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Experience with Verzenio???

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Hello, I am new here, I was recently diagnosed with Stage 4 breast cancer. all at once, no previous diagnosis, it was missed in previous mammograms.
IN some ways i am so lucky because i didn't have to go through the mastectomy (it would have limited my ability to do my job for months, i would have lost my job for sure)
or the big league chemotherapy, which would also impair my ability to do my job. They said there was no point, really, to go that route, since I am at stage 4 already.
A month ago,
they have started me on Anastrazole 1mg daily, so far so good. I am in high risk for blood clots/strokes. so I am now on aspirin 81 mg daily.
Now, they want to add in Verzenio. This med sounds terrifying, the med arrived with six (6) boxes of Immodium for all the diarrhea. It also can increase blood clots, cause lung and liver problems, pretty scarey list. See, i have never ever been on meds in my life, not really, so this list of disabling side effects is very daunting to me.
We all have our own goals,——————————— and mine is, i have to keep working/paying rent until May of 2024.
They say i have a year for sure, and most likely 2 years for sure,
and 3, 4 or even 5 are possible, maybe more.

But i do not want to spend those years in the bathroom… I have to keep my job. That is my goal, is staying employed and paying the rent. Until summer 2024.
In the summer of 2024, my daughter graduates and then, then i can relax a bit and not worry about not being able to pay the rent, as she will soon enough be on her own with her new degree and new job.
but from Now til summer of 2024, i am afraid of even starting this Verzenio. ANYONE HAVE ANY EXPERIENCE WITH VERZENIO?

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  • aprilgirl1
    aprilgirl1 Member Posts: 787
    edited September 2023
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    Jean,

    Verzenio is in a classification of drugs called CDK 4/6. Ibrance and Kisquali are other drugs in this class. I have been on Ibrance for almost 4 years and also work full time. Ibrance and Kisquali both have a common side effect of low white blood cells but these drugs don't seem to have diarrhea as a common side effect. Verzenio does not seem to impact the White Blood Cells but does have the side effect of diarrhea. Could you switch to Kisquali or Ibrance? I know you already received the Verzenio in the mail so I don't know if that is an option. Not all women get the side effects but I do understand your concern!

    In my case Ibrance has worked really well and I will be 4 years as stage 4 in November.

    There is a discussion thread for Verzenio users that you might find helpful, here is a link:

    Keep us posted.

  • AJ
    AJ Member Posts: 230
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    @wondering44 not everyone gets horrible side effects from Verzenio. And it works really well. My big problem is fatigue. I’m able to manage the GI stuff ok. I just need to make sure that a bathroom is nearby. I take Imodium occasionally. Bloodwork and scans all look good.

  • AJ
    AJ Member Posts: 230
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    @wondering44 yes, check out the Verzenio thread.

  • moderators
    moderators Posts: 8,286
    edited September 2023
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    Thank you, @AJ! @wondering33756, take a look at and join if you want the following two threads relating to your situation: Abemaciclib Verzenio for All Stages, and Abemaciclib Verzenio for Stage IV.

    The Mods

  • seeq
    seeq Member Posts: 1,129
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    @wondering33756 - I've been on Verzenio/anastrozole for 3 years. The fatigue was hard in the beginning, but improved over a few months. I got more energy again when I had a dose reduction to help with GI issues. Not everyone has GI issues, but almost everyone that does can manage well enough with Imodium and our Metamucil. Dose reductions are common (I think that's true of all the CDK 4/6 inhibitors).

  • threetree
    threetree Member Posts: 1,471
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    Wondering33756 - Can't type much these days, due to injuries from a fall (that are improving), but I will add a little here to what's already been said: I've been on Verzenio/fulvestrant since about May, and I too was just as scared as you are - horrible side effect list. Fortunately I have never had the diarrhea and I am tremendously glad for that. I do get some GI symptoms like bad gas pains and cramps, but they are manageable with diet changes, just putting up with some of it, etc. The fatigue is the worst, along with sore muscles and stiffness, but there's not much I can do about it, although I'm planning to ask the palliative care nurse about maybe adding PRN Ritalin for fatigue, next time I see her. I am aware of the other side effect possibilities and watch for things like fever (so far, none), signs of blood clots, etc. If I experienced any of those kinds of symptoms I would get myself to urgent care or the ER right away. I could barely bring myself to take the first pill, especially, but I did, and I'm OK now these several months later. My scans were good after about 4 or 5 months, but the onc wanted to stop after 2.5 mos showed some small progression, even thought other things showed much improvement. I pleaded with her for more time and she agreed to another month only (I would have liked 2), but then those scans were totally clean, she's on maternity leave, and her sub said all was real good for now.

    I also think Verzenio might have some benefits over Ibrance and Kisquali, but not sure. Others have done well on those too, so it could be an individual thing. My onc suggested Ibrance initially, but I asked for Verzenio after having read a lot here.

  • kotchaj
    kotchaj Member Posts: 214
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    Hi there, I'm stage 3C and have been on Verzenio for 19 months. I take the 150 2X/day and have stayed at that dose. I did have issues at first, but take the multi symptom Imodium, 1 pill in the morning, and it takes care of everything for me. It is an adjustment period and I, too, have to work, my husband is retired already and I am younger than him. I've managed to work full time throughout my treatments. I understand about being worried about taking it, make sure you keep up with your water intake. Those are the only times I have issues with it. I at first had fatigue, but managed it by using my one hour lunch to take a quick cat nap.

  • moderators
    moderators Posts: 8,286
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    Hi again @wondering33756 ,

    You may also find these links helpful:

    We hope this helps and are sending good thoughts for an easy experience with Verzenio! Keep us posted with how you're doing.

    —The Mods

  • seeq
    seeq Member Posts: 1,129
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    @threetree - you might try Gas-X or Phazyme (i think both are simethicone?) for the cramping. It really works, and amazingly fast (15 minutes max). I use it by itself sometimes, or to relieve the cramping caused by Imodium. Talk to your MO- mine said it was fine to take.

  • threetree
    threetree Member Posts: 1,471
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    Seeq - Thanks so much for the Gas-X, etc. recommendation. I've wondered about trying that before, but I also get real concerned about loading up on too much of both prescription and OTC stuff. I've also had concerns about simethicone for some reason that I don't even remember now. I have tried the immodium, not for diarrhea, but it does also seem to help with the gas, even though it's not recommended for it. I think I might give the Gas-X a try. I'm going to look at Amazon reviews and comments and see what the general feeling is and probably order some to try. Glad to hear that it works well for you - and so fast. Really appreciate the tip.

  • AJ
    AJ Member Posts: 230
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    Gas x works really well for me.

  • threetree
    threetree Member Posts: 1,471
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    Good to know, AJ, thanks.

  • threetree
    threetree Member Posts: 1,471
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    I ordered some Gas-x from Amazon, and I think it is in a package that arrived today (down in a locker and I probably won't retrieve it for a day or two). Thanks Seeq and AJ.

  • beckymd
    beckymd Member Posts: 27
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    My onc just put me on Verzenio. I am wondering has anyone experienced hair loss on this med?

    I have been on faslodex and Xeloda and have not lost any hair but am terrified of losing hair again. I lost most of my hair while on Taxotere six years ago. Thanks for any replies.

  • seeq
    seeq Member Posts: 1,129
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    Beckymd - I lost about ⅔ of my hair when I was on full dose (150mg × 2). It started growing back in when I reduced to 100 mg x 2. It's not ali back, but it's better. I never had bald spots, just overall thinning. I think the drug documentation says only about 30% of women reported hair loss. I hope this helps.