Ibrance (Palbociclib)
Comments
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Hi all,
I started taking ibrance & faslodex in March (6 rounds). I met with my onc today and reviewed my PET scan done a few days ago. Unfortunately the scan shows many new spots and several tumors that have increased in size. Disappointing as my scan from May showed no new spots and shrinkage of tumors. My onc recommended new course of treatment: Exemestane, Afinitor, and Xgera. Has anyone taken this combination? What were the side effects like? I tolerated the ibrance and faslodex well and hoping to hear more about this new combo.
Thank you!
Susan
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Susan,
The Afinitor/Exemestane/Xgeva combination gave me a full year of non-progression. I did have a few side effects, none of which kept me from working or going about daily activities. During the first couple of months, I had some really painful mouth sores, which did not respond to any treatments until my MO prescribed MuGard mouth rinse. After the first few doses, the sores disappeared and never returned, even when I stopped using the MuGard. I also experienced bouts of diarrhea at first, but that also subsided in a few weeks. I've always walked regularly, and I did find myself "wearing out" a little sooner than usual, but was able to recoup my usual walking rate and distance over a period of few weeks.
Hoping that this gives you years instead of months! Please keep us posted on how you're doing.
Angela
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Hi Susan,
Sorry to hear of the progression on Ibrance/faslodex. Lousy to leave a treatment that's treated you well and move into the unknown.
You'll want to join this bco community or at least read up there. It's dated 2013, but it's still the active A/A topic here
Xgeva is a bone strengthener. I assume you're moving on from a bisphosphonate like Zometa?
You can find out more about these drugs and life with bone mets at
Bone Mets Thread
You should find others in similar situations there who can help answer your questions, offer support and to appreciate what you bring to the group.
Good wishes as you move into the next unknown!
Healing regards, Stephanie
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Got to the end of my first 21 days on Ibrance. Except for one 24 hour period of flu-like symptoms, I haven't had much in the way of side effects. My MO says that my blood counts are only half what they need to be to start the next cycle. (It's weird, though, because I feel pretty normal.)
We'll wait to start the next cycle, and it may be on the next lower dose.
Anyone have any tips on what to eat or drink to get the counts back up?
Susan - sorry to hear of your progression. Hoping the next tx does its job and kicks those tumors to the curb.
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oh Susan so sorry about the progression after just 6 months on Ibrance. That is mighty disappointing. May the next treatment keep you stable for many many years!
I just finished cycle 8 of Ibrance. I am at this moment waiting to get a bone scan. Just got done with ct scans. I'll get results next week. It sucks living life in 4 month increments.
Sigh...
Cathy
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Cathy - crossing my fingers for excellent scans.
Ninetwelve - Hoping your counts go up quickly. Personnally, I suspect that the low blood counts have almost no symptoms and fatigue people feel is entirely something else. I say this because I have extreme fatigue on this protocol and my counts are fine.
>Z<
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Susan - I'm sorry to hear that Ibrance has stopped working for you. Hope you get great and longer results on A/A. Wishing you well.
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That's an interesting idea, Z, that the fatigue may not correlate with blood counts.
Eelder, what a strong statement your oncs made about hope being an important part of our treatment. My therapist (PsyD) often mentions that our mental states have physiological effects. The way she describes it, we do not need the false kind of "positive thinking" that takes energy to deny reality or how we feel, but rather we need to recognize that we and our doctors really do not know what our future will be, and it could be a good one. Or something like that.
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Hi Ladies,
Looking for a little advice. I am due to start taking Ibrance again today after my 7 days off. This is my 12th round. I wasn't feeling well yesterday with a sore throat and being achy. Today I have a fever of 99.9. I am not sure if I should start back up with the Ibrance? Wait and talk to doc on Monday if not better? go to walk in? or call on call oncologist? Anyone else have a similar situation?
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singlemom, I'm not an onc, but I would personally wait if you're sick. An extra day or two off won't hurt -- I usually need an extra week off each cycle for counts to rebound. The one time I actually got sick (around round #5), I was told not to restart until I was feeling better, and that time I think I was off a bit more than two weeks. If you're not comfortable simply holding off a day or two to restart, I would call your onc for direction.
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Shetland Pony.... exactly. False optimism (lies) don't do us any good. But the reality is MBC is different today than it was 10 years ago. I'm told this often when I meet with my doctor. We have more treatments. We have more on the way (think 1-2 years!). If they can figure out immunotherapy we have that too. We don't know what the future holds and THAT is something I struggle with immensely, like all of you. But when you dissect that idea - that we don't know what the future holds - it means our future COULD be long.... and bright.... and we could all defy the odds. I think it's important to focus on the positive possibilities because they are IN FACT real possibilities. I am choosing to focus on the positive. There are people who have been on ibrance for FIVE+ years! Imagine. And there are other treatments after that and more coming down the pipe.... does that mean we're guaranteed decades? NO. But I hear of stories of women who have been fighting MBC for 20-ish years.... starting at a time when we didn't have nearly the options we have now. It's not a guarantee, but it's possible. I'd rather spend the rest of my life thinking hopefully than assuming the worst. Mindset DOES matter.
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Thank you dib823!
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singlemom - I routinely back off Ibrance when I have some other health drama going on. I soldiered through trouble early on - took ibrance through an infection/antibiotic thing - and learned not to do that again. The side effects on top of an illness are just too hard. I have significant side effects on this drug. Beat your illness then take on the cancer would be my advice.
Ibrance is a marathon, not a sprint like some chemo treatment. I've made adjustments to the schedule a few times and I've done well on the treatment. The goal appears to be to stay on this protocol for years so you have to stay well.
You do want to have this conversation with your Onc when you see him/her next but mine has given me discretion to adjust...
>Z<
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Well said, Eelder! If we can keep our health and wits about us for a few years, there are better drugs with fewer SEs coming along. For example, Ras is the most commonly mutated protein in all cancers, but there has never been an effective drug until now, which was just reported in Nature
https://www.sciencedaily.com/releases/2016/09/1609...
Has yet to be tested in mice, let alone humans, but is still remarkable progress.
Hope is powerful stuff.
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eelder,
Thanks so much for your last post. I just bookmarked it and will read it when the doubts and anxiety start circling.
Angela
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eelder - Adding my "Amen" to your post. It really is new terrain we're covering.
Today is my cancerversary - 2 years since my diagnosis. I remember sitting right here at my desk when I got the call and feeling absolutely numb. Of course I googled my "chances" and found the "80% of stage IV's are dead at the five year point" factoid. I don't believe it.
Even if it's true, that still leaves an intriguing 20% who are beating the odds. I think in this next decade or so we will level up both our life expectations and our tools for healing. One day, metastatic cancer may be an illness that doesn't have to be fatal. I hope I may live to see that day. May we all live to see it.
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NineTwelve, I am happy that you didn't believe what you read on Google two years ago. Here you are, two years into your diagnosis, looking forward to many more years of living. Woohoo!
Eelder, I also try to focus on positive possibilities. There is no way to accurately predict what treatments will prove successful and be available in the next few years. The research continues to grow in new directions.
Lynne
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Hi Shet- Still lurking here even though I am not on Ibrance. I get the second loading dose of faslodex on Wednesday. To answer your questions... Ibrance and letrozole stopped working sometime from June- to end of August- so after 10 months. End of May scans were good.
Ibrance kept getting lowered and lowered as my numbers tanked. MO said he would not add it back in now- I have bone mets and skull mets... I had uptake in bone scan in skull from day one. As far as the Sandpiper trial goes... they are testing me now to see I have any mutation that I could benefit from by adding that to Faslodex. BUT it takes 4 months for this testing to come back so no, I am not waiting. But if I am positive for the mutation, trial is in Phase 3 and should be approved soon. An option to add later on if I do well on faslodex. MO said the SE were troublesome but did not elaborate and I did not ask.
As for faslodex - To all of you Ibrance sisters, I feel no different now then I did on Ibrance. I am still tired, I ache, (not met pain where you need pain meds) but my scalp is still sore, I get those little jabs in my head, I think it is some sort of neuropathy in other areas, or some new met growing and then th next day it is gone... so I am now sure that the lack of estrogen plays a big role in this. My discomfort sometimes feels like a sunburn but if you rub the area you feel no pain. If that makes any kind of sense. My knees really bothered me today along where I have the femur rod. I went out of the box a bit on Saturday night and danced at a special event-- I danced to Black Eye Peas.. "Tonights gonna be a good night".... and I am paying now.. I should be singing "I haven't got time for the pain" but all in all I had a nice time.
I can be my worst own enemy- I do a great job at that sometimes. All in all I think the letroazole and Faslodex are the culprit in being tired... JMO-
Hugs to all,
Carol
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NineTwelve.... already 2.5 years into your diagnosis. Halfway there to DEFYING ODDS. Visualize that, focus on that.... I'm cheering you on. I don't think these stats are accurate anymore. I'm not saying we WANT Stage IV (no way.... wish I could hand it back today), but as my oncologist says, "We're in a new era with MBC. We really don't know what will happen" (and that is a HOPEFUL AND POSITIVE uncertainty....). I'll take it.
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Carol - I have all kinds of aches and pains and fatigue that don't track with the Ibrance dose, so I am sure it is the letrozol. I have that scalp thing too. The latest thing is that I am clearly losing muscle mass and I can't build it up. And lately I am getting this overwhelming muscle fatigue, like I did 3 crossfit trainings in a row but in fact I have take a few quiet days. I am having a hard time imagining the rest of a hopefully long life on letrozol.
That has me down right now, even though the tumors are receding on this protocol. The only certain thing is that outcomes will be better than they were. We are in uncharted territory, statistically speaking, as far as outcomes are concerned. If that is the case, then I'd like to be alive and WELL. Asking a lot I know ...
All - There is a nurse (Elizabeth, EV11) on Inspire who has breast cancer, is on Ibrance and is overseen by some of the research docs/pharamacists who did the clinical trial. She always has interesting things to say and I will quote her recent post regarding dosing strategies, for those struggling with dose adjustments. Elizabeth's dosing discussion raises 10 more questions than it answers, but it does help me understand the logic behind the recommended protocols and some decision making/ recommendations they make.
Ibrance works to suppress progression through the cell reproduction cycle--it doesn't kill cells (neither cancer cells nor other rapidly-reproducing cells like immature blood cells, hair cells, etc). Once you stop taking Ibrance your body will break down the residual medication after 3-5 days (Ibrance has about a 30-hour half life in people with well-functioning livers) and the immature RBCs and WBCs can mature and be released into the bloodstream. Typically using one of the colony stimulating medications (Neupogen/Neulasta or Epogen) is not a long-term approach to managing Ibrance-type neutropenia (as opposed to low counts as a result of cell death caused by chemo...) So it might help as a one-time thing to get your counts up now if they are concerning in and of themselves, but it is generally not a good approach to trying to stay on Ibrance. Best thing is to try to identify what has changed to make your recovery different this time....and work on treating that problem.
As we were contemplating lowering me to the 75 mg does last summer, a research pharmacist had offered some suggestions about alternate dosing approaches if I couldn't tolerate 21/7 on 75 mg....so if you are having something affect your bone marrow WBC/RBC production, but not having disease progression, it is not unreasonable to consider taking it on a different schedule if low counts persist after you recover from this cycle's effects:
His general guidelines for designing a different dosing schedule was:
Take doses consecutively (don't do every-other-day dosing)
Try to work towards more time on med than off
Not to think that you have to take it/be off it in 7 day increments. (so 18 days on, 10 days off might work, for example; or 14 days on, 8 days off, etc...it will take some trial and error.)>Z<
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Z, thanks for sharing that information. I find it all fascinating that there is not enough evidence because of the drug being so new that they cannot say for sure that by my constant lowering doses of Ibrance was not the cause of my progression. As a lay person just looking at my TM's- They held absolutely the same steady from Nov-March- at 60- on the 125mg dose. In March I got sick with fever and congestion and at the next cycle they had me start up at 100 mg. I had to take an extra week off before that, and then I started the 100mg. If my memory serves me correctly the next marker with the extra week off showed a 20 point rise in the 27-29 and from that point on I was not able to continue like I wish I could have on Ibrance. I Didn't make the complete 3 weeks on 100 the next time and had to take another week off, and the story continued till I did a couple cycles of 75 on 2 and off 2- By this time my TM's were 200- and the rest is history.
My gut feeling is that I am going to need a liver biopsy to tell us more information. I feel absolutely no different off of Ibrance then I did on. With more sensitivity in my scalp or my skull. New MO told me that was from lack of estrogen not the skull mets. I beg to differ with him, but this I know for sure. I caved and took some advil yesterday and the aches were 80% better. I hope you don't mind me lurking here, but I wanted to share as much as I can.. I even started a journal. I wonder how much xgeva plays in all this too. Did you know that xgeva has a half life of 28 days? wow...
Hugs, Carol
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Hi Carol - I've been thinking about you and hoping new protocol works. Please lurk and share here. I start (drum roll) round #10 of ibrance + fas on Thursday. I am stable, with one stray lung nodule that turned out to be benign. My sternum is healing, but left lung requires monthly drains at UCLA. From what I see (I watch metrics closely), we either tolerate ibrance or we don't. Faslodex has less SE's, but seems to work better (more efficiently) when paired with ibrance. I hope it can help you get NED, but your onc may consider Madame X too. Was that discussed? My UCLA onc (along with Dee's) was part of the palbo clinical study and has a few ladies on it for over 2 years - but not 5 years. I wish some of the original clinical trial ladies were on this board to respond how they are doing. Nine Twelve, are you 2 months into Stage 4, and 2 years out from original diagnosis? Rooting for you. Stay positive. I still work and enjoy being productive which helps stay positive. Family is very important too. Z - you are my hero, and I'm walking a mile this morning with a smile. And I signed up for a Xmas Market tour Nuremberg - Vienna on December 7-15th - taking my teacher sister from AZ who has never been to Europe. I am trying to get travel in these first Stage 4 years, so if I am tired later on I have no regrets. Lol on my IRAs outlasting me. So glad I downsized to a townhouse 3 years ago after chemo. Makes it easier to travel and run my home. Hugs to all!
Claire
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Claire- yes Xeloda is probably next unless they feel I qualify for a clinical trial.
Hugs Carol
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Hello Carol,
You're doing well enough and not far along with treatment options that I encourage you to explore Phase III clinical trials, but would offer that you may want to evaluate risking your health and life on a Phase I trial. Those are to determine whether a drug or other approach is safe and has any merit at all, not to improve patients' health, well-being, longevity or any of the things that truly matter to us.
Phase II trials can go either way and are worth much evaluation.
Be aware that many clinicians, especially those in cancer centers, receive compensation for enrolling patients in clinical trials.
In my mind anyway, there's a potential conflict of interest.
And many clinical trials disallow any other competing "data" like CAM and integrative substances.
For me, the imaging schedule of every 8 weeks was too daunting to participate in even a Phase III trial.
Oh yes, I don't think any trials use a placebo vs. treatment. Placebos may be combined with with an existing treatment in one arm of the trial, while the other arm investigates the new drug combined with an existing treatment. Example: an existing chemotherapy treatment may be combined with either a placebo or the new drug. Results are then compared. Femara + Ibrance and Faslodex + Ibrance were tested against the existing treatment, not no treatment at all.
I hope this is helpful for you and others facing a choice to pursue cancer clinical trials.
I'm not bad mouthing clinical trials, but believe in informed consent!
Very much loving kindness for all, Stephanie
Resources:
National Cancer Institute Phases of Clinical Trials
ASCO's CancerNet Phases of Clinical Trials
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Claire - now you are inspiring me. I needed a kick in the pants to get some exercise today. Apparently I have my reputation at stake.
Carol - In my opinion, if anyone has ever been on Ibrance, we want their input here. There are also folks who have a lot to contribute even if they haven't been on Ibrance. I hope everyone feels comfortable contributing here when they have something relevant to say.
The big question, of course, is what are we going to do after Ibrance stops working. And it's impossible to understand some aspects of what happened on Ibrance until it is over and you are looking back. Certainly people who have not been on Ibrance have an important perspective as well.
Tumor markers have been counter-indicative for me: they have gone up as my tumors shrank and then disappeared. I don't know what to make of them when it comes to treatment decisions.
All - My big question is this: If Ibrance only stops growing cells, then why are eelder and I and many others seeing a reduction and disappearance of tumors on this protocol. Cancer cells are supposedly immortal. So if the drug does not kill them the tumor should simply remain there but dormant.
I am taking alpha lipoic acid which may interfere with anaerobic metabolism, among many things, and can kill a cancer cell; however, eelder is taking minimal additional supplements and still seeing a reduction in tumor size. Something in the letrozol/ibrance protocol is killing the cancer cells or the tumors would not disappear. My onc isn't a research level oncologist and has no answer for this. I am very curious if you ladies working with researchers could ask this question.
>Z<
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Z, when I met with last MO (first time with him) he took out that little pad of paper and started out with... So you had ILC back in 1997. A hysterectomy in 1999- then said that's why you had an 18 year remission. He said if this was you today treatment would not had been A/C - I told him I thought it came back because taxetere was in trial then and if there was any benefit and I didn't do that. I assumed that's where I messed up. Bottom line it was hormone therapy that worked for me even after the 8 years I stopped. I was on for 10 years after I had ILC 2 pos nodes.
It is very unlikely that when b/c shoes back its ugly face that it would be rare not to be the original cancer unless a new tumor in breast appeared. I think at 64 I am a weak estrogen positive now. I'm interested to know what the liver would show. Bone biopsy is just not reliable for er receptors because of the calcification they have to do. I have it in my head that I am now her2 - I will ask all your questions when I see him at end of month
Steph- a clinical trial in phase 3 that I would qualify for I would consider. I'm not frigging around with any trials for anyone else's behalf. Look at Ibrance as an example. How do we really know that for sure that it's the letrzole or faslodex that's really the one holding the fort down. I guess I will surely know soon with me.
Hugs to all, and the biggest hug to STEPH xx0 -
Z.... I have that same question. When I started on ibrance it was "advertised" as a treatment that delayed progression. I was never told to expect it to kill cells/reduce tumor size. I wasn't necessarily told it wouldn't do that, but that was definitely not an expectation. I have another scan in mid-October. Of course I'm exceedingly anxious and nervous. If my liver lesions continue to reduce in size it does beg the question- how is this happening? What is causing the cells to die? I wish we knew and no one in my team is really discussing it (though to be fair I didn't really ask).
Could it be that the ibrance protocol stops the multiplying and without that THEN they die off? I admit I'm confused....
Z.... are you still on high doses of alpha lipoic acid? I'm only on 300mg/day, but 900 mg/day during my week off.
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Hi, I started Ibrance (with Faslodex + Zometa) in June of this year, so please shoo me away if this is only 2015 folks. Today I finished my 4th cycle of Ibrance, and for the most part have been tolerating this combo fairly well. Best of all, my pain and tumor markers have plummeted (though remain scary high), from 930 in June to 316 in late August. I'm nearly free of pain now, except for strong aches that come in the week or so after the monthly Faslodex injections. I'm hoping all of that points to the treatments working, but we won't know for sure until next week, when I get my first PET-CT since my diagnosis in May. Fingers crossed!
One question for you all: Does anyone feel as though they've become way more sensitive to pain, especially on your skin and gums? Granted, I've always been a wimp about pain, but getting a crown recently was just miserable, even after two attempts at numbing me - which itself hurt like crazy. And I still ache at that tooth, nearly 2 weeks since the procedure.
I look forward to posting an update after next week's scan! And thank you all for sharing your experiences and knowledge so generously.0 -
Everyone's tumor expresses tumor marker numbers differently and about 25% of us barely express anything. For example, my TM's at diagnosis were 40. Yes.... 40. I had a 2.5cm breast mass, an infected node, and three smallish lesions on my liver. But my TM's were 40. After 3 months there were 20. And they remain at 20 (I'm finishing my 5th cycle). I am one of those 25% that doesn't express the "chemical or whatever" that they're measuring to gauge TM levels. So, my oncologist does them every other month for me but has chosen to not really rely on them. We'll rely on scans. I think they are helpful in following trends. Are your TM's going up? Down? level? That is probably more helpful than the number itself. Hope this makes sense.
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Carol- Good to hear from you! Z is right, we all want to hear about life after Ibrance!! And so many clinical trials to research- for example, is Xeloda in any clinical trials involving combination with immunotherapy? That might be worth checking out... I know most clinical trials go nowhere, but if there ever was a time to try a trial, its now and with immunotherapy, and better earlier than later, because immunotherapy, if it works, is more likely to keep on working and not give resistance than targeted drugs..
Claire- Ooh, Christmas markets are on my bucket list too! I just got back from a 3 week Mother-Daughter trip to Stockholm, Brussels, Amsterdam, and Bergen (Norway)- that was life-transformingly awesome! I'd been before, but my daughter (age 20) had never been to any of those places, and so I got to show her so many favorite spots! Now she is happily back at college, had a real break from academics. Also, the dollar is very strong against the euro right now, so have a blast!
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