Ibrance (Palbociclib)
Comments
-
Tina2 - hairloss. Are you taking anything that supresses estrogen production or blocks estrogen? I mentioned hairloss, thinning, no huge losses or patches like chemo, to my MO, and she suspected the Arimidex vs Ibrance. Arimidex definitely causing joint issues, and the Ibrance, fatigue. I take biotin 5mg/day, which helps nails, not really sure if it helps the hair. Anyone else taking biotin? Quite a range of dosing available. Is 5 mg a lot?
0 -
BlueGirl,
Yes, I'm also on Faslodex and have been since 2011, with the exception of one recent hiatus year. I'd never had a hair issue.
Tina
0 -
Tina, I have similar hair experience to Jaycee. My hair is thin but no balding even after four years. I don't feel the need to wear a wig although I bought one early on. I no longer dye my hair and I do not take Biotin or any other supplements of that kind as I wanted to avoid any extra supplements. But I accept it because of my age.
0 -
I had serious thinning on ibrance and faslodex ( not on arimidex alone) and then changed to Afinitor And exemestane and my hair became luscious- so wasn’t the anti hormonals. Now on Xeloda and no hormonals and hair thinning a lot. My MO never believed ibrance caused hair thinning- but, we know it does.
0 -
Tina...when I was first diagnosed with breast cancer in 2009, I lost all my hair from the TAC chemo. It never really came back after that (even though I was told it would). I had such nice thick hair before too. I was taking Tamoxifen for 5 years and then Femara. I started wearing clip on hair pieces to hide how thin my hair was. When I was diagnosed with Stage IV in 2017 and started Ibrance/Faslodex my hair became even more thin that there was no way I could not go without wearing a wig. So that is where I am right now. I tell myself most times that's it's only hair and I'm still alive, but it still makes me sad sometimes. In fact, just a little while ago I said to my husband that it's too bad I don't have hair, eyebrows and eyelashes because if I did I would look young for my age.
0 -
I lost every hair on my body, nose, and in ears the first time around. A dermatologist said rogaine MAY help, if it did, I’d have to use it for the rest of my life. Um, no thanks.
So now on I/L. Asked another dermatologist, he laughed, pointed to his own bald spot, and thinning hair. Figured that meant nothing could be done.
0 -
When I was on Ibrance 125 mg, it kicked my butt and one of the side effects was thinning hair - and my hair was already thin to begin with! Everyday there was hair all over the sink and bathroom floor. Due to neutropenia I was moved to 100 mg and my hair stopped falling out.
0 -
MIs1 - I'm so sorry about progression. I wish you all the best on the new pill form of Faslodex, hoping it treats you well for a long time!
Regarding hairloss. I did notice a bit of thinning up top the first couple cycles in, but that stopped. My hair took awhile to come back after AC+T, but it came back, gray at first then back to my almost black colored hair plus waves i didn't have before. However, I have lost and grown back my eyebrows at least 3 times since starting Ibrance. I usually don't notice until i try and put mascara on and whoops nothing there to enhance. With this covid stuff going around I'm home more, thus no war paint, thus its a surprise! My eyebrows didn't fully come back from chemo so I fill them in with a pencil. Aside from hair loss, anyone had the opposite problem? Hair gain. Namely the chinny chin chin. Nothing like plucking chin hairs once a week. And not wisps either, thick black hairs. Maybe that's where my eyelashes migrate too!
On my week off now and will start up my 125mg tablets for cycle 8. I'm kinda excited to experiment with these. Will be sniffing and seeing if I notice an aftertaste. Have transplanted my Ibrance box...well.. brick.. into my purse so its always with me. What bulky packaging. Hate to only carry some of it because as much as I try to stay on top of things, I can get really forgetful. Speaking of which, I really really try to take my pills at the same time each day, but really my goal is to just get the pill in no matter when i take it and always take it with food so it absorbs well, is exact timing necessary? Does it decrease effectiveness if your off a few hrs ie: not same of day as you took it last but still taken everyday?
Jackie, I'm so sorry your hair didn't come back. TAC ...is that where you get Adriamycin, Cytoxan and Taxol (or Taxotere) all at the same time not broken up? Mad props there girl! A gal from my chemo group did that regimen too and I called her superwoman!
It's been absolutely gorgeous outside today. Last week hubby and I made a little seating area outside complete with sunflower ambiance. I love sitting out there after I've mowed the lawn, sit out there with my pretty mint crocs on...ipad with me...spotify...nice escape for a bit
Love to you ladies
Edited to add: Sondra, I thought of you and the gif I posted not to long ago this afternoon.. I made exactly that face when I took my mask off after getting outside the store to today. Man does it feel good to breathe!
0 -
My hair thinned a lot when I was on Ibrance and Letrozole and kept thinning even after I stopped the Ibrance. Since I had already gone bald from Chemo 25 years earlier, I really hated losing my hair again. I take 10 mg. of Biotin daily except for a few days before having blood work as it can interfere with lab results.
I also have started using the IRestore Hair helmet and I think it helps a lot. There is a thread on it here at BCO. I tried to post a link but failed. Just put IRestore in the search box and I think you will find it. It’s fairly expensive but one of the girls on the thread contacted the company and they will give a discount to those of us with breast cancer. They also have a six month money back guarantee so it’s definitely worth a try to see if it helps you grow thicker hair again. It has worked for me. I think they have come out with a newer more powerful model but it’s also more expensive. I think the less expensive one is working fine for me. Hope this helps those of you losing hair. And I definitely think it’s the Letrozole that does it. Probably all AI’s will cause you to lose it as it’s the loss of estrogen that is most of the problem.
Take care dear friends, you are all in my prayers.
Faith (in the future)
.
0 -
Miss Rabbit...thank you and yes that is the TAC I had. With each treatment it had gotten worse. By the last I didn't think I was going to make it. It also put me into early menopause. I was only 48 and still getting my period normally every month. After TAC I never got it again.
I was told a big NO on supplements so no Biotin for me.
Your backyard picture looks relaxing. I'm glad you got to enjoy the beautiful outdoors.
0 -
Mls1 - Sorry to hear about your progression. Hope your next treatment works well.
RRabbit - beautiful yard! My oncologist and / or her care team seem very intent on me taking my ibrance every day at the same time. I don't know if that has changed with the new tablet form. One would not think that would be hard to do but darn it, my schedule must be weird which is why I keep the bulky "week" new package in my purse and set an alarm on my phone. I am trying it this cycle at 8:45am. I am usually up early and with working from home these days it seems to be working. I need the alarm because I get busy or on the phone and BAM it's 2 hours late for my Ibrance. I don't think the tablets need to be taken with food but by taking it in the morning, I am taking it right after I eat breakfast.
i decided to go to visit my best friend from high school for a few days to San Francisco. I will be flying but I will be wearing a mask with a filter, and it's only a 2 hour flight. This is a trip that was postponed from March due to Covid. WIth the Covid numbers stable here but slightly on the way back up I figure, now might be the best time to go plus I am in week 1 of Ibrance so my wbc is optimal for me. My oncologist was fine with it and I am looking forward to it! Only a few days but long overdue. She had stage 2 breast cancer 5 years ago, so far is doing fine on Femara.
Hair - mine is thinning but not as much as when I was on CMF in 2009. I normally have extremely thick hair so it is not that noticeable. I would say my brows are definitely thinner. But the chin hair, oh yes that came on with CMF / chemopause (I was 44) , and then femara. After my 6-7 years of femara, it kind of stopped. But I would say Fulvestrant is growing my chin hairs again - I guess that is a sign it is working! I was tempted to stop coloring my hair during covid as my roots were growing out BUT I am still working full time so have to have corporate photos taken a lot and am in the public a lot. I have dark hair naturally (now dyed as it is mostly gray) so a complete grow out will take a LONG time. I decided to wait until I retire/and or if I switch to a treatment where I lose hair.
0 -
When I first started on 125 I noticed my hair seemed thinner, however I have very fine hair (but a lot of it) and pretty short hair. The first haircut after I started Ibrance it seemed thinner, though my hairstylist, who knows it well, didn't comment (although he was possibly way too distracted by trying to fix the crappy temporary cut I had received in the meantime). I dropped to 100 shortly after and hair seems exactly the same as always, just more than i would like given the covid situation.
I have noticed I only have to shave my legs once a month, if that! Same with eyebrow maintenance - I need a wax tidy but I dont have to pluck nearly as much as before.
RRabbit - I got some new cloth masks but after I washed them and hung them to dry I noticed that one style looks like a little athletic supporter hanging on my wash line!
0 -
Hair has thinned dramatically on Ibrance/Arimidex, and also become like straw. No longer coloring, thanks to Covid, now going gray. Just got a super short cut this week to manage all issues. If thinning gets worse, I can always make use of the free wig program at the place I treat. If this is one of the side effects I have to deal with, the only thing it hurts is my self-esteem!!!
0 -
-
Hey Snooky.
Was wondering about you. Do you or did you have MO appt soon? Just wondering. Hugs
0 -
Jack5ie—- you asked awhile back if anyone else noted a foul smell or taste from the new Ibrance tablets.
Well, last night’s tablet tasted AWFUL. I am on my 3 booklet of these new packaged tablets. No foul smell or taste until now. Week 2 of Cycle 5. No odd smell but the tablet tasted like moldy vinyl. (No idea what that would taste like but it’s what came to mind when swallowing my tablet)
Curious to see if tonight’s tablet goes back to no taste or not??
0 -
Hi there Candy, have n.bone scan scheduled for tomorrow. Onc apt on Wednesday
0 -
Snooky- In your pocket for scan and results. Let me know how it goes.
Yesterday and today I am attending the online conference from Living Beyond Breast Cancer. The sessions/speakers will be available to view on their website after Friday June 19. Some really interesting. Some, truthfully, realistic and upsetting. I watched one yesterday about Precision Therapy. The speakers-- 2 MD's- seemed to be saying that there is standard therapy for MBC and pretty much that is it. That was my takeaway. Some atendees asked about genomic testing for mutations. The docs said the testing was fine, but what are you going to do with the results. Something I learned was that a MBC patient may have mutations seen in other cancers (colon, melanoma, etc) but the treatments for that mutation in the other cancers doesn't work for breast. So my take away was that we have the standard treatment for HR+ HER2-, triple negative, etc. And now PIC3CA mutation meds. But other than that, MBC treatments are minimal.
Cure-ious ----what do you think of this?
I know we talk a lot about mutations, trials, etc. But sounds to me like the meds we all have heard of are it for us. Limited to a handful.
Anyone else here attending the conference???
0 -
Candy,
I posted on bone mets thread and on lobular thread -- I attended yesterday but today I was driving all day so could not. I will watch info that's posted from today.
I watched the same session that you did, with Dr. Wagle from Dana Farber and Dr. Carey from UNC. Your perspective on their talk is a bit different from mine. On the genomic stuff, I took away that there are CERTAIN things that they know to look for, and those can guide treatment, but there are others that they don't yet know how to treat. But I didn't think they discouraged the tests, especially the ones that have been substantiated. I do think they used that opportunity to push folks to enter clinical trials, which is where the hope in treatment lies -- I think that's right. (Also, realize that Wagle is a research physician and really digs clinical research. Carey was Elizabeth Edward's doc when she had MBC.)
I also took away about the mutations seen in other cancers that maybe the treatments for other cancers won't work -- again, I think they were pushing for people to enter clinical trials so docs could see. I didn't think they were saying -- no go to these other treatments? But that sometimes they won't work with breast cancer, so they are still testing.
Finally, I thought that their comments about the MBC "playbook" were more directed to NCCN regimens that most docs follow, and their point was that even community oncologists can find out that information. I don't think they were saying -- this is it, and that's all. In fact, I found them both to be more hopeful than that -- especially Wagle, who talked about how far we've come in a few years.
I hope that someone else watched the conference, and can break the tie here. I am usually the glass hall full person, but I really felt positive about their presentation and felt that good things are in the pipeline.
0 -
BevJen- I appreciate your take on the presentation. I want to listen to it again when it is posted to the LBBC website. Maybe I took it wrong yesterday. I didn't take notes. And you know how it can be, maybe distracted or in a certain mood. I want to listen again.
I did post a question about having Foundation One in 2017 at diagnosis and wondered about repeating at time of progression. The moderators mentioned my question in the Q&A and I thought the presenters seemed to lean to the opinion that the testing is only good if we have FDA proven treatments for the mutations. And that doing the test is essentially worthless without proven meds to use for the results. Kind of like, no use repeating, or doing test initially even.
I too understood the "playbook" as the NCCN guidelines, even though they didn't say "NCCN guidelines". But, yet again, that means following the FDA approved meds we have all heard of for our treatments, and next treatments. So step 1 is ___, then step 2 at progression is ___, and so on. A limited number. If HR+ HER2- then AI and CDK 4/6 inhibitor, then at progression if PIC3CA mutation use Piqray. Then on to chemos. Limited number of possible treatment plans.
Anyone else with their take on the presentation?
0 -
I did not watch that show but my NP is very up-front. When I asked what's after Zeloda (hormonals don't work for me) She said just chemo.. I was surprised. She hung her head and said Sue there's just nothing. She said nothing new was coming up either. Wished I hadn't asked. I've just put it in Gods hands. I'm not gonna die until it's HIS timing. It's all been planned out
0 -
I was diagnosed in Jan. 2017 with MBC. I had taxol then Ibrance Letrozole until this past winter when cancer was found in my left lymph nodes, but it was HER2+. So I was taken off Ibrance and put on Herceptin/Perjeta. By Jan. they realized I have two different stage 4 cancers. I'm back on Ibrance again too. I was almost disappointed that I'm still ER+ because it seems like there now are more and more treatments for HER+ and even even triple negative. Doesn't it seem that there just isn't much on horizon for ER+?
0 -
Snooky, i wish i could give your NP a huge hug for having such a big heart and having such a tough job where you have mostly bad news to offer. But its also just because of course she has no idea whats in the pipeline, and follows what she hears from her doc...
that's my takeaway about this meeting as well, nothing surprising in what you guys are saying about any of these docs opinions- I haven't been tested yet (tho I'm a huge advocate of testing) because my doc says these tests don't often change what they do in practice. She also helpfully offers that "this is all palliative anyway" It's not a university hospital or connected to clinical trials, so shes not hearing about promising trials. She sees her job as dispensing the FDA-approved stuff. So I depend on her for regular scans and keep up with my prescription refills, and deeply respect her knowledge and insights derived from her experience with many other patients; but in no way would I rely on her to direct my path. I expect to have to fly out to MD Anderson or UCSF (or wherever) to consult on clinical trials, early as I can. The chance of any particular trial working is low, but on average those who enter trials have a better outcome, and that advantage is only going to get bigger with time.
BevJen and Candy, you guys may have come away from the presentations with different takes because you came in with different expectations. I have been so disappointed at some of the big oncology conferences because there was so freaking little new for us, but softened my opinion later after better understanding of the incremental progress that was made- the waiting is very hard, and we need stuff now!
0 -
Okay, here's another question from an Ibrance novice: how often do you get scans?
Tina
0 -
Tina, I was getting a CT scan every 3 months this past year but doc is going to wait 4 months now as as my CTS have been stable or better. Insurance only pays for a yearly PET., which they approved for the end of July.
0 -
Tina2, The frequency and type of scans depends on your insurance according to the several conversations I have read here; it is a frequent question because it varies so much! There seems to not be a consensus at all. I get a PET scan every three months. I went to six months twice when I was stable but went right back to three months when slight progression showed. I know others will chime in but I think the important thing is to compare the same type of scan. What shows on one may show differently on another.
0 -
Re:HR+ treatment pipeline - it does seem as though when there is a news splash on here or some other site that its ALWAYS for TNBC or HER2+. I imagine that is a function of a big shift some years ago to coming up with better solutions for those ladies and now its time to get one or more of those drugs to payout on the development costs.
Re:the playbook approach - that is more or less how the NHS operates and while that is probably ok for the first line or two, I want someone to have some creative thinking when it comes time. Or Ive still always wondered about why not doing a short course of chemo up front and then going to the hormonals to maintain - surely someone ran a trial on this somewhere? Unfortunately there is no free ride in life and no matter who is paying there is always a cost/benefit to be run, but surely even within that paradigm there is some leeway of cost of treatment/basis for approach. Although honestly, why I was offered IVF is still mindblowing!
Re: Scans - Tina, Im supposed to CT w/contrast scan every three months, but in reality I scanned early (10 weeks on I/L) and now I'm 4 months (today even!) due to Covid. They said with improvement/stability that would move to 6 months. I get an extra trip through the MRI today due to some ongoing structural issues with a different part of my back with existing degeneration and a recommendation based on the last CT to scan that area. They seem to love MRIing my spine - I can't tell you how many of those I've had!
0 -
Tina,
When I switched my care to Hopkins in May of 2019, they were not very definitive about how often I would have scans. There was no "plan" for that, at least not expressed to me. However as it turns out, my scanning has been on a three month schedule for my MO -- and as well, a three month schedule for my interventional radiologist (who wants MRIs of my liver/abdomen post microwave ablation last July). I'm just trying to get these two more lined up. Now my MO seems to like to look at the MRIs, so I'm wondering if that will keep up even if the IR stops seeing me at some point.
My MO insists on CT exams with contrast. My last PET was in May 2019 with my former MO.
Cure-ious,
Interesting observation about Candy's perspective versus mine about the presentation that we both watched, and Candy, I will also rewatch at some point (right now too much information overload). Cure, you may be right about how we come into it, though. I have 25 different mutations, and so there seems to me to be a lot of things that they could try on me. Whether or not they would, I have no idea. I do know that when my F1 report arrived, my MO was absolutely gleeful about the number of mutations -- she said that it gives them more "options" to try. So maybe that colors my perspective a lot -- I feel like they could throw the spaghetti at the wall and maybe I could buy some more time until even more treatments are available. Plus, I did get 13 years on letrozole alone, so that also colors my perspective, I guess. However, I do think that all of this takes MUCH more time than it should -- especially since we see how the FDA can move more quickly (COVID19) when it really wants to -- when will they feel this urgency about MBC???
0 -
Just home from my super fun morning at the hospital. Things went about as smoothly as possible; they had some good moving teams on both the CT and MRI side so almost no delays, the nurse putting in the cannula did an awesome job, and the doctor running the show had the foresight to get me changed for the MRI at the start, even though CT was first. But that is ok - I would rather have the gowns on for the CT than having to do the weird pants down stunt.
Turned out the order was indeed for another full-spine MRI which, let me tell you, is not fun after you've sucked down a bunch of water and contrast for the CT. I had to pee so bad the last ten minutes. Masks were mandatory, but I had one of my new cloth masks that allowed me to breathe much better than the normal hospital ones, and after I let the tech know I had a little bit of panic at the last one they made sure to check on me before each of the sequences.
Anyway, results expected for MO appointment on the 25th.
0 -
Just now getting back to the conversation--- offline since I posted, needed an eye break from the computer screen.
True, it could be how I went into the conference. And I am unfamiliar with the big conferences-- this one was a first for me. My F1 was done at diagnosis by my last MO. Why then and not later, I don't know. 5 mutations, 1 actionable (at that time). I have always wondered about repeating the test when I have progression to see if more mutations have came about and also if any more of them have potential trials or treatments. But I cannot get an answer to if I should retest. Then when the presenters at the conference said they pretty much just stick to approved treatments (my interpretation of what they said), I felt defeated. So... we just use what is out there, what drugs we see on commercials and what I read you guys are on--- Piqray, PARP, Faslodex, Xeloda. And it feels like not that many options. Scary.
Then after that session on Saturday, I went to another session and the panel of LBBC volunteers seemed so upbeat. They talked about their GREAT relationships with their MO's, and having a naturopath, a nutritionist, palliative care, acupuncture, etc. I am in a rural area with just my MO and office nurses. We don't have access to all the other stuff in my area without having to travel. I was upset then too. Just feeling like I don't have a very good future--- take the meds we know are out there and have limited services from my MO office.
I liked the conference over all--- good to hear the speakers. Just feel the disconnect of a large cancer center and big city versus rural America and what patients are offered in those areas.
Snooky- I too know my life is in God's hands. I just want the control, you know. Prayers for you and your tests and appt.
Sondra- I too want the "creative thinking". Think outside the box. Not just step 1, step 2, etc until that is it.
Tina- I think the insurance companies are the true drivers of the testing, not our MO's. I do CT with contrast every 3 months. PET denied unless progression on CT. And last letter I got from my insurance said next CT 4 months if still stable.
0
