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.
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!
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.
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.
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!
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.
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%.
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.
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.
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
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?
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
Ah Judie, I'm sorry. I really hope your doc can get a handle on this for you.
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.
I am praying that your blood counts come back soon and that you feel some relief.
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.
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.
I've had increasing hot flashes this week. As irritating as they are, I'm happy. Probably means the Femara has some effectiveness. Hopefully
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.
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!
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.
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.
I can feel fatigue building. Very tired. Vivid dreams too. Anyone having more vivid dreams, or just me
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
Thanks for suggesting this thread Romansma, it looks like I could still have ibrance added, I'll find themoney if necessary.
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.
rest up Romansma. Sounds like it is working. Yea !!!!!
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!
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
I meant to say: maybe my body is tired of the cold!
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