid cycle.
Hang in, Vivian. Fatigue is a mainstay of mine. Really not sure it has a lot to do with the drug combo for me. My counts are low, but it could be the pain meds, or even the cancer itself dragging me down. So hard to figure all the different symptoms and what is driving them.
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AuELX and Vivian, glad to have you "official"--welcome and hope it works wonders for you both!
But, Redroan, I'm so sorry it didn't work for you. I think it's especially hard when it's billed as a "wonder drug." I so identify with what Romansma said on another thread about being outside the park gates and not getting in. (((hugs))) to you and hope taxotare does some great work for you.
And, Romansma and Myra, I had my last Xgeva 3 weeks ago so I don't think that's it for me, either. But the timing of it for me is similar to yours Romansma. It was there in week 4 of cycle 1, worse in the off week, and more often now in week 1 of cycle 2. But it's different from the pain I had when I was dxed with the bone mets, closer to the really quick "zinger" pains I used to get on Faslodex that were followed by stable scans--that's why I'm hopeful, but also anxious to see.
Have a great weekend, everyone!
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Auelx, welcome and 10 years is very encouraging. I am just approaching my 1year with mets. Good luck to you and Vivian with Ibrance, I wish you the best.
Redroan, sorry about the progression, we all have to be realistic about these drugs. The media hype is just that media hype. Hopefully the next drug will work best for you.
My onc was making me crazy also with blood work, but now on cycle 3 he is doing it just once at the end now that he knows MY cycle. This month I have gone 21 days off, end of the cycle and then bloodwork. My poor vein thanked him.
That's all for now, Myra.
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Roses, I have not had hip pain on Ibrance - have not had any hip pain since I had radiation to the pelvic area a year ago (hip pain was was bad then, though, couldn't walk normally, so the radiation was very effective), and the hip pain has not come back so far on the Ibrance although sometimes I feel a dull pain in my lower back. However, I have had pain higher up the back and in my ribs that sometimes moves to different places - could be progression from bone or lung mets, but my visit last month showed TM's had gone down for the 1st time in a long while since switching to the Ibrance (may not mean anything till there's a pattern, we'll see what the scans show next time).
I did hear a "crack" the other night in my back, though, along with a sharp pain (was just moving around trying to figure out how to get comfortable sleeping since both sides are hard to sleep on now). I remember a while back I cracked a rib just pulling up a big plant, must be the weakened bones in my case, not the Ibrance, so I can't do anything too strenuous, and I have to rest my back at the end of the day so I can't get done what I once did.
Redroan, I hope you have better luck with the next drug, sounds hopeful since it's similar to the abraxane you had luck with.
Vivian, the low blood counts do make you tired, but also the stress of switching to a new med is exhausting, so hopefully this will improve as you adjust. Good luck to you and to everyone starting out!
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Thanks for the well wishes , I wish you all the best. I will probably still drop by to see how you all are doing.
Redroan
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Best wishes to you, Redroan!
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Hi Ladies, so here I am in Napa at a 3 day music festival. Let me preface this by saying that I am only three weeks out from reconstructive surgery, and I started Ibrance a week and a half ago. My WBC was 2800 (low, but not too low?). My first day here I picked up my small suitcase and pulled something in my lower back on the side. Been in pain ever since. So I manage an act or two at the festival, then I need to go back and lie down. I only made two acts today. Mostly i am in bed. Although a nice bed it is. Also, no dogs or kids. I'm hoping to make it 6 hours at the festival tomorrow. It's a lofty goal. It makes me sad to see all of the happy people singing and dancing, only because it hurts me to move, plus I'm too tired, and.... Oh yeah, I have CANCER. I do believe that once I am completely healed from the surgery, and my body get used to the new meds, and I can start exercising and strengthening a little, I won't feel so decrepit. In the meantime, it feels like I'm never going to feel better, and I'm feeling a bit sorry for myself. Kind of depressing
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Stefajoy, as I pretty much can tell from your photo, you are a young woman with a young family who wants to enjoy life like any other young person with a young family. I understand completely and wish I had a magic wand and could make this dx go away. Cut yourself some slack. 3weeks out from surgery? Give yourself some time to heal emotionally and physically. Do you have someone to talk to who is unbiased? We all need the love and understanding that people with this disease don't get. Try to take it slow and easy and give yourself the love and understanding you need in the timeframe you want. Virtual hugs. Myra.
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Myra, thank you for calling me young. I feel better already. lol.
I'll be 51 next month. Dx'd at 47. In three years I feel like I've aged ten. Got thrown into an early menopause, lost my libido, and lots of aches and pains. I was super fit and healthy before. What a difference a few years make.
My kids are 14 and 17. Almost there.
I know I'm being impatient. I haven't really had anyone to talk to, although I have an appoitment next weekend with a most wonderful therapist who understands BC firsthand(two times survivor, so far). I know she'll help me feel better. In the meantime, reading the posts in this group and the other mets topics has made me feel validated and less alone. My doc always said stay away from forums, they are full of misinformation and a lot of negativity. I think he does not know this forum. This forum is full of real woman, with real experiences, both positive and negative, but always realistic . I find this forum full of love and support. I'm glad I'm here.
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Roses, those "zinger pains" on faslodex....omg. They really freaked me out. I was convinced they were from the injections but my onc seemed to think it could have been inflammation from bone mets pressing down on a nerve. Sorry you felt them too but it's so comforting to hear someone describe the experience so accurately.
Now I too get a pain that started late in round two of the Ibranc. It's a poor man's hip zinger, different from the omnipresent dull ache, but still a little disconcerting.
Welcome AuELX and Vivian. Wishing you the best on this new med.
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Stefajoy, I was dx'd at 43, now just turned 60. My "kids" are 32 & 27 now. I know the thrown into menopause routine, because I was also. My poor DH, libido what is that? I understand your onc's concern about forums because I had stayed away from them for years. There are a lot of them with very negative women. Not here, tons of caring and love. Lots of good info, lots of help with SEs. I too was in great shape prior to this dx. I even taught spinning 2x per week. The media are the ones who put out misinformation. Eat right, exercise, stand on your head and spit wooden nickels ( did I just date myself?). It makes it sound like we are causing our own BC if we do not live the perfect life. OMG, help us if we have a cookie or glass of wine.....ok rant over!
Kaydeesmile and Rosestoeses, what do you mean zinger pain? My hip pain comes and goes right at my waistline.
Enjoy Sunday, mine is errands while I have DH around.....Myra.
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Stefajoy, I hope you can enjoy yourself today. I grew up just outside Napa and still love visiting there. I have a friend at the festival you are at. I've known her for 30 years. She has stage IV BC too. I am seeing her postings on FB. BottleRock, right? She is 49.....still young with a 11 yr old. Just like you (and me)! Go act your age! Enjoy!
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Thank you Pearlady and Romansma,
I took Femara previously for only 4 months before it failed, so I guess I shouldn't be too surprised that I failed Ibrance after 3 months. Freaking out. Thanks for continued prayers and hoping Halaven works for me.
Liz
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Good luck with your next treatment, eshinall!
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Hi All,
I just started cycle 5 and they decided to lower my dose to 100 mg. My counts have been pretty good and my white count has been actually going back up. My Neutrophils are low but that hasn't changed the entire time I have been on this trial so I was surprised when they told me they were lowering it. They are seeing that lowering the dose really helps with the fatigue you get the last few days.Since they are still "fooling" with the dose and trying to figure out what is right.. I have no problem having it lowered. Each month is getting easier to tolerate so hopefully this will alleviate the end of the cycle tiredness.
Welcome to all the new Ibrance users.
Romansma, your cruise sounds great! Have fun.
Drinking my water.....
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Lenn13k, That is very interesting since I am down to my last 3 pills and was exhausted today. Are they lowering the dose for all patients? - I see you are in MA - Are you at Dana Farber (I am, so I wonder if mine will be lowered as well)? I am guessing my neutrophils are down again, will see what they say about the dosage.
Stephajoy, I agree with Myra, it takes time to heal from the surgery, and I think you'll feel better when you do, and you will have more energy. It is also very stressful and tiring switching to a new med, I think things are better once you adjust.
Kaydeesmile and RosesToses, before I had radiation to the pelvis a year ago, my cancer was pinching a nerve and causing sharp pains as well as difficulty walking. So it could be a nerve, those nerve pains are usually sharp. The radiation was an amazing help since I have been free of the hip pain and able to walk fine for a whole year now - (even though I now have a higher up back and rib pain, it doesn't affect my walking).
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Liz, good luck to you. Hope the Havalen works.
Myra, the zingers are VERY sharp, quick, stop me in my tracks pains in my upper thighs. They had gotten pretty frequent for me before the Ibrance. They've been replaced with a different kind of less intense, periodic stabbing pain in the same area. Then there's also the dull ache right around the waistline that never goes completely away but is manageable for me.
Holly, I've discussed the possibility of "spot welding" on a few places in my back with my MO and RO. If the Ibrance fails to get rid of the stabs it'ssomething I'll push for. I think we're in wait and see mode.
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Kaydee, what is spot welding? Hope you get some relief soon.
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Kaydee's description fits the "zingers" I had on Faslodex and what I have now on Ibrance to a "T"!
And on Faslodex I had them in some of my other met spots occasionally, too (skull, ribs, etc.), but so far not in those places on Ibrance. With the Faslodex, it was followed by stable scans and some sclerotic changes, so after that it didn't seem as scary as at first (I was sure it was the cancer spreading before scans showed differently). That's the hope I'm holding on to with Ibrance, as well, but time will tell.
I had rads to my pelvis/femur about a year ago, too--it was amazing how much that helped the pain and so fast! These current pains are different, though, and on both the radiated and non radiated sides. So weird!
Lenn, that's interesting about the lower dose. I'm only in cycle 2, but so far I'm feeling pretty good. I wonder, too, if this is a protocol change or something particular to your situation? Hope it does the trick wiht your fatigue
Liz, praying for you on Halaven, hope if knocks that cancer out of commission!
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Hi! Check out this news release from Friday (5/30/2015) from the ASCO conference:
http://www.pfizer.com/news/press-release/press-rel...
They are talking about Falsodex taken with Ibrance doubling progression-free survival. We need to investigate further. Like, what are the numbers - the actual statistics? and, Will this news expedite the switch from femara to faldodex for those of us that want/need to? Lots of questions. I remember my doc saying that the conference may facilitate changes... Guess she was right!
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JFL,
Just now saw your question asking where I find alkaline water. I get mine at the local health food store around the corner, called "Earth Orgins". They also sell it at Trader Joe's and Whole Foods. The brand I get is called Le Vai. Their tel # is right on the bottle, 407-944-1443. There are other names and brands but my mind is drawing a blank right no (one of it's favorite things to do these days!)
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wow Vivian thx for the great info on ibrance and fasolodex. Will discuss w/MO at next appt. Myra.
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I'd be interested to see if anyone can get insurance to cover Ibrance with Faslodex since it isn't FDA approved in that combo yet.
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Vivian thank you for posting that regarding the Faslodex. My onc had told me early on that if the Ibrance/Femara didn't work he would switch to Ibrance/Faslodex, rather than switch from Ibrance. Hoping that my insurance would approve. I think the good thing for me is that it was tested on Her2+ also, which I am. So far my markers are stable, but I was on Femara for almost 5 years and fear that although it worked previously, it may not work as well now since I've had it before.
Susan welcome. Other than the annoying monitoring of the blood counts, the drug has been fairly easy for me. I don't really have any side effects. I do get a little tired sometimes, but I think that has to do more with my not sleeping so well than the Ibrance. But all in all, I'm able to work full time and carry on my normal life. I have no pain with the Ibrance.
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Vivian, thanks so much for the faslodex/conf. info. I'll be watching closely!
Holly, "spot welding" is when your RO targets a few extremely small areas on your bones to give you pain relief. I'm not sure about the other ladies, but when I had the round of radiation on my breast after the initial diagnosis the field was pretty wide and included the lymph node area under my arm. This time the RO would hone in on a few spots to help with pain in my back/legs. It's amazing how small the field can be.
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Below is a link to the presentation discussed at ASCO this morning and simultaneously published in the New England Journal of Medicine (NEJM). It is the first article on the NEJM home page. Median progression-free survival was 5.4 month longer with Ibrance/Faslodex (9.2 months on Ibrance/Faslodex versus 3.8 months on Faslodex alone). This was a pretreated group so the overall numbers are different than the first line numbers from the Femara study.
Vivian, thanks for the info about the alkaline water!
Hope, Northtexas was able to get Ibrance with Faslodex covered by insurance. I am not aware of anyone else (yet). I am still trying and plan to succeed! I have updated my appeal letter with the stats in the article above.
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JFL,
I was just thinking about about you submitting your appeal! I think the Faslodex/Ibrance combo will take time for insurance companies to allow coverage - at least mine anyway. But, they do need to get your diagnosis and other information straight. That's for sure! If their codes and numbers don't match right they won't go any further. Keep us posted.
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3Holly's - I am at a trial at Dana Farber but , right now I am doing it through MGH. I don't have to be monitored as much anymore , so I moved it closer to home after the first four months of going into DF. It was my MO there that looked into lowering the dose and found that it was being done for fatigue issues. I am supposed to stay on this drug for two years so they want to make sure you can/will stay on it. I only have issues with fatigue the last few days so hoping this moves solves that problem.
Where in MA are you from? I live on the North Shore.
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Lenn, my brother lives in Manchester by the Sea. Myra
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Myra, I am right next door in Essex...
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Lenn13k, That's nice that you have MGH on the north shore since the drive into Dana Farber is not easy, especially with all the extra visits of a trial. I am on the south shore, but my husband grew up on the North Shore and the MGH satellite there has been great for his family. Thanks for that info on the Ibrance, good to know they can lower it if needed, and I hope you continue to do well with it.
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This is the third morning in a row with nausea. Didn't have it before. Something has changed. Ugh.
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Hope, we are on the same path. Sunday severe, yesterday milder, today somewhat better. Waist pain waking me at night when I turn over. Ugh is right. Myr
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Crum, I don't like the sound of that, Romansma and Myra. Have you guys been eating normally? Myra, it sounds like yours is actually getting better. Might not even be related to the Ibrance.
Get better soon! Romansma- when is your next scheduled doc's visit? Does the nausea go away or does it linger all day?
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Sandilee, mine does seem to be better, but it is first thing in the morning. Sunday, it lasted all day in waves. I did not eat normally Saturday evening, went out with friends and they eat crap and sweets. Could be related, but the waist and hip pain has been there for the last week since I was on my off week. Hopefully it will go away as I go back to taking the Ibrance for the last few days. Oddly, 2 weeks ago I said to my DH, wow, I have forgotten to take my pain pills and then zap here is this weird pain. Myra
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Myra, your pain pattern seems in line with what I've experienced the last two cycles. It starts on week off and continues into the first week of the new cycle. Increased pain in hips, lower back, even down my legs.
The nausea, though. I ate pizza Saturday, which I hardly ever do because I don't eat dairy, typically. But, it's Tuesday! The nausea seems to taper as the day progresses, but it does come in waves here and there.
I have a dr appt next Wed with labs. Need to find my Ativan, always helps with Nausea. Shoot, I was feeling a little more energetic for a couple days and now this.
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OK this is funny, I had pizza too Saturday nite
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Hang on, you guys. I hope this is just a temporary bump in the road.
That is funny, Myra. Maybe pizza is contraindicated.
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Ok, that's funny! Cept, I can't find my Ativan! I'm chewing gum to help. Ate some dry toast. Still nauseated! I hate feeling nauseated. I deal with other SEs so much better.
K, everyone, no pizza and Ibrance!
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So funny about the pizza ladies. I am thankful this doesn't happen to me since I love thin crust pizza. Great pizza in NYC. Real ginger ale helps with nausea as does ginger tea or crystalized ginger.
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Sorry to hear about the nausea, ladies, I wonder if the tomato sauce (acid) on the pizza had anything to do with it (my nausea was also in the morning, about 4 a.m., but was definitely connected to the indigestion/acid reflux which may have gotten worse from the meds).
I agree that nausea is "the pitts" - will never forget having 9 mos of it during my 1st pregnancy (actually lost weight) - it was continuous, then, but on the Ibrance luckily the nausea is not continuous (not sure if just random or diet related - I'm trying to figure out what to avoid, trial and error, but maybe it's not even the diet at all, could just be the meds).
Hope you feel better soon!
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I will tolerate SEs, but I draw the line at pizza!!! Myra
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Do you drink coffee? One thing I've been doing is having toast or bread in the morning before my coffee (should give up the coffee but can't), and the acid seems much better lately, so maybe that's working. I have not given up pizza - still have it on fridays, but not a lot of it. I don't think it's the just the pizza, could be a combo of things with the pizza (did you have Coke or root beer or tea or anything citrus with it? I have to avoid those things). Nausea is listed as a side effect of the Ibrance, so maybe it's unrelated to what you are eating, but In my case I think there may be a link with the stomach acid being there when there's an empty stomach, in the morning.
I'm eating lighter at dinner, and having the bread before my coffee - don't want to jinx myself, but haven't had the morning nausea in almost a week (before that, I had it on 5-21 and 5-25, both times around 4 or 4:30 in the morning). Your nauseau may be unrelated to acid, but it's interesting that it is occurring in the morning also, so could be, with stomach acid in an empty stomach. I am going to ask about it at my next appointment, will let you know if I learn anything new. I know addivan helps with nausea, but it knocks me out (I used to take just 1/2 the pill for a very short time, just after my chemos - not taking it at all now since the nausea is not continuous, just sporadic).
I Hope your nausea disappears soon - Hope, did the toast help at all?
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Hello ladies, just checking in. I had my mid cycle blood work of my first round and numbers were within normal limits except WBC which was 2.6, but not too bad. I was wondering from those who have been on this a few months if these numbers tend to fluctuate a lot from cycle to cycle or if they tend to hover around the same, especially when they are at the low end. My Onc wants me to have another blood test the end of this week (3 week mark) to see if they have dropped any more to see how I'm doing.
Hope and Myra - feel better. Nausea sucks. It could just be a simple virus that may just take longer to kick because of our compromised immune systems.
For those moving on to other treatments, good look and I hope the next one is THE one.
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JJski62, The counts tend to get low toward the end of the cycle, and some have to take a break to wait for the counts to come up, but I've heard that whatever happens in the 1st few months (whichever counts are affected) is usually the way it will generally go for the duration (for each person the pattern may be different though). Good Luck!
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Hello ladies. I am based in uk where I branch is not yet available . I understand it is likely to be so next year. I have just come off letrozole as it stopped working after 10 months. I am now on weekly taxol. I was wondering if you can still have access to ibrance and letrozole after having chemo and letrozole on its own failing or if it is just a first line treatment which would rule me out . Thank you x
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Torridon, I think you could get Ibrance if your doctor recommends it for you - many of us failed the letrozole alone and have also had the chemo previously. I hope it becomes available for you soon.
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First Time for a quick question-- Myra, you said you taught spinning 2x week. What is spinning? Is it like making your own yarn or something?
About pain and other SEs: Okay, when I was on my study that just recently got stopped (Veliparib with the oral chemo, Temodar) my tumor spots would ache and burn terribly while I was taking the capsules - I took them 7 days a week, and the pain started around day 3 and lasted until about 2-3 days after that week. Those pains were not the "zingers" you guys are talking about, see my *foot note below. but not a "poor man's zinger" either - Loved that Kaydee! Just had to add that in there, Lol! -- Anyway, after that, I would go back to the constant dull relentless ache that I'm sure we all can relate too.
With the Ibrance I am also having pelvic, low back,and top part of thigh pain (not waist, and not my other tumor areas like sternum and ribs) and I'm trying to figure out if it my tumors getting attacked or is it something else (I have lots of tumors in the regions listed above) Since so many people complain of pain there, too, I thought maybe it is related to our bone marrow with all the activity going on in the bone marrow right now where white cells are made or repressed from making. That theory has holes and does not address the waist pain that Myra and Kaydee voiced, What else could it be? Maybe something hormonal? I don't know. I had forgotten (probably subconsciously on purpose!) that Femera caused god awful hotflashes and they're baaasack......!
Other side effects I am having. Anything you want to ad?
- Tired, run down feeling
- Just mild nausea with light heartburn (twice only) so far. - Hooray!
- Giant poops that border on diarrhea, smelly gas - Weird as I have been dealing with constipation for so long. Aren't you glad this is not a face-to-face discussion, haha!
- Flushed face (Its got to be the Femara)
- A big wart on the end of my nose........only kidding
*On zingers: I think the zingers are coming from big nerves maybe branching from the spine. This is what Wikipedia (the most trusted news source on plant earth! haha...!) had to say: "Bone tissue is innervated by both myelinated ... and unmyelinated ...sensory neurons. In combination, they can provide an initial burst of pain, (zingers?) initiated by the faster myelinated fibers, followed by a slower and longer lasting dull pain initiated by unmyelinated fibers. Nociceptors responsible for bone pain can be activated via several mechanisms including deterioration of surrounding tissue, bone destruction and physical stress which shears the bone, vascular, muscle, and nervous tissue."
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Interesting about the zingers, Vivian, I wish I knew what it meant here! I'm just in the middle of cycle 2 so no scans yet--the wait is terrible, isn't it?
Has anyone who failed Letrozole alone had scans yet and has the Letrozole/Ibrance combo worked anyway? The news about Faslodex with Ibrance is exciting, but I'm wondering if it would be an option for those of us who already failed Faslodex once.
So sorry about the nausea some of you are having. Hope it goes away quickly, that is one of those "lifestyle" changers and it really stinks.
Also, especially for those of you moving on, have any of you seen this study opening in July: http://www.nytimes.com/aponline/2015/06/01/health/... ? Sounds so interesting and so much potential for opening up new treatment options!
I'm doing pretty well, less of that pain right now but I've caught another cold, ugh! But at least this one, unlike the last, seems to be moving on a bit faster--fingers crossed!
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Vivian, you are so cute! Being you live in Ocala, I am in Ft lauderdale, I thought you would know what spinning is. It is really fast stationary bike riding to music, simulating hills and road races. Very intense workout. Some gyms call it indoor cycling classes.
As to pain, mine is definetly in my lt hip. It starts just above the waistline, radiates down my buttocks, and sometimes around to the front of the leg. It is definetly worse when I sit too long. It started on my week off and has continued into this first week. It seems to be attacking where I have known mets, but I also have them down my spine which just gets "numb" sometimes.
I also have flushed face quite often.
Roses, I too have what seems to be a constant cold. My nose runs constantly, and sometimes an added sore throat, but it is not a cold. Perhaps you are dealing with that.
OK, enough! I had a long talk with my therapist yesterday, and Let's Get Organized is going to move forward. I am in the midst of writing a mission statement and determining who I should locally contact to begin a movement. Check that thread and give any suggestions you may have.
Hugs to all, take those pain meds and tell those stupid diseases to go away! Myra.
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hi everybody! I just got my Ibrance. I will be starting after I get my initial blood work, hopefully next week.
I work full time (37hours a week) at JCPenney as a cashier. Do you think I will be able to continue to work
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can I ask, have many of you taking Ibrance had success with this even after letrozole failed? Thank you x
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HI Raine-Wells and welcome! Good luck with the Ibrance. I am still in my first cycle, and although everybody has varying side effects, I think it is doable. I haven't had any real noticeable side effects, other than the drop in WBC. I think the most important concern you would have is the low white blood counts and working in retail with exposure to a lot of people and dealing with money. Of course, talk to your doctor, but anything you could do to protect against germs would be helpful. I know ladies have suggested wearing white cotton gloves on airplanes to protect against germs. Maybe gloves and lots of hand sanitizer.
Hello to everyone else! Vivian you gave me a good laugh!
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Torridon, My TM's were down for the 1st time in a long time (2nd cycle of Ibrance/letrozole) after failing on letrozole alone, and failing on faslodex alone. So I am optimistic, but I have not yet had any scans, so too early to say whether it is a success, although I consider it a success just to be free of bad SE's that I would have on other meds. Although it is not a cure since my cancer is in the bones/lung, more quality time is what I hope for on this drug.
The letrozole/Ibrance is also an improvement for me over the Faslodex, since I had itchy bleeding red bumps on my arms and legs on the Faslodex (However, I am wondering if I will go on the faslodex with ibrance once the letrozole with ibrance stops working - guess it depends on the results of these trials).
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3Holly - Congratulations! I was just talking to my MO and she indicated that Ibrance will be used with the Faslodex if/when we need to move on to another treatment (based on this latest study), so I think if Ibrance is tolerated, it's going to be used in combination with all these other hormonal therapies. That's the direction the drug is going. So hopefully we get the benefit of these drugs until the next new one comes along.
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Torridon- It's hard for most of us to answer your question because the drug is so new to us, too.
"Success" for most of us would mean stability, at least, and reduction in tumor markers. But most of us haven't been scanned and markers are not making dramatic changes yet. I think the majority are waiting for 3 cycles before scanning or looking at tumor markers as evidence of the drug working. Keep watching, though, as the time is approaching soon when we should start seeing some results.
I'm kind of surprised at how different I'm feeling on the 100mgs as opposed to the 125 I started out on. I have to say I have no side effects whatsoever (except for blood counts, which haven't been assessed on the 100 yet).
The itchiness and tiredness I experienced on the 125 are gone. No headaches, either (although I still think that's a Letrozole SE.) Maybe my body has just adjusted, idk. I do hope this doesn't mean it's not doing anything, though.
Funny how we always look at the negative of whatever positive we might be handed. lol.
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My ONC went to ASCO last week and is giving a seminar for patients at the City of Hope this weekend. Its called Patient Research Update, and is meant to discuss new areas of innovative research in breast cancer treatment. I am SURE ibrance w/letrozole and ibrance w/ faslodex will be a big topic of discussion. I will report back next week with any interesting information. It may be stuff we already know or have surmised, but he is very good at explaining the science behind the medications, as well as the study results. I'll take notes.
Any So. Cal. peeps interested in going, its Sunday June 7 from 3:00-5:00 at City of Hope in Duarte. Email philanthropy@coh.org to RSVP. I'm guessing you dont HAVE to be a COH patient.
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Is anyone getting Ibrance covered by their insurance for 2nd or 3rd line treatment? I need a treatment change. Both my oncologist and I want to go with Ibrance. Hormonals have worked so well for me in the past, but I'm getting to the end of the line with them. The cancer center is running it all through United healthcare, but I have a hard time believing they will approe it. Should know in a few weeks.
Marie
St Louis, MO
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I am still waiting for approval, four full business days after my oncologist meeting. Not sure if this would be considered the second or third line for me. I did aromasin as part of my Stage II treatment, and then we added the Faslodex. Dropped the aromasin about two years into the Faslodex since the side effects were too much.
The waiting is starting to annoy me. Is this a normal amount of time in other people's experience?
*susan*
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Marie many of us are second or third line treatment or even more. I really had no issues getting it approved with my CVS Caremark Insurance. But it did take a week and got me a little nervous.
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Marie, if you read this thread, you will see most of us are second or third line and have spoken about it.comsiderably.
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I have finished my second round on 100 mg the first round at 125 mg was stopped after 2 weeks do to low white blood counts. I will have blood work on Friday to see if I can start round 3. I really haven't had any side effects I am working full time 40+ hrs a week in a busy office where everyone has been sick a lot, even with low the low counts I didn't get sick I waited for it to hit but never did I figured I would have been quick to get it. I haven't noticed feeling any different when my counts were the lowest.
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I have United Healthcare. From the time my onco submitted it to the insurance until I received it was 3 weeks
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Susan, I got a 21 free follows me on trial from Pfizer through CarePlus. During this time I was denied insurance and have appealed. God knows how long that will take. In the meantime I'm on my third week, so at least I got to start. I'm hoping now the the FDA has approved Ibrance for second line treatment of paired with Faslodex that my ONC will switch me from Letrazole and I'll be able to get approved. If it doesn't happen within two weeks I've got to cough up ten grand. Yikes!
Hey, is anyone out there already on the Ibrance faslodexcombo? Just wondering.
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I don't know what I was trying to say but it wasn't "follows me on". Lol
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Stef,
Has the FDA already approved with Faslodex? I thought the paper was just presented a few days ago. Haven't read about approval. Do you have a link? Maybe that would strengthen my case? Since I just completed 5 years of Faslodex, I don't expect that my oncologist will want to use that combination.
Guess I have to sit tight and wait this one out.
*susan*
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Susan, I have United Healthcare and I was approved within a week. It went thru Optimum RX with the Pfizer co pay card. Make sure your onc filled out the paperwork correctly. I had failed Letrozole and fasolodex on their own. My onc was involved with that trial and the results were promising. Don't know about approval yet though. Good luck, Myra.
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I don't think Faslodex/Ibrance combo has been FDA approved yet. Trial results were just released, but I haven't heard anymore than that.
Nausea has calmed so all you doubters out there....it really could have been that evil pizza!
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Romansma, glad you are feeling better.
A friend told me the trial results were just released and were positive, so hopefully all the insurance companies will now approve it.
I just looked it up - if I'm reading it correctly, it looks like the ibrance with faslodex (fulvestrant) - in the Paloma 3 trial results - more than doubled the progression free survival rate as opposed to using the faslodex alone, for those who failed previous hormonal therapies. Didn't see anything regarding overall survival rate, but more than doubling the progression free time sounds successful,and I hope this means it will now be FDA approved with the Faslodex as well as with the letrozole (and therefore covered by insurance) for those who may want to try the combo after the ibrance/letrozole stops working, and for those who are already on Faslodex or are considering the Faslodex since the combo is now proven more successful than Faslodex alone.
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susan- As Myra mentioned, it's important that your oncologist's office fills out the form carefully and correctly with your ER+status as well as your mets very clearly marked. Mine was rejected at first because of the way the insurance co read the forms. If you are denied, be sure to ask your onc's office why. They are the ones who should be pushing this through. You might call your doc's office and ask how things are going.
The fact that you're not first line shouldn't make any difference. The majority of us here are not first line and we all were approved. Once the form was corrected (they didn't think I had mets at first as it wasn't listed on page 1) it was approved within a day. (CVS Caremark Specialty)
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Romansma- Thank goodness you're feeling better! Maybe you just caught a bug. Being a bit compromised, it wouldn't be hard to imagine. Is this the last round before you take your break for your trip?
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Right,sorry. My bad. FDA has not yet approved Ibrance as a second line therapy, although it looks like 95% of the women on this board have gotten coverage anyway.
As of yet, I am not one of them. BUT I'm still working on it and since everyone else is getting approved, I have high hopes.
Susan, I just completed 3 years of Faslodex with exemestane, which recently failed. I dont think that excludes me from the Ibrance FAslodex comination, as it has shown to be successful where single use of faslodex has failed. Lets hope so.
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http://www.firstwordpharma.com/node/1284218#axzz3c...
The oncologists are already there. The FDA will soon follow.
Insurance companies don't gain much by denying Ibrance when Affinitor is just as expensive.
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Romansma, glad you're feeling better, now stay away from the pizza, ok?
Susan (and others trying to get Ibrance in a slightly off label way like 2nd line or with Faslodex), a lot of states, including Massachusetts have laws mandating insurances cover drugs for cancer that are off label if they meet certain criteria which, in my opinion, these uses do. The MA statutes are here:
https://malegislature.gov/Laws/GeneralLaws/PartI/TitleXXII/Chapter176B/Section4N
https://malegislature.gov/Laws/GeneralLaws/PartI/TitleXXII/Chapter175/Section47k
https://malegislature.gov/Laws/GeneralLaws/PartI/TitleXXII/Chapter175/Section47l
And in other states, try googling [state name] off label drug coverege.
Good luck, everyone trying to get that approval!
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No idea why that last one didn't link, but it's 3 separate links to the three parts of the statutes
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hello,
On the Pfizer appeal, as others have pointed out, make sure everything is correct. I was denied due to income limits and was asked to summit our 2014 income tax returns along with our household expenses. The appeal was successful. Have your onc's office help you if this the case
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Hi ladies,
I saw on another thread a link that was being discussedbut I was particularly interested in the clinical trial drug that this stage 4 lady was using in combination with Femera: ribociclib. It looks like it is similar to Ibrance but not quite. Has anyone heard of it or know anything about it? I was wondering if this could be an alternative to Ibrance if that doesn't work. Here's the link where it's mentioned.
http://blog.dana-farber.org/insight/2015/06/living...
Hope you all are enjoying a good day!
Joanne
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I saw that too, Joanne. I know there are 3 drugs that all are similar. I think Pfizer just beat the other 2 to market. They are all CDK Inhibitors, but may have slightly different make ups. It will be interesting to see if they are possibilities, but my thought process wonders why one CDK would fail and another work. Although, we see that aromatherapy inhibitors have different mechanisms, so I guess it depends on how different these are. We will have to do a littleness research. For anyone knows. Please help I so out.
Sandilee, yes, when I finish this cycle next week, I will take a break until at least the end of the month so that my WBC has a chance to recover a bit for my Alaska vaca. I also suspect it's scan time. I will have completed 4 cycles, and wthl increasing tumor markers and enlarged nodes, it's probably time to see what's going on! Hoping it's not what I suspect and I get knocked off my chair in surprise!
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Very interesting - it's the LEE01 drug according to my friend. I wonder if she went into the LEE trial prior to the FDA approval of Ibrance. I was offered a trial with the LEE01 drug prior to going to the Ibrance, but it was a trial of 3 drugs (more possible side effects with 3 versus 2 drugs).
Good questions, Romansma, regarding whether one CDK inhibitor can work if another fails. I hope your scans go well, and that you have fun on vacation - cruise to Alaska sounds so exciting!
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I see my earlier post says aromatherapy inhibitors. If only! Sometimes I really hate autocorrect. I meant to say aromotase inhibitors!
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Aromatherapy inhibitor? That would describe my nose during hayfever season!
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I think a clothespin would be an aromatherapy inhibitor, too. (I knew it was autocorrect, Romansma, but thanks for the giggle.
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I was wondering if the Ibrance/Femara combo has worked on breast cancer that has never responded to Femara alone? Does anyone know?
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I know the original trial that got Ibrance FDA approved was first line treatment, so that wouldn't help. We'd have to research the ongoing trials to get answers to that question. However, in theory, it might work because it works as a pathway inhibitor. The pathway it is inhibiting is one that makes the tumor resistant to the Femara. But, that's just a theory/guess. I think it's important to remember that Ibrance doesn't do much on its own. It was developed to make existing drugs more effective by inhibiting pathways that are causing drug resistance.
Love the clothespin aromatherapy inhibitor. Too bad treating cancer wasn't as easy as pinching your nose so you can't smell!
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Hello Ibrance users.. I started Ibrance almost three months ago.
2 months on and one month off due to Neutropenia (severe). Now yesterday I had a CT/PET scan at Florida Proton . Today the lead radiologic oncologist went over in detail all the results. His name is Dr. Roi Dagan and he gives me such meticulous explanations that I am so appreciative of his time. Anyway: Ibrance is working...I do not need VERO radiation due to the fact that the small metastasis to the liver is stable or regressing based on the scans.. True, I am now reduced to 100 mg Ibrance but I am thrilled and so happy that I am stable on Ibrance. Thanks Dr. Roi Dagan for such a detailed analysis which has given me new confidence. Carolyn
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That's awesome news Carolyn! Enjoy your weekend!
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