Ibrance (Palbociclib)

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  • chicagoan
    chicagoan Posts: 1,422
    edited December 2025

    @cowgal I have not heard of that. I have been on Ibrance for over 9 years. I may be switching to Orserdu/Kisqali soon due to some progression that was found on an MRI in late August. The progession did not show up on my normal CT/bone scans but was found by an MRI for my hip.

  • brutersmom
    brutersmom Posts: 1,156

    cowgal. I have been on for 3 years and was told I would remain on it for as long as I didn't have evidence of toxicity or progression.

  • I was told that same thing. I've been on it for close to 5 years.

  • per ChatGPT

    Short answer: Iโ€™ve seen very few people taken off Ibrance solely because โ€œitโ€™s been too long.โ€ That rumor pops up every couple of years and then quietly dies when you look for actual evidence.

    Whatโ€™s actually known

    • Ibrance (palbociclib) does not have a defined maximum duration. In metastatic HR+ breast cancer, the rule is brutally simple: stay on it as long as itโ€™s working and tolerable.
    • There are real patients on 7โ€“10+ years of Ibrance. They exist. Theyโ€™re usually boring case reports because boring equals stable disease.
    • Long-term follow-up from PALOMA trials and real-world cohorts has not shown cumulative organ toxicity that forces discontinuation at a set time.


    What can happen over long durations:
    People are sometimes taken off Ibrance after many years, but usually for one of these reasons:

    • Chronic cytopenias that stop recovering even with dose reductions (especially neutropenia or thrombocytopenia)
    • Recurrent infections that become unsafe
    • Quality-of-life erosion someone decides is no longer worth it
    • Very rarely, bone marrow fatigue where counts never bounce back

    Thatโ€™s not โ€œtoxicity from being on it too long.โ€ Thatโ€™s individual tolerance hitting a wall.

    What I have not seen

    • No guideline saying โ€œstop at 5, 6, 9, or 10 yearsโ€
    • No oncology consensus saying long-term CDK4/6 inhibitors are inherently dangerous
    • No data suggesting elective discontinuation while NEAD improves outcomes
  • cowgal
    cowgal Posts: 633

    Thanks everyone for the responses!

  • I will have been taking Ibrance 5 years come next month. I am stable.

    Shirley

  • @cowgal @sunshinedaydream @chicagoan @aimeeeee @brutersmom Ive been MIA. It's been a rough year, with viral, bacterial, fungal and microbial infections thanks to third parties. And yes, the toxicity levels of Ibrance seem to be knocking my Absolute Neutrophils right down but i velieve i had also let my guard down about masking and social distancing when in crowds, so that also worked against me. However, I also have an Oncologist who was completely dismissive of my incessant mentioning sharp pains in my affected breast. LOL!! I think I've been through the wringer this year. And then my dear brother died. At one point I was so low, I felt I wouldn't make it to the end of 2026!!! Which of course could be true of anybody, including people who do NOT have MBC. My head has been really messed up the last 2 months. Im currently on a fluconazole regime, in an effort to get rid of a nasty fungal infection., before reducing my Ibrance.

    @cowgal what youve just shared about someone that's NEAD being taken off Ibrance due to toxicity is confusing. Like you, I imagined that if a treatment is working, then one sticks with it. Which is what I've opted to do unless and until there's evidence of progression. Its a hard knock life, being MBC. We are confronted with very difficult, confusing options.

  • chicagoan
    chicagoan Posts: 1,422

    @Rosebessie Sorry you have had such a tough year. Prayers that 2026 will be a year of peace and good health.

  • cowgal
    cowgal Posts: 633

    Rosebessie - Praying that you have a much happier and better 2026.

  • Thanks a lot @cowgal and @chicagoan . I really need a break. Love and hugs ๐Ÿซ‚ ๐Ÿค— โค๏ธ

  • sending everyone here a Happy New Year wish for good health and lots of love!

  • brutersmom
    brutersmom Posts: 1,156

    Rosebessie what a rough time. I hope everything is uphill from here and 2026 is a much better year.

  • brutersmom
    brutersmom Posts: 1,156

    My mets returned in November 2021 but weren't confirmed until January 3rd 2022. Tonight I decided to put my diagnosis, the results of my Guardant360, and the fact that I was NED into Chatgpt. Unlike google, the results were positive. I got a good explanation of Guardant360 as it relates to my diagnosis. Most of the time I feel like because I had a metastatic pleural effusion as a primary mets I get gloom and doom. Not the case this time with chatgpt. Definitely not cured but AI offered positive explanations put everything together.

  • @brutersmom thank you. I also pray 2026 brings positive developments. I'm happy ChatGPT gave you such encouraging feedback. ๐Ÿ‘Œ๐Ÿ’•

    Wishing every a good crossover to 2026. Love and hugs

  • I just had my 21st Anniversary and 4th Anniversary of Stage 4. Am still around. Have almost lost count of Faslodex and Ibrance. It is @ 52 cycles . So stay strong, there is hope