Ibrance (Palbociclib)
Comments
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Hi AirlineGirl,
It totally sucks vital energy that you were in the "all clear" zone and then found to have MBC. Of course that rocks your foundations! Of course you want to find the best authorities to help you chart a course of action.
There are still so many things you can do to help yourself!!!
Please don't think your choice is giving up your life to conventional medical treatment or giving it up to TTAC!
That's false black and white thinking.
AirlineGirl, here's something I wrote a while ago about my approach to holistic care, something I've successfully engaged for many decades:
https://community.breastcancer.org/forum/79/topics...
Take good care of precious you and find healing allies who can help you too.
Healing wishes, Stephanie
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I just want to note that my little book list above was my way of agreeing with Stephanie's idea that we don't have to make an either/or choice between conventional and alternative, and that we can do things to help ourselves -- think integrative, holistic, and complementary. (I just want to make sure you know I was not trying to give advice to you, Stephanie.)
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Shetland Pony, no offense taken! I'm currently revising my estimations of so many things, so "advice" is welcome, as long as I'm allowed to guide my own craft through the waters. Plus, your contributions are always fascinating and worth reflecting on.
I continue to be grateful that this community allows me to participate! Though I began reading as an interested observer, you are all so engaging, I just keep on showing up to listen, cheer, moan and offer tidbits that might help you navigate your own rough water called MBC.
all best wishes, Stephanie
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Airlinegirl -
The thing I hate about cancer is the loss of control. I like control. The idea that my oncologist is going to try a few things and if that doesn't work I die does not work for me. The books that Shetland offered give you back control. You realize that there are many things you can do, small and large, to change the odds. Complementary medicine is important if only because the standard of care is so paternalistic. Mentally that is very bad, but it is also wrong. Not only do you have to manage your traditional care by getting second opinions, reviewing diagnostics, asking questions, researching the treatments, but there is a lot you need to be doing in addition to traditional care to put yourself in the best position. TTAC doesn't get it right, in my opinion, but the resources that your are getting on this thread are very important.
>Z<
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Hey, I need you guys. I'm sad and scared. Remember those slowly rising TMs? I just saw this week's CA 27-29 result and it rose 17 points. Damn. From teens to fifties over the past twelve months. Four readings out of normal range, including the last three months in a row. I started Ibrance + letrozole after getting NEAD with Taxol, so this isn't a case of Ibrance + Letrozole taking a while to show results. I'm on my 20th cycle. Before this latest result my onc said it could just be a "weird Ibrance thing" but that she was concerned at the upward trend. I haven't heard from her yet about this latest result. I'm afraid that faslodex alone won't be enough, and that anything else will deprive me of my semblance of a normal life.
I know she is thinking of Faslodex to switch me to a different kind of anti-estrogen. Faslodex alone? Faslodex + letrozole + Ibrance? Faslodex + Afinitor? Aromsin + Afinitor? Is there any trial with a PI3K drug that isn't specifically for PI3KCA which I don't have?I keep thinking if I had kept up better with exercise, eaten a little better, started meditating, I could have held this off longer. Guilt. Trying to breathe. I'm already overwhelmed with responsibilities right now. Here comes a flurry of research, appointments and tests.
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Shetland, I'm so sorry you got bad news today regarding rising TMs. When is the last time you were scanned? That's the first thing I would want. Have you never been on Faslodex? I was NED on Faslodex and the AI exemestane for over three years, with pretty much zero SEs. Definately a good combo if you are eligible. It's easy for me to say to you to try not to extrapolate all kinds of bad things until you have more info, but I'm truly guilty of the same thing. But please don't blame yourself for lifestyle choices. You know you could do everything right and this still happens. You could also do everything wrong and never have anything bad happen. You have to live your life without making yourself crazy.
One step at a time. You've dealt with this before. You can do this! Breathe.
Stefanie
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Shetland, so sorry you are stressed right now. As far as tumor markers, my onc says they are only a guide to how we are doing. Scans have the final say. My tumor markers have never been in the normal range but my Pet scan is clear. My current number is 47.5, up from 40. I hope you get some answers soon. Do not feel guilty! All of this is out of our control, this is the hardest thing for me to deal with, as I am a control freak! Hang in there
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Shetland- I'm sorry your tm's have continued up. I know it's easy to question if there's somethimg we've done or not done to cause it. It seems logical to our minds --when in reality this disease does not follow a logic path as we know it at all. Hope you hear from your onc soon.
If you do need to make a treatment change, you have every reason to believe that Faslodex will bring things under control again...and that you will be dancing just as you are now. I just had my first Fas treatment added to Ibrance/Femara. If you end up with this option, I don't think you'll feel much different than you do now. Hope things are settled for you soon!
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Hi Shetland - pairing Ibrance + faslodex works for a lot of ladies, and was part of a major trial after letozole. Check out that thread. I'm using Arimidex along with Ibrance + fas. But please don't overthink your (still) relatively low numbers. TM's are notoriously off, a PET is a better indicator of progression and/or new activity. Let's keep you dancing!
Claire
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I'm sorry about the stress you're under, Shetland, but if it's any consolation to you, I just had a long talk w/my UCLA onc about rising TMs, and she was adamant that she is not concerned about them unless they literally double within one month. Mine had shot up 3 out of the past 4 mos. (about a year into Faslodex+Ibrance, including a 90 pt. increase one month), in spite of stable or better scans in August, so I was very much concerned. But she literally waved off the graph I had brought with me (I get my labs done locally with my Faslodex shots), and wouldn't even look at it. She said they go by scans. Period. Her only other comment was that so many things can influence TMs, including inflammation and even what day we have labs done in our med cycles. Hope this helps. I found it very reassuring!
And stop beating yourself up with the coulda, shoulda, woulda thinking! Last month my TMs dropped 50 pts. -- after a week of travel, lousy eating (compared to my usual mostly organic fruit & veggie diet) and drinking more than I normally do. Doing the things you listed will make you healthier, which is a good thing for many reasons, including tolerating our meds better, but they won't necessarily affect your TMs, as I accidently proved. Get back on track, but stop the guilt trip that you could have done more. I actually do think exercise might be a real key because I did get more of it when I was away than I often do at home and I wonder if it could have impacted my TMs. But whether it did or didn't, it's really important, so just recommit to it if you haven't already.
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Hello - I received Ibrance in the mail as well. Waiting to see my oncologist tomorrow to review PET/scan results which I already went ahead and got. Mets to liver, lymphnodes and groundglass nodules in lungs. I am not sure what else I am supposed to take along with Ibrance. But thank God for medicine.
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Ok, breathing now. Thank you all so much for your replies. And for remembering that I must keep dancing! Stefanie, I am repeating to myself what you said: I have to live my life without making myself crazy. After all, I haven't exactly been a slacker, just not perfect. And Moissy's reminder: This disease does not follow a logical path. Lynnwood, I hear you about control. I always believed I could solve any problem I had if I was willing to learn and work hard, but cancer doesn't work that way. Hard to accept.
You are all right about needing scans to interpret the TMs. I should try to be calmer and see what I can find out from scans. I was scanned last month with my usual three-month PET/CT. The last three scans have shown an area in the liver with slightly higher SUV than the surrounding area, too subtle to call. The first two reports, but not the most recent one, noted a lesion about 2 cm that corresponds with that area. I have asked for the radiologist to look at the most recent scan to see if that has changed size. I also asked about a CT with contrast, because (as I learned at the ILC symposium) sometimes ILC mets aren't very FDG-avid and don't light up enough on the PET, so the CT becomes quite important in those cases. My onc said the CT part of a PET/CT is an inferior CT and agreed to order one with contrast. Now with these markers I hope she will order that for this month. WHY do I the patient have to tell the oncologist and the radiologist to do these things? I am at an NCCN center for heaven's sake.
My TMs have correlated with scans in the past. They halved each taxol cycle, and then the scan showed NEAD, and stayed that way with normal TMs. So that is why my onc and I are concerned. Deanna, that is helpful to know that your onc considers doubling in one month concerning. Mine have not done that. Your 50-point drop on vacation is really fascinating. All I need is a 40-point drop to get back to baseline, and a 20-point drop would get me into normal range. I think if what I am doing does influence the cancer or TMs, in my case exercise and stress may be more important than what I eat. But I know it is not all in my control. Lynnwood, how long have you had clear scans despite abnormal TMs?
I've been on tamoxifen (stage 1 epic fail), Taxol, and Ibrance + letrozole. Faslodex sounds pretty easy, but I am afraid it will not be enough as a second or third line treatment. But maybe something similar to what you do, lalalady and Moissy, would work without affecting my life too much. That is a hopeful thought. I could add Faslodex to the current Ibrance + letrozole. If that doesn't work, maybe swap the Ibrance + letrozole for Afinitor (bleh!). I really need to talk to my onc.
Thanks for the support!
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Hello, roosarider, and Welcome. I am guessing you will get Faslodex/fulvestrant with your Ibrance, since I see (on your other post) that you already had the aromatase inhibitor anastrozole. I see you like to mountain bike. Please join us on the "Stage 4 Fitness 2016" thread if you like.
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Hello Roosarider. Ibrance has some weird side effects but overall isn't too bad. It sometimes in knocks the cancer to the curb. Let us know how it goes for you. Collectively, we've seen it all.
If you fill out your diagnostics and treatment history in your profile AND make it public, it appears in your signature. This helps us all keep each other straight and provide relevant responses. Makes BCO more useful than other sites, IMO.
If everyone would take a moment to update their diagnosis and treatment history with changes, it will help a lot. We're all going through quite a lot. One would like to respond with all the information.
>Z<
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Shetland, my scans have been clear since June, will repeat scans again in December. My tumor markers started at 203 and have basically stayed between 40-50. Just asked my onc at my last visit if they will ever go to the normal range and she said probably not. I tend to freak out about the numbers, always worrying but my onc stresses that they are just a guide and not an absolute.
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Shetland, I am sorry for your stress and livingin uncertainty. I'm holding good thoughts for you as you get through your scans and results. Don't beat yourself up over the past. Keep moving forward and living and loving life.
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Hello ShetlandPony and thank you for the welcome, I will check out the fitness page.
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Shetland, thinking of you and hoping for good results on upcoming scans!
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Thank you Lynnwood, Jen, and singlemom1. Yes, I have to decide to take what action I can to further the investigation, then set this aside and keep living and loving life each day.
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Ladies - I am getting a second opinion on my lone jaw met - found a radiologist near me that has treated one - seeing him on Tuesday. So far so good on round #11 other than numb chin. But here's the fun part - went with my sister last night who scored front row tickets to see Ringo Starr & All Starr band. I'm a teenager again! (())
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Shetland, I'm also so sorry for your rising tumor markers and your stress but until you have a scan, you don't really know what's going on. I certainly understand your agony, we have all been there but MO keeps telling me we have lots of options and not all of them have to ruin our QOL.. I will keep you in my prayers. As others have said, "just breath"
Faith (in the future)
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Lalady1 - I think I am more worried about the bone met in your jaw than you are. I read on another thread that radiation treatment might wipe out your salivary glands. I hope that some systemic treatment like ibrance will take it out. Saliva is a good thing to have. Let us know.
>Z<
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Shetland hang in there...my thoughts and prayers are with you. Lalady1 what fun you must have had. I want to be a teenager too.0
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LaLady,
Good luck with the radiation oncologist. Ask the oncologist if you can speak with his other patient that he treated. I am just wondering what long term side effects she had/is experiencing from the radiation to her jaw. As I previously advised, my neighbor had cancer in his sinus cavity. He had to have a couple of teeth pulled before the radiation four or five years ago and he still has issues from the radiation. Namely his salivary glands and it also messed up his sense of taste. He wakes up several times during the night with severe dry mouth. Are they sure the Ibrance and faslodex can't take care of the jaw met? Worried about you.0 -
Z and Cheryl - no question that rads to jaw will take out some salivary glands - meaning dry mouth and using a fluoride tray on my upper and lower teeth for rest of my life since without saliva your teeth get cavities - hence my second opinion at Hoag and staying on round #11 of ibrance before I do anything else. I'd even go iv chemo again if it would help. lol Never thought I'd say that again, but....Thanks for all your kind thoughts and support. Ibrance holding down the fort everywhere else.
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LaLady, you might want to think about coconut pull for your mouth and teeth. Basically you put a tablespoon of coconut oil in your mouth and swish and push it through your teeth for 10-15 minutes and then spit it our in the trash - don't spit it out it the sink because it will clog up the pipes. The coconutgets rid of all if the bacteria in your mouth and moisturizes at the same time. After doing this brush your teeth normally.
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Hi Len13ka
I'm new to posting on this site. Just wanted to connect as I am also starting the Ibrance trial at Dana Farber on 11/1/16
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welcome Gailpat, I'm sorry you have to be here but hope you will find as the rest of us have, that these are a great group of women. They are strong, supportive, intelligent and comforting. Ask your question, and hopefully someone will have the answer.
I'm curious about the trial you are starting at Dana Farber. Will you be taking Ibrance with a different drug besides the letrozol that most of us here are on? We are all interested in what other options are out there. Good luck with the trial.
Faith (in th future
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Hey Gailpat - I am new as well and starting Ibrance next week 10-25-16 w/ faslodexol? (sp) I wish you the best results and strength during and after. One day at a time.
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Hi Gailpat, I was just at Dana Farber last week for a medical oncologist opinion on my next treatment . She is recommending Femera(letrozole) and Ibrance. I live in CNY so I couldn't participate in any of their clinical trails but I wish you well. I will travel to Dana Farber as necessary because my oncologist at home is not a specialist in breast cancer and I want to have recommendations from someone who is current in all the new treatments.
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