Ibrance (Palbociclib)
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Amarantha, hot chocolate with grand marnier sounds wonderful. You gals in the southern states going through the cold snap deserve something warm and comforting. I went to travel agent today to talk about summer trip to British Isles and airlines had an hour and a half call wait time. Atlanta hub closed, so everyone is trying to rebook.
Pat, 75mg sounds like prayers answered. And such great news about Keytruda, What do they test to see if you qualify?
Candy, prayers to you that your labs improve. Don't forget that letrozole is strong unto itself. The rib soreness could be healing. Keep us posted on your CT results.
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Jaylea, this is it:
"These tests can measure your tumor for different biomarkers, including a biomarker called PD‑L1. Biomarker tests may be used to help predict your response to certain treatments, such as KEYTRUDA. Talk to your doctor to see if a PD‑L1 biomarker test is right for you."
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Amarantha, will miss your posts but hope you will come back and share your journey that I pray is full of success.
To our new friends, Ibrance has been wonderful for me since August and shrunk my mets down significantly I’m just 4 months. Fatigue? Check Weight gain? Malaise? Hair thinning? Got those too. But all in all, not a bad deal, considering where I was sitting a few month ago with a Stage 4 diagnosis.
As a matter of fact, Ibrance has worked its way out of a job temporarily. Seems my onc talked to Pfizer and they said to lay off during radiation so I’m taking a 5-7 week sabbatical from the Ibrance Dance. They feared it would be too much on the immune system. In the two weeks I have been off, it’s is amazing how much better I feel but am scared witless without my security blanket in a pill. So, better to have than have not is what I say.
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Meadows4, and anyone else...I am so sorry to have not logged onto this site for many months after posting my good news w/ Ibrance treatment...in summary, my point from my earlier post is that I started Ibrance/letrezole after rads for one tumor on spine, THEN saw widespread bone mets several months later, but decided to stay the course -- i.e. not ditch Ibrance -- because I had had my ovaries out in the meantime and wanted to give the Ibrance more of a chance to work. I am now more that 2 years out from that decision, and so far, so great, ie. bone mets under control, no spread, in fact improvement. So it was a great decision to stick w/ Ibrance in spite of early spread. Might not work for everyone, and message me for any specifics....BUT, shortly after I posted, Meadows4 asked for confirmation/clarification...here it is: 4/15 started Ibrance/letrezole. 6o r 7/15, scans pretty clear, i.e mostly just the one vertebra that had been radiated. 10/15 oopherectormy 12/15, scans showed widespread bone mets. Decided to stay the course, and as of last scans in 9/17, bone mets still present, but stable to improved, i.e. "indolent", not very "hot", medically FDG uptake on PET < 2.0. I have scans again tomorrow, and hope for the same. So, in a nutshell, my advice is not to be too eager to jump ship off Ibrance, it might just take a bit of time to fully kick in. Best to everyone...
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NettaGER, with regards to your question about the difference between Femara and Faslodex, Femara blocks production of estrogen whereas Faslodex destroys the estrogen receptor on the cancer cell so that the hormone can no longer bind to the cancer. Both work by reducing the availability of estrogen to feed the cancer but they have quite different actions.
I must admit that I am not 100% certain why another one works after you fail the first but suspect it has to do with the availability of estrogen in your body. I failed Arimidex (originally with Ibrance but then alone as my red blood cells tanked on the Ibrance) the sister to Femara, but my MO has just put me on Faslodex and I am hopeful that I will respond well. I have to wonder how much estrogen my body is actually producing as I was put into menopause by chemo in 2001 and I am quite thin so not much estrogen produced in my fat cells. Of course, tumours can produce their own estrogen under some circumstances.
All this to say that I don’t see any reason that they couldn’t switch to a Faslodex/Ibrance combo, particularly if you failed quickly with Femara. Perhaps some of the others can weigh in if I’ve missed something. My MO entertained the thought of adding Ibrance back in but ultimately decided my anemia was too severe.
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Sadie- femara competes with estrogen for binding to the estrogen receptor (ER) and the ER without estrogen cannot turn on cell growth genes. However some times in progression the ER has become mutated, so that it is in a permanently active state, and turns on growth genes whether or not estrogen is present. In that situation, femara no longer works, because the mutant ER doesn't need to bind estrogen anymore- at that point they can move to faslodex to degrade the (normal or mutant) estrogen receptors, so they can't turn on genes. Eventually, other pathways get activated and the growth of the cancer is no longer driven by the estrogen receptor, and you go off of anti-hormonals altogether. If the ER has not mutated, then femara and faslodex can be used interchangeably, as just different ways to turn off the ER.
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Hello again, I've been off the forum for awhile, reading a bit but not posting. It seems better for my disposition not to dwell too much on cancer if that's possible. Also, I wanted to tell you that I have been on a break from Ibrance since August 1st. I'd had a fainting episode then so my onc said to go off for awhile so that I could also feel better for a trip to Italy. It's amazing how much better I feel just being on letrozole alone and so far my cancer is stable. Since my original cancer was in 1991 and didn't return until the end of 2015, he believes it is very slow growing and while the Ibrance knocked it down, the letrozole can keep it there for sometime. As he said, letrozole is a very powerful drug on its own for ER+ women so that's all I'm on right now and praying it stays that way for a little long time.
My MO also told me that before Ibrance, many women like me were just given letrozole. So for those of you worried about taking a break, try not to worry too much as letrozole can really help.
Edited to add, I was in the middle of rd #20 of 125 mg when I went off of Ibrance. I wonder if I had been on a lesser dose if I would have felt much better and not fainted. If that's the case, I would probably still be on it. Who knows?
I have been trying to read and catch up on all the new people here and I just want to say while I'm sorry you have to join us, welcome to a very supportive, smart and caring group of women and a few men. -:)
I'm also keeping all of you in my daily prayers. Hang in there and believe that you can live a long time with this awful disease. We are very fortunate to be living in this age of new discoveries right now.
Love and prayers for everyone,
Faith (in the future)
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Thanks Cure-ious. Just one question, my understanding is that Aromatase Inhibitors work to inhibit the production of Estrogen. Faslodex destroys the receptor and Tamoxifen selectively binds to the receptor. Correct?
Pat.
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Here's the article about Keytruda's approval for a variety of cancers. I don't know why anyone with MBC couldn't ask to have their past biopsies tested for the PD-L1 biomarker. First one here to get Keytruda wins a prize!!
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Hi All,
I just want to drop a line to say Thank You to all you ladies. I just started the Ibrance/letrozole combo as of yesterday. So far so good! I am still standing with no noticeable side effects (yet). Thank you for all your comments to help calm my fears about living a life with this disease. I am inspired by your wisdom and strength to fight the illness. My spirit has been uplifted by your courage to thrive. I am often blinded by the fears and uncertainties that this disease brings, but I once read that "suffering through your fears and anxieties is what allows you to build courage and perseverance". Despite all the turmoil that the cancer has brought to my life, I already cherish the lessons that I have learnt from it.
I am grateful to be among the group of you to share this experience with. I know I will continue to look upon you all for support and guidance. I pray that we will enjoy our journey of life in the most meaningful way for many many more years to come.
Thereishope4us
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Dear Ibrance sisters taking XGeva - I cannot find the right place in the signature thing to put XGeva, also is there a thread for XGeva that you are participating in ? thanks:)
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Faith! Welcome back! I missed reading your stories (and byline) You must have a rather lazy cancer, for it to have been in your body all of these years before coming back. It is a powerful reminder that none of us know if Ibrance is even doing anything for our particular cancer subtypes, since there are no markers in the blood or anything specific they can monitor to follow it, and similarly, when we progress, we don't know if the cancer has grown resistant to faslodex or to the faslodex-ibrance combination..
Sadie- You got it right! You reminded me that for normal women, taking soy is great because the phytoestrogens bind weakly to the estrogen receptor and don't do too much other than competing for estrogen- so for them, soy is acting to dampen the effective amount of estrogen in their bodies. For us, its the opposite, soy and phytoestrogens from our food bind to the estrogen receptor, but because we are estrogen-depleted, the weak ability they have to activate or stimulate the estrogen signaling pathway works against the goals of our therapies. But its not a big effect, main message is dont take large quantities of supplemental soy tablets or other estrogenic like compounds, because we are such estrogen deserts after AI treatment, ovarian suppression, etc, our cells will happily take whatever they can find and try to use it like estrogen.
Pat- I am very excited by your comments, and will ask my MO at next appointment if I can just try adding Keytruda. It's too bad that we have to measure PDL-1 expression, because for many breast cancers it is low, and its not a good predictor as to whether the immunotherapy will help in the first place. It may be a good biomarker when testing Keytruda alone (as monotherapy) but what we want is to add it to existing regimens- in those cases, it may work to help beat back cancers even despite low PDL-1 levels. But still, I'm eager to ask about it and reading your posts with great interest!
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And we are grateful to have your voice among us, thereishope! Good luck with the Ibrance. I'm betting that you'll be happily surprised by the dearth of SE.
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Z - I just wanted to let you know that I am thinking of you and praying that all goes well.
Lita - Same for you too!
I am stepping back for awhile. We have a family crisis happening and I am reeling from Kandys passing! Everyone here will be in my thoughts and prayers everyday!
Claudia
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Hello everyone
My
Mother has bones mets the last 4 years. Was on xeloda and xgiva for 2 years, run out of gas and the last 8 months on Ibrance but really problematic with RBC and hemoglobine.
What comes after Ibrance ? I’ve heard about verzenio but hasn’t been approved to Europe yet.
Any suggestions please ?? I am really puzzled atm
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My wife has now done two cycles of ibrance along with the supplement lactoferrin. She has been on Ibrance plus letrozole since last spring. She is on Ibrance at 75mg as she couldn't keep up sufficient blood counts at the higher dosages. The Lactoferrin she started on two months ago certainly hasn't done any harm. I can't say her counts are much better, nor can I say with any certainty at all as to the effect of the lactoferrin, but she got a good drop in both tumor markers after the first cycle using 250 mg of lactoferrin, so we doubled the dose of lactoferrin to 250mg twice a day, and she got her biggest drop yet in tumour markers. Could be solely due to the Ibrance, and pure coincidence that we added in the lactoferrin. Just wanted to share this though, as I wrote about bovine lactoferrin back in December.
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hi Husband11,
I am glad that your wife can take this dose without any complications.
Why you think that lactoferin helps her to get the high dose? I read online but it doesn’t say anything about RBC or WB
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Any other suggestions to what to do to either enhance RBC or where to move after ibrance (xeloda not an option
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thria, my wife is on Ibrance at 75mg daily. The only thing we played around with the dosage was Lactoferrin. It holds some theoretical promise of increasing blood counts and enhancing treatment. Can't say if it did, but her treatment seems to be working more effectively for some reason. Could just be coincidence.
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Cure-ious, thanks for the welcome back. And thank you also for all the knowledge you bring to this forum. You seem to be a wealth of information and I know you are helping so many women here as are so many others who also contribute. I will probably read this forum from time to time but not sure I have much to contribute since I've been off Ibrance for almost six months now. I will keep posting about any changes in my health and any new treatment I might start. Also, it really is hard to read so much sad news about Kandy and Lynne passing from this terrible disease and others who are so sick. I just want to stick my head in the sand sometimes.
I have been dealing with an erratic heart rate probably from my cardiomyopathy which I believe is a result of the Chemo 25 years ago although some cardiologists disagree with that. So, right now, I'm going through some tests to see what's causing it as well as my high blood pressure even with BP meds. I'm old at 77 but not overweight and I've exercised fairly regularly throughout my life even while going through chemo. I guess there are no free rides in this game of life.
Love and prayers for everyone and for an end to this awful disease.
Faith (in the future).
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Faith, please stay with us. It's not Ibrance that ties us together but all the prayers we've spoken for each other and the middle-of-the-night messages. I was away for a while and I hadn't heard we had lost some of our friends. What were Kandy and Lynne's screen names? I'm so sorry you are sad and I understand how news of a friend's death can make you feel so vulnerable. I spent the better part of two decades operating a cancer support center (Flying Colors in Memphis) and I lost many friends with all kinds of cancer. It was hard and sometimes I would contemplate stepping away from meeting more people and experiencing even more loss. Each time I thought I'd do that, I would ask myself how it would have been to miss those loving friendships. That always settled it for me. Please stay and be the same encouraging voice you've always been for me and others here. Whatever you do, know that you are loved and that prayers go up for you every day.
Another thought, Faith > maybe Ibrance really is still working for you! Who knows how long it can keep doing its work after daily doses stop? Have you considered Verzenio?
I'm sending love to you and all our friends here! Imagine what new treatments might have been approved by this time next year. And I'm really looking forward to the results of the MD Anderson trial for 25mg Ibrance!!
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amarantha: I am sorry this is going on with yours but I hope you pop in and I loved your review (even in french cause I know how to speak and read french).
Cure-ious: Thank you I try! I am a huge speaker for younger women to listen to their bodies especially girls in their 30's and mid 20's. I know a lot of girls a lot who I worked with and saw how and what I went through 4 years ago. The Xgevia we couldn't do in my stomach because at the time we were doing the Zoladex and I don't have much space/room on my stomach because of the diep flap reconstruction I had 3 years ago. Plus they (the lab girls and my oncologist) felt it would still be painful. Yes, my dr is the assistant professor at Vanderbilt University for breast cancer studies. She told me studying with breast cancer is her life and passion. She is the one who is very hopeful on the Ibrance but she also knows it is only temporary when it eventually fails she is optimistic but realistic which is good. I have had her for 3 years (will be in July) but she's great.
Leap: glad you are back hope to hear from you soon. Had been hoping you were okay. Hope your scans go well!
So, I had my follow up. Labs were good and starting round 4 on Monday of Ibrance. I am zometa infusions instead of the Xgevia and well I can say this has been good but also bad. The fatigue is bad and the bone pain is horrible especially for me but yeah. I go for my second bone scan next month. Still dealing with my long term screwing me around. My oncologist and I discussed about my refills with Letrozole because since I started it I was only getting 14 days and having to refill every 14 days. I asked her if that is how we set it up she was like no and so she resubmitted it giving me a 30 day supply. Luckily I am getting 30 days (talked to my pharmacy to make sure) thank goodness because it was quite annoying. I have been between dealing with all of this and now my job's long term program being ridiculous just yeah I got a lot of phone calls to make on Monday because of paperwork. Ugh. I did let my oncologist know about the mouth sores and she said it is a very small but another side effect of the ibrance which I figured. She is keeping track of them which is good. That is it from myself. Maybe I will share my story about long term later. Til then.
Chani
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Faith, Please do stay, I don't think you have a thread for Femara/Faslodex-only treatments anyway, and we want to know what works, and also what you found changed when you dropped Ibrance. And Abemaciclib is stronger, and doesn't play as much havoc with the neutrophils, so who knows what treatments you will decide to go on (and off)! Plus, we all need some more faith in the future!!
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Faith, it is wonderful to hear your voice again and see you among us....welcome, my dear! We've missed you!
Patg, at what stage is the the trial at MD Anderson for 25mg Ibrance?
Hugs to all-
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Good morning...
Like Faith, I have been reading the posts on this board but haven't posted much since my failure with Ibrance. I am still on the Taxol treatment, along with X-Geva. I had my 7th round of Taxol this past Thursday. I have treatment once a week for 3 weeks, then I'm off a week. My onco hopes to keep me on this treatment for six months...which will take me into April. Then, I will have scans to see if it's been working and will then move on to some hormonal pill...I think. I feel good and only have a couple days of mild achiness (usually days 3 & 4), so I can't complain. I've been very fortunate. I have absolutely no pain with the X-Geva injection. I get it in my arm..maybe, a tiny bit of stinging but that's it.
I'm so happy when I read the length of time some of you have been on the Ibrance train. Amazing!! Sorry for those who had to jump off, but there are other options that will get us through this journey.
I didn't "know" the girls who passed, but always sad to read about their life ending because of this dreaded disease.
Wishing all of you continued success with Ibrance...!!
Hope
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Just took the last pill of the first cycle last night and I lived through it!!! Yea!!!! Now if my blood counts will just recover! Fingers crossed
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Hello ladies,
Faith, Nonahope, what Patg wrote is more thant true and besides the support, prayers and love which run through each and every messages your experience is very valuable for newcomers like me.
Chani, for mouth sores my oncologist recommended daily mouthbath 2 or 3 times a day with bicarbonate de soude (called baking soda in English according to google)and with me it really helps.
Nonahope I wish taxol will help you as it did for me in the past. And I'm glad to hear you are lucky not to have too many SE.
Today I'm somewhat puzzled (and stressed), so I came here to rely on your knowledge. I've got some fever (started at night), probably viral as we're inthe middle of an epidemia here. My mother (who's living with us) had fever and similar symptoms (cough, running nose/eyes, headache...) the whole week. Doctor told us it was a virus. My oncologist always says I need to go to ER if I'm passed 38*C. But on Ibrance information I found we shouldn't take it in case of infection/fever. As I cannot reach the onc-team during weekend, I phoned ER-dept of my hospital. They couldn't answer the question and only told me to keep an eye on the fever and go there if needed.
So I'm still lost. Should I take Ibrance as normally or skip it today ?
I really don't know what is best.
Thanks
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no nupogen but white blood count is 1.3 it is the platelets that are nose diving every cycle... they lowered the dosage of ibrance to 100 mg but my platelets are still dropping badly. they go down to 70,000 from 120,000. dr is blaming my statin drug on it but the pharmacist says NO not the statin drug it is the ibrance.
I'm getting tired of the arguing with my dr over my cholestrol med and ibrance. I wish she would call the pharmacist at the speciality pharmacy i get the ibrance from.
-goose
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Dear friends, thank you all so much for the welcome back and the encouragement to stay. It does feel like I'm among a loving and supportive group of friends here even though we haven't met. It really is only in a place like this that we can feel understood. Unless you are living it, you really can't understand all our fears at every twinge. My DH is loving and supportive but there is so much I don't tell him because I hate for him to worry needlessly as it usually turns out to be nothing.
The two ladies I mentioned who just passed away were active on the bone mets thread where I sometimes lurk to check on old friends from this Ibrance thread. Lynne's screen name was I believe LindaE54, and her avatar was a sweet puppy and Wendy just used her own name and picture. I was never in contact with them but felt I knew them from watching their journeys. It's just always sad to lose so many wonderful women to this dread disease. PatG, you are right though about missing loving friendships even though there is pain when they die. It has happened to me too and while I still miss a very dear friend who died months ago from a different cancer, I am so much better for having known her. Nonahope, I'm praying that taxol knocks those mets back and keeps the SE's to a minimum. Looks like we should both still hang out here.
Yaelle, welcome though I'm so sorry you had to join this sorority no one wants to join. This is probably too late to help you today because of the time difference but when I had occasional days of not feeling well, I would skip the Ibrance and my MO never seemed too concerned and in my case it certainly didn't hurt as my cancer seems to be still stable. There were also times when I would delay starting a round in order to feel better for a vacation or very special occasion. It wasn't often but I think others here have also taken a day or two off when necessary.
As for the difference being off Ibrance makes, it's like night and day. I didn't realize how exhausted I felt all the time until I wasn't anymore, even though my blood counts were never low enough to need a break. I actually feel like cooking now and am starting to declutter a bit. On the Ibrance, I just kept pushing through the days with no real enthusiasm for anything. It did take me a long time to feel a lot better though. I believe it was three months before I felt near normal. I do notice the side effects from the letrozole more as before I was never sure what caused what. I was always cold before and while I'm still cold a lot of the time, it's not as bad and now I notice the hot flashes. I also have muscle aches which seems to be helped by turmeric so I can recommend that as a supplement if you're not already taking it. It's also a cancer fighter, just be sure to find a good one that you can absorb easily.
Well ladies, that's enough for tonight. Just keep praying and believing you will be well and I'll be praying for all of you everyday.
Faith (in the future).
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Faith, I love peer pressure.....We're keeping you here! I know you must feel remarkably better after 3 months off Ibrance. After 6 weeks I'm feeling creative again, with ideas for art pieces crowding into my head and one even in the works! I'm also a believer in the Turmeric and order it from Amazon....Megafood brand. Sometimes Whole Foods has it at Buy One, Get One Free but I don't get out a lot so I usually do Amazon.
I was tempted to take 6 months off Ibrance, then scan to see if the remarkable results I had are lasting. My oncologist and I agreed to try the 75mg so I'm doing that, hoping to have the great SE results of friends here. I often think of my friends on Gleevec who took the pills for years and years and did well. Last year a study was completed proving that at least half of those on the drug could stop taking it and maintain NED! Why could that not end up being true for Ibrance Dancers? I believe!! I just took the first 75mg capsule tonight....Here we go!! Maybe I'll be doing the Ibrance Dance with a little more wiggle this time?!
Re: the trial of Ibrance at 25mg > I hope I have that right. Months ago, I posted the info here from Oncology Business Review. One-fifth the regular dose of Ibrance plus a drug designed to keep the cells from finding a way around it. I warn that my memory ain't what she used to be so check it out at MD Anderson.
Yaelle, like Faith I skipped a dose now and then. It was accidental a couple of times and once, with the doctor's permission I delayed starting Ibrance for a week (maybe two) so I could speak at a Komen Survivor Luncheon. I had been fatigued and nauseated and didn't think that made for a pretty picture on the podium at that pink party!! Also I had a serious infection recently (pneumonia) and stayed off for weeks with the doc's permission. I wish you the best as you relax into this and pray it's doing its good work on those cancer cells.
Love to all of you from PatG
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