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When to stop taking Ibrance? Been Taking for Almost 4 years

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txd
txd Member Posts: 3

Hello everyone,

Trying to see if there are fellow people in the same boat as my mother. She was diagnosed with Stage IV breast cancer March 2017 (almost 4 years ago) when they found a tumor in her bones (metastasis). Since 2017, she's been taking Ibrance. In the first year, her tumor markers 15-3 and 27-29 fluctuated a lot until after she did radiation for her bone met. After that, her marker level has been more or less the same for about 3 years: 37 for 15-3 and 45 for 27-29.

Is it possible to eventually stop taking Ibrance? Is there anybody in the community who has reached a point where their oncologist says it's okay to stop? I understand it's Stage IV and likely the answer is no. The tumor is in her blood so likely she might not be able to stop taking the medication. Wondering if there are people who has also been taking this medication for many years and are in the same boat of wondering what's next. Thank you so much!

-Tina

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  • micmel
    micmel Member Posts: 9,910
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    I’ve been taking ibrance for 48 cycles.
    I have always been told that is the medicine I will always be on , as long as it continues to work. As long as she’s stable
    On this medication they will keep her on it. I wish her luck with this medicine. It’s been a life saver for me. Good luck.
  • txd
    txd Member Posts: 3
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    Micmel thank you for your input! Can I ask what your average tumor marker levels are? (but It's okay if you don't want to share I totally understand).

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Hi txd,

    I was only on Ibrance for a short time due to severe anemia but wanted to comment on your question about tumour markers. You really can't make comparisons between people. For some, their markers fluctuate widely when they are progressing going into the hundreds or thousands while for others, they are not sensitive or the changes are more subtle. I am in the latter category. My CA 15-3 had been sitting at 37 for quite some time although I suspected progression was beginning (and I have extensive bone mets and pleural involvement). Now it has spread to my liver and it took a jump... to.. 45. Not exactly definitive but pointing to changes.

    It's really hard to compare with others. It’s best to look at one’s individual trends. Those numbers sound like stable so the Ibrance is probably still doing what it should.

  • tangandchris
    tangandchris Member Posts: 934
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    My understanding is that as long as treatment is working we will stay on it. There is no point that we are told, okay no treatment anymore.

    Of course I was only diagnosed a few months okay, so I am still learning about metastic disease and treatment.

    Also on tumor markers. I was tested back in 2013 and now as metastatic. Each time I've been in the normal range, so mine are not even looked at.

    You are a great daughter for learning about your mom's disease.

  • spookiesmom
    spookiesmom Member Posts: 8,176
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    After my reoccurrence I asked my MO how long I would stay on Ibrance. He sort of growled at me, you know you’re stage 4. I’ve since learned I’ll stay on it until it stops working for me. Then on to something else. Hopefully that’s a long time.

    I was on 125mg for about a year then dropped to 100 mg. That happens a lot, and if necessary I could drop to 75 mg. Don’t be alarmed if that happens, it’s normal and common.

  • candy-678
    candy-678 Member Posts: 4,098
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    I am on cycle 38, so over 3 years. I too have wondered if there is a limit to how long you can stay on Ibrance. I know I will probably progress at some point and then on to another treatment, that is the way with MBC. But, how about those outliers that go YEARS stable. Is there a limit to how long you can use Ibrance??? I don't know. And I think a good question to ask your MO.

  • micmel
    micmel Member Posts: 9,910
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    My markers average 22-26 ranges.

  • sondraf
    sondraf Member Posts: 1,597
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    Well - I can think of one or two rare instances where ladies who had been stable for some time took a treatment break, although if it was Ibrance or not I cant remember. Tina2 comes to mind - she was what, 18 months off as a break? But something like that is very MO and individual specific.

  • divinemrsm
    divinemrsm Member Posts: 6,074
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    The first time Ibrance became available for mbc treatment was in 2015. It was a phase 3 trial. It had such good results, it was fast-tracked for FDA approval. I have read accounts from other women who were in that phase 3 trial who say they are still taking it because they remain progression-free. As to how many women that represents, it is probably not known.

    But, txd, there is an Ibrance thread on this forum and many of the women there have been taking Ibrance for quite some time. You can visit the thread and inquire as to their longevity with the drug.

    So this is a rather new medicine. I’ve been living with mbc for over 10 years now, and Ibrance was not on the market when I was diagnosed from the start with mbc. My first treatment consisted of chemo, a lumpectomy and then radiation and after all that, I had a long stretch of stability on Arimidex, which is an anti-estrogen inhibitor. When that stopped working, I went on a different AI and Ibrance. Ibrance did not work for me.

    But for those who do well on it, don’t fix what ain’t broke. Appreciate all the stability that Ibrance gives you. I would say there is no end point for taking it if it continues to keep you progression-free.


  • buttonsmachine
    buttonsmachine Member Posts: 339
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    My MO has patients who have been on it since the clinical trial days - so going on 5 or 6 years now - and they continue to do well. If Ibrance is still working for your mother and she is tolerating it okay, I think you're in a good place overall. I don't think I would want to change anything if I were in her shoes, because there is always the risk of things getting worse.

  • tina2
    tina2 Member Posts: 757
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    SondraF,

    Yes, you're right, but it wasn't Ibrance. I took a long break from Faslodex after I had been on it for many years. Eventually scans showed that my lung mets were growing, so I went back on Faslodex and started Ibrance, I turned out to be one of those rare birds to have a horrible reaction and was sick for months, very short of breath, coughing, sleeping a lot and feeling generally awful. My oncologist did not seem concerned when I complained and did not offer to reduce my dose until I documented my symptoms for a month and read him some of the descriptions. Wonky blood tests and new lung issues proved I was having trouble even on 100mg, so I came off Ibrance entirely in September.

    Happily, Faslodex continues to be my friend!

    Tina