Ibrance (Palbociclib)
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Ladies: I have been taken off Ibrance after 2.5 years. My tumor markers have skyrocked so my oncologist has put me on chemo (first time in 7 years). Anyone have this experience and what has the success been/timing (on taxotere). I am stunned - tumor marker was 806 last week, 589 the week before. The first of this year the tumor markers was around 60.
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Be careful. First MO said it would be easier on me than a/c. Had severe allergic reaction to it.
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Wandering, let's think of this as a break from Ibrance. You'll be back!
I had 6 cycles of Taxol/Carboplatin when I was first metastatic in 2012. Half the tumor was gone at 3 cycles and I was NED after 6. I took Femara as maintenance but stopped it due to side effects after about 16 months. For a few years I decided not to do anything.....no meds and no scans. Had some discomfort in my leg and found bone mets on PET/CT. Then started the Ibrance Dance! (Leg discomfort turned out to be arthritis.....Go figure!)
If you haven't already, you might consider getting one of the circulating tumor tests to see what they recommend. I'd contact Cure-ious and delve into her vast knowledge before I took chemo. Pray about all the options and you'll know what to do!
I'll be the Memphis link in your prayer chain!
Love from PatGMc
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Thanks for the reply. My dear baby brother lives in Memphis - works for the Department of Justice (a computer geek at trials).
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Wandering, I am sorry to hear this! I agree with Pat and would see if you can have a liquid biopsy or Foundation One test (I think that is what it is called?). Cure-ious and perhaps others will be able to advise on the test name. Let us know how you are doing, ok?
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A new way to classify MBCs was proposed a few years ago, where basically ten different subtypes, or "clusters" were identified, based on gene expression and in several cases because the cancers shared the amplification of the same region of some chromosome. One bin has most of the HER2-amplified cancers, for example, but not all of them, because some HER2 cancers are more similar, molecularly, to cancers in a different group.These classifications have been used to better determine recurrence risks and predict responses to treatments.
Here are some links that describe the classification system.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC35909...
https://www.nature.com/articles/s41523-018-0056-8
Following up on a discussion in Clinical trials thread, a paper appeared in Nature last week showing that a PLK4 inhibitor drug was especially effective for the MBC subtype that constitutes the first of these bins, called IntClust1, which has many (but not all) of the ER+PR-HER2 luminal B cancers, and represents about 8-9% of all MBC cases. Interestingly, a trial is ongoing with a PLK4 inhibitor in Canada, but it is targeted to TNBC, Hopefully a trial will start up soon to test PLK4 inhibitors for luminal B ER-positive cancers in IntClust1. Interestingly, Dennis Slamon at UCLA is one of the investigators on that trial- Slamon was the guy who did the first trials on Herceptin for HER2-positive cancers and then followed that up by doing the first Ibrance trial- he just won the Lasker award last fall (many of those winners go on to get a Nobel prize); so if Slamon has anything to do with PLK4 inhibitors, there may be a real chance that they will end up in the clinic.
https://www.genengnews.com/news/targeting-breast-c...
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Wandering: Thinking of you today. Hope you find good answers for going forward. I may be in a similar situation to yours. I go in this morning for Lab, CT scan and an echo on my heart since I'm also on Herceptin. I've been in Ibranel for 3 years and my primary tumor feels weird . I've been on Faslodex for two months after letrozole was dropped. My tumor markers have crept up too. I see MO on Wednesday so will have to see what she recommends.. Hanging in there with you.
Ppl loop
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elena401: Thanks for the encouragement. I'm home today but appointments with oral surgeon tomorrow and oncologist Wednesday (blood work and chemo). The only good news is I get to eat a 4 ounce cup of chocolate ice cream while doing chemo and read a book on my new iPhone. Several of the nurses visit with me while I'm getting my chemo which takes my mind off the "drips". My oncologist has some really wonderful gals working for him. There is a great group of volunteers who help out in the clinic who are now back (been gone during the "pandemic") which really helps take the load off the nurses - mundane stuff like serving lunch, cleaning up, etc.
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Wandering, Wow to having TMs so high and nothing show up from the scan- assuming chemo takes them down, where can they be coming from? From Penny's case, we know there can be these infiltrating mets that aren't visible on scans, but those are rare.. For the oral surgery, when can they get started? You have to recover from the chemo first, surely..
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Just wanted to thank Harry for letting us us know the very sad news about Penny. Sometimes folk just disappear and we don’t know what’s happened, so if you are still checking in here Harry we appreciate your thought and, as many others have said, our thoughts are with you and your family.
Karen.
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Cure-ious: I'm meeting the oral surgeon tomorrow. My oncologist does not want me to get the surgery until my cancer is "under control". The original schedule was during my chemo week off which would be next week but with the tumor markers so high I don't think that will happen. Right now the jaw is not hurting me - I can open it wide enough to eat and brush my teeth. The guy I'm meeting with tomorrow can only do a stop gap with the jaw - not the fix which would be the bone graft surgery which will happen away from home at least 500 miles. The ultimate problem with the jaw is if it actually breaks. Lots of people have had that happen and survive. If mine breaks it would be because the jaw bone has deteriorated to the point that it breaks not because of an accident which is what usually happens. I know two people who broken their jaws from accidents - not pleasant but they have recovered. The cancer concerns me the most - am I running out of options?
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I-beat-it - Lymphedema really sucks and from what I've read, it seems like it can strike years after treatment. No cure (maybe surgery?), ony managed. I am in round three of BC, twice left, and now right axilla. After clot ruled out, I was sent back to oncologist. After scans and biopsies, the ugly Dx. Lymphedema probably caused by new cancer rather than treatments for first two episodes, but who knows. Wear compression sleeve and glove, and now have a pump, do not see therapist regularly anymore. Looking for a tape so I can self measure, I find just looking at arm is unreliable.
2009 - Left, lumpy dense, right normal. Lumpectomy, 6 rounds radiation, tamoxifen 5 years
2016 - Left again. Chemo, Bilateral (my choice), no reconstruction, Chemo did not have much effect on tumor. Initially generic AI, immediate joint effects. Took a short break, then tamoxifen.
2019 - Right Axilla. Ibrance and Arimidex. Tumor shrinking a little, I think. Confusing because images might be measured and interpreted differently by different radiologist.
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GoldenRSBest - I am also on Ibrance/Arimidex, just started cycle 13. Cycle 10 switched from capsule to tablet. Cycle 12 drop from 125 mg to 100 mg. Fatigue was really bad first 3 cycles, got better with time.. Initially hard to get up in AM, found excuses not to do more exercise. Do not have so much fatigue in mornings, and it does not usually strike during day. Blood counts were up after dose dropped, but still low. Hang in there.
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Hairloss - my oncologist says it is most likely the Arimidex rather than Ibrance. Hair never really recovered after chemo in 2016. I did DYI Coldcapping. Oncologist and surgeon were impressed how much I still had ( I was their first patient to try it), but I was disappointed how much I lost (maybe 60%). I think biotin is helping with nails, but not so much for hair.
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Wandering - My CA 15-3 skyrocketed to 1386 before I started Ibrance (and clear scans). It started dropping before Ibrance and is now 141. I hope your new treatment works so you can have your surgery.
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Bluegirl thanks for sharing your experience. 🙏
9-12 I am happy you received care from your brother, I hope air quality gets better and breathable soon.
I had a weird and stressful morning, my insurance company instead of approving second opinion request, they called my current (now former) MO to transfer me to the other oncologist in the same clinic! Then they admitted it was a mistake and misunderstanding!!! The insurance company once a while contacts me regarding my health improvements, I had 2 major progressions over last 6 months, but they never asked me any assessments about oncologists. Now my MO doesn’t think it is a good idea to continue with me, as his nurse messaged me, it was a rude message, she all the time is rude to me... how come I even did not permit my proxy to make a decision for me. Still whole my body is shaking. Few months ago the MO told me that he wanted to see me every 3 months instead of monthly, I must say that our longest meeting was about 5 minutes, couple months ago his nurse refused to transfer my request to the MO because she said Dr.... had other 15 patients to see that day (it was 1pm)...I am upset and stressed about whole things, it is not fair, and not good approach to get rid off a patient when they are too busy with too many other patients, sometimes people are too weak to own their own mistakes. Maybe it is best that can happen to me, maybe new MO can provide better care for me? As long as I shouldn’t deal with his big B nurse, I am happy. Anyway, I will zoom new MO in 2 weeks. Pet scan canceled as I am not feeling well.
Candy and Sondra, I asked a question about how long we need to get zoladex injections, from a well experienced nurse in infusion clinic. she took my blood test smoothly, I liked that. She said even after reaching menopausal phase, it is suggested to still get zoladex for few years, during those years the injections will be given quarterly instead of monthly, other option is surgical removal the organs.
wish everyone best.
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I-beat-it--- So sorry you had that experience with your insurance/ former MO. So... your insurance made the decision for you concerning your new MO???? And a doc in the same clinic??? I do not understand. I chose my new MO, not my insurance. (Of course, I had to make sure my new MO was in my insurance plan) And, I wouldn't think that seeing a new MO in the same office as old MO would be good--- same staff, awkward. And will the old MO be covering the new MO during vacations, etc so you may be forced into seeing the old MO again at some point.
Concerning Zoladex, or in my case Lupron, I will have to ask my new MO about how long to continue or when I may be thru menopause. But she did already ask me if I thought about having surgical removal of ovaries---- No not right now with Covid situation (hospital stay) and also my low white counts (infection risk with surgery).
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I beat it, sounds like you had a terrible morning. Maybe it's in your best interest to find another MO. It doesn't sound like they were taking good care of you.
Sending you hugs, I hope your day gets better.
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Wandering, well its the TMs that are out of control, the cancer is OK by scans so hopefully it (mostly) is in control, and don't worry about options- one emergency at a time!! The jaw is very scary, get to it as soon as possible, It's great that they are doing a stopgap measure to try to protect it in the meantime.
I assume the chemo will cause the TMs to drop right away, and hopefully you can shortly get the jaw safely fixed. The break in regimens may even help reset the cancer so that it responds again to the I/F combo.
And definitely you are not running out of options! Many clinical trials actually require I/F plus one chemo in the metastatic setting, so you have done that. You can go back onto I/F or Faslodex-Verzenio while you consider clinical trials. You just are overwhelmed with issues right now so, baby steps... Remember to breathe..
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I was dx January 2017 with Mbc to the l4 vertebrae. My tm was 50. Started arimidex and last Oct 2018 was 30 within normal range. In July 2019 tms increased to 42. Was scheduled for an annual ct/pet scan and no activity seen. The tms have slowly increased and by June 2020 had risen to 94 Dr ordered another scan and they are seeing a nodule on the lung and spots on T2 and T3. My Doc says if tms go down then it’s not usually cancer. It’s a tool to see if you are responding to treatment. Doc wants me back in November and he’ll check tms again hence I’m drinking more green tea, taking spirulina, spinach plus extra D. He is talking Ibrance and I think the other one was Faslodex So I’ve been checking the invaluable information posted by others on this site. I’d hoped to get longer on arimidex as I’m 70 and helping my son who’s a pilot in the military with two grandkids. Right now I’d like another 4 years but I’m not sure I want to do chemo but one day at a time. A lady called Julie from John Hopkins used to say “learn to live in harmony with your cancer”. My test for tm is Ca 15-30
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Cbbrew- Oh, c'mon, dream BIG!! You got three years on AI alone and haven't even had a CDK4,6 inhibitor yet, is that right? Surely there is every reason to hope for four years, plus many more!! Hopefully they do a test to see if your cancer has developed the ESR1 mutation, because If so, you also could consider going onto the lastofoxifene trial, and be able to kick the faslodex can even further down the road..
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WANDERING: Glad you got enjoy some ice cream. Its good to treat yourself with all you have going on. I appreciate what you said about the nurses where you're treated. The nurses where I go are wonderful , couldn't be any nicer. So are the sweet volunteers who are so good to me but they haven't been around due to the pandemic. I see my ONC Wed too so very nervous after my tests today but anxious to see what she has in mind.
CCBREW: hope you get on a treatment that gets those tumor numbers back down.
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cure-ious, I've been wondering, how come some (true, not early then whoops we found mets later!) de novo ladies get a hit of chemo and then move on to hormone therapies? Do you know the research behind that? Or is it, like the primary removal, dependent (to an extent) on doctor preference/decision-making?
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Cure-ious: Always great encouragement from you which I sincerely appreciate as I am sure do others. Going to see the oral surgeon today. Very nervous about that. Seeing the oncologist tomorrow. I am sure he will be very unhappy about the TM's. The machine was broken last week so maybe it wasn't correctly calibrated (?). I just hope he doesn't put me in the hospital. I hate that place and would much rather be at home. Don't know why he would do that but I don't know. Anyway time to head out to the oral surgeon - ugh.
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I beat it, so your insurance company basically was making medical decisions for you including your doctor and what facility they were out of? Wow, that would leave me shaking too. Unbelievable. I agree with candy, awkward would be the definitive word. I do hope in spite of what happened you get better care with the new MO.
Wandering- hoping new chemo can get things under control and then maybe you'll be back with us again soon
Chocolate ice cream sounds really good now. Hoping for good things for you on your new line.Taking delivery of Ibrance 100mg tomorrow. Hoping the lower dose helps with fatigue. The weather has turned cool so no more lawn mowing which I'm sad about but with the fatigue and the Mobility issues these days, it's best the weather turns cool so at least the temptation to try to mow isn't there.
Here's to a less tired me, hopefully soon!
Love to you ladies!
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Ladies: Met with the oral surgeon today. Nice guy. He thinks he can put in a titanium plate in my jaw once my cancer is under control. The plate is custom made using computerized MRI and CAT scan. Uses a 3-d printer to create the plate. Pretty good technology. The plate is either made In Switzerland or Sweden. He was more positive than I though he would be. I might survive this after all. Probably cannot get this done until December at the earliest which would mean 100 mile round trips to his location in winter but so be it. Thanks for the support and good thoughts - that means a great.
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That's great news Wandering. I hope you next treatment gets your cancer under control quickly.
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Wandering, great news! You'll be our six Million Dollar Woman and maybe you'll speak like The Muppets' Swedish Chef! We'll be pulling for you as you begin a new treatment.
Love from PatGMc
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I-beat-it I am sorry you had that experience with insurance. Last year when Dx'd 3 time with BC I got so frustrated with the Insurance, I used the S-bomb, and almost the F-bomb. I felt bad, because it was not the individual, but the system. I hope it goes better for you in the future. Breath deep, use the broken record technique of repeating your question until answered. I have not had a bad session with my oncologist, but do sometimes feel that she has so many patients, and has to code sessions precisely, that the "me" get lost. One friend told me that her insurance (same as mine) spent a long time trying to convince her to take a much less expensive generic (not for cancer) than the brand name, after her DR and her determined that the brand name was working much better and with far fewer SEs.
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I found an interesting comparison between abemaciclib and palbociclib in an article published in a Japanese cancer journal:
https://academic.oup.com/jjco/article/49/11/993/5607887
AbstractBoth palbociclib and abemaciclib are, oral, highly selective inhibitors of cyclin-dependent kinase 4 and 6, which are proteins involved in cell differentiation and growth. In pivotal phase III trials (PALOMA and MONARCH), they demonstrated a significant improvement in median progression-free survival in combination with a nonsteroidal aromatase inhibitor in the first-line, and with a fulvestrant in the second-line in hormone receptor-positive and HER2-negative metastatic breast cancer, respectively. Both palbociclib and abemaciclib were approved, however, ribociclib, the third cyclin-dependent kinase 4/6 inhibitor, has not been approved in Japan. The overall benefits from palbociclib and abemaciclib seem to be equivalent. Subsets analyses suggest that clinical benefits of palbociclib are associated with bone-only disease at baseline, no measurable disease, sensitive to previous endocrine therapy and longer disease-free interval. In contrast, additional benefits from abemaciclib in combination with nonsteroidal aromatase inhibitor or fulvestrant seem to have a relationship with visceral disease, liver metastasis, primary resistant to endocrine therapy, and short treatment-free interval. Abemaciclib induces senescence and apoptosis more than palbociclib does in a time-dependent manner and has potential to produce tumor shrinkage by single use. Neutropenia is more frequent in palbociclib, in contrast, diarrhea, nausea, and liver dysfunction are frequent in abemaciclib. In this review, we provide an overview of the two kinds of cyclin-dependent kinase 4/6 inhibitor, which were already approved in Japan. These differences might be useful information for the proper use in daily practice.
Conclusion
ABEMA has potential to shrink tumor by the single use. PAL has a tendency to be associated with better clinical benefits in patients with indolent factors, in contrast, ABEMA with virulent factors. Neutropenia is more frequent in PAL, and diarrhea, nausea and liver dysfunction are frequent in ABEMA. These differences might be useful information for the proper use in daily practice.
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