Verzenio vs Ibrance

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Whyus2018
Whyus2018 Member Posts: 4
edited November 2019 in Stage IV/Metastatic Breast Cancer ONLY

I was wondering if there are any newly diagnosed on Verzenio and Letrozole. I see a lot on Ibrance but no one on Verzenio. Am I alone? I have my first scan in two weeks and see many having success on Ibrance.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2018

    Does this help? https://community.breastcancer.org/forum/8/topics/...

    Amy

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  • Greeneyedgirl72
    Greeneyedgirl72 Member Posts: 2
    edited October 2018

    My mother is newly diagnosed HR+/HER2-ILC colon(yes, really) METS and had enrolled in a trial for letrozole and verzenio + a study drug (its a PI3K for the lab-savvy among us) and I'd been following this thread hoping to find others on the letro/verzenio combo at some point. The research team says they're getting good results, which is great. Mom has had a terrible time with the Verzenio, though, which has been disheartening. She got upside down with the diarrhea (and nausea later) right away and never could get ahead of it with Immodium (we never figured out the right system/timing), so after 10 days on that med combo, she ended up in the hospital for nine days with kidney failure from severe dehydration. On the 4th day she was doing much better, was to be discharged the next day, but instead her BP bottomed out after a big BM and heart rate shot up to 190, followed by atrial fib that had to be corrected after four more days via cardioversion. Oh, and they found a big clot in her leg right before that procedure. Sooooooo.......now she's home and doing much better, but very concerned about treatment. She's been back on the letrozole for several days but after one day back on Verzenio at a reduced dose (50 down from 150) the diarrhea unnerved her (preserving her electrolyte level is high priority) so she is having second thoughts about continuing with the verzenio and the trial. She didnt take any Immodium with it at all, and I reminded her a lower dose could be more tolerable/manageable, but didnt mean the diarrhea would go away. The other complicating factor here is a small section of her colon that has narrowed d/t METS, so a bit of diarrhea is useful in her case.

    Sorry to be the first response to your drug combo shout-out and have a harrowing story to go with it! Maybe more will find us with the thread bumped and have insight for us both. Don't forget, the research doc told us they ARE seeing good results with letrozole and verzenio, and moreso with this 3rd drug they're studying.

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  • Greeneyedgirl72
    Greeneyedgirl72 Member Posts: 2
    edited October 2018

    My mother is newly diagnosed HR+/HER2-ILC colon(yes, really) METS and had enrolled in a trial for letrozole and verzenio + a study drug (its a PI3K for the lab-savvy among us) and I'd been following this thread hoping to find others on the letro/verzenio combo at some point. The research team says they're getting good results, which is great. Mom has had a terrible time with the Verzenio, though, which has been disheartening. She got upside down with the diarrhea (and nausea later) right away and never could get ahead of it with Immodium (we never figured out the right system/timing), so after 10 days on that med combo, she ended up in the hospital for nine days with kidney failure from severe dehydration. On the 4th day she was doing much better, was to be discharged the next day, but instead her BP bottomed out after a big BM and heart rate shot up to 190, followed by atrial fib that had to be corrected after four more days via cardioversion. Oh, and they found a big clot in her leg right before that procedure. Sooooooo.......now she's home and doing much better, but very concerned about treatment. She's been back on the letrozole for several days but after one day back on Verzenio at a reduced dose (50 down from 150) the diarrhea unnerved her (preserving her electrolyte level is high priority) so she is having second thoughts about continuing with the verzenio and the trial. She didnt take any Immodium with it at all, and I reminded her a lower dose could be more tolerable/manageable, but didnt mean the diarrhea would go away. The other complicating factor here is a small section of her colon that has narrowed d/t METS, so a bit of diarrhea is useful in her case.

    Sorry to be the first response to your drug combo shout-out and have a harrowing story to go with it! Maybe more will find us with the thread bumped and have insight for us both. Don't forget, the research doc told us they ARE seeing good results with letrozole and verzenio, and moreso with this 3rd drug they're studying.

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  • Whyus2018
    Whyus2018 Member Posts: 4
    edited October 2018

    Thanks for the info. I was on Verzenio 150 and had horrible diarrhea and a body rash. MO lowered to 100 mg Still with Letrozole and so far tolerable. I have my first scan in a week to see how it has worked. Still the occasional diarrhea problem but Imodium helps me. I also found drinking tons of water helps.

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  • pajim
    pajim Member Posts: 2,785
    edited October 2018

    I'm six weeks into Verzenio and Faslodex and it seems to be working. Yes you need to eat some, drink a lot and take the Immodium. The problem with Immodium is that it's an appetite suppressant. I take mine just before bedtime. I also changed the goal. Which is to say I'm not aiming for solid stools. I'm aiming for only being in the bathroom once every day (or two) and not worrying about urge diarrhea. That seems to be working fine.

    There are other options besides Immodium. Ask the docs for a stronger med.

    The thing about Ibrance is that it causes neutropenia. (low neutrophils). Whilst it can be easier to deal with than the big D, it has it's own problems. The year I was on it I got a cold every 6 weeks. After a few months that gets really really old.

    All that said, let me pass along the advice I got from my pharmacy about beating the diarrhea with Verzenio. At the first sign of a loose stool, take two Immodium. Then take one every 12 hours. That didn't work for me -- too much Immodium -- but if your Mom is seriously susceptible that might work. Just be wary of the appetite suppressoin.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2019

    It's been two years since I was on Ibrance, but I lost 80 pounds while taking it. I never needed Imodium because I take narcotics for pain which are known to cause serious constipation, so the Ibrance and narcotics sort of evened everything out. I appreciated losing all that weight, except when I got too thin, I was really afraid of wasting away. Ibrance seriously affected my appetite and I had to make a conscious effort to put back on the weight and eat more calories. I'm back to a good weight now.

    Good luck pajim with Verzenio and Faslodex. Verzenio at full strength was awful for me. Non-stop vomiting until my oncologist cut the dosage in half. I took it for a year but it turns out it didn't do a thing for me, except allow progression in my liver and bones. It was not at all helpful. I pray it works for you with manageable side-effects.

    A

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  • Mermaid007
    Mermaid007 Member Posts: 54
    edited November 2019

    Stick with the 50mg which is also the only dose that I can tolerate and then use Imodium the same as Pajim states which is exactly what I do. Hope it works for us all

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