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Abemaciclib Verzenio for All Stages



  • juju-mar
    juju-mar Member Posts: 200

    prairie sea,

    Thank you for the suggestion. I want to be prepared! I just started the med yesterday.


  • iska
    iska Member Posts: 1

    Hello. Where could I find more information about Verzenio compared to Herceptin? Pros and cons of each for early stage triple positive breast cancer?

  • seeq
    seeq Member Posts: 991

    Iska - I don't have any info for you, but you might ask in a herceptin thread, or one for HER2+

  • Dnew
    Dnew Member Posts: 1
    @muska I am 3 years post-diagnosis. My onco said exactly the same as you mentioned about Verzenio. You have to start right after initial treatment not several years past(at least there is no data to support that this will benefits you).
  • basquemomma
    basquemomma Member Posts: 4

    I also was started at 200mg 2x a day and I've been taking that for about 3 years 10 months. The fluid under my right lung in my pleural cavity has decreased A LOT and the fluid around my heart is gone too. Doing pretty good, but I am getting some side effects now that I need to speak to the doctor about. Mainly, a severe stomach cramping episode I've had about 4 times now over the last year that starts early evening and doesn't let up until early morning. Feels like I'm in labor.

  • jen2957
    jen2957 Member Posts: 75

    Hi, all! I just came to this topic threadfor further insight from the community regarding abemaciclib/Verzenio after watching a webinar in which Dr. Sara Tolaney, Chief of Breast Cancer Division at Dana Farber, outlined the highlights from the December, 2022 San Antonio Breast Cancer Symposium. I was specifically interested in the MonarchE Study results at 4 years of followup, but she provided a lot of great info and updates on a range of topics beyond this one.

    The MonarchE segment begins at around 18:20 mins in. She does a nice job of explaining the benefits, limitations, and which non-metastatic ER+ patients for whom it's recommended. I am 13 months into aromatase inhibitor treatment, and qualify under the recommendations due to 1+ node and >5cm tumor, so I plan to ask my MO if he sees any value in adding the CDK/4 to the mix at this point- particularly considering side effects and absolute benefit %. I thought some of you may be interested in the info as well

  • vlnrph
    vlnrph Member Posts: 439

    I had a good 4 year run on abemaciclib for bone mets, recently ended due to liver lesions popping up. For me, loperamide worked too well, causing an unpleasant level of constipation, so after a Verzenio dose decrease to 100mg, I took 2 FiberCon tablets daily at noon.

    The generic=calcium polycarbophil, is found in the laxative (!) section. I preferred it over psyllium/Metamucil for travel portability, etc. There were still bouts of loose stool, sometimes diet related, however we're retired which meant during the pandemic we were mostly at home anyway.

  • beeline
    beeline Member Posts: 193

    Folks, we created that thread and BUMP it because we heard feedback here that you (and likely others) don't get the information you need from our Announcement on the All Topics page. This way, the information stays in front of folks who don't visit the forum 24/7. If you'd like to no longer see that thread, please use the block thread feature.

    Thank you.

  • bong
    bong Member Posts: 40

    hi - apologies in advance if this is too much info but a handful of times, diarrhea came with specks of black. Anyone had this happen? Not sure if this worth freaking out over. Thanks in advance

  • mvspaulding
    mvspaulding Member Posts: 163
    edited March 22

    hi I had posted a question about Verzenio and got directed to this discussion . Just found out today I will start Verzenio alongside Aromasin after I finish radiation in about 6 weeks. I’ve been reading about the side effects and it’s pretty scary to read. My hair has started to come back after chemo and hate the thought of losing it again. Has anyone had that side effect? I took Arimidex after my first diagnosis for five years and tolerated it ok. Had side effects but it kind of became a new normal. So the Aromasin does t scare me as much as the Verzeni

  • seeq
    seeq Member Posts: 991
    edited March 23

    mvspaulding - I've had hair 'thinning' on Verzenio. I'd estimate between half and 2/3, based on the size of my ponytail. That was on full dose of 150mg x2 per day. After the dose reduction to 100mg, some of it - I'd guess maybe 1/3-1/2 of what I lost - grew back. The GI issues were a bigger problem, and the dose reduction eased that some, too. Not everyone has GI issues.

  • margecandoit
    margecandoit Member Posts: 113

    I been on it for 9 weeks now. It hasn’t been to bad. My hair has been growing bad still. I did notice my leg hair isn’t coming back as fast. My biggest issue is fatigue. I get really tied at night. I would stay up to about 10 now I am getting really sleepy at 8:30. I was also winding about blood work being on this. What have other blood work been. I have had low white blood count and high RDW-SD. Not sure what all that means.

  • seeq
    seeq Member Posts: 991

    @margecandoit - I've had low WBC and RBC pretty consistently, but not worrisome to my MO, and never needing a break from treatment. There have been other makers slightly high or low, but MO was absolutely not concerned with them (MCHC, MPV, MCH, ANC [but never below 1.1]) I've had other elevated numbers related to my liver mets (all resolved), but nothing that should be an issue for you. If you're at 9 weeks with minimal side effects, you're doing great! Good luck to you!

  • margecandoit
    margecandoit Member Posts: 113

    Seeq- thanks for the response. Yeah I feel I am doing ok and my MO isn’t concern about my blood work. Thanks for letting me know it’s normal. I just didn’t know what the high RDW-SD was when I had normal RBC count. I am assume just some things out of wack with meds.

  • lindainjefferson
    lindainjefferson Member Posts: 1

    My oncologist has suggested I take Abemaciclib as a phophylaxis against recurrent breast cancer. I have had a mastectomy with no nodal involvement and am currently taking aromatase inhibitor. My recurrence score is 33 and while I am "cancer free" they say it will recur with this score. I declined chemotherapy. Is anyone on here taking Abemaciclib prophylactically? What are your side effects? I understand diarrhea is the main one. I read that it crosses the blood-brain barrier so am worried about long-term cognitive issues. Thank you and my apologies if I am not posting this in the correct place. I'm new here.

  • seeq
    seeq Member Posts: 991
    edited June 14


    Hi Linda. My main side effects at full dosage (150mg x 2, plus an AI) were fatigue, diarrhea, and hair thinning. The fatigue improved somewhat over a few months, and then noticeably after I had a dose reduction after 7 1/2 months (my bc was no longer visible on scans by then), and more of my hair started growing back in (bonus!

    I can only speak from a Stage IV perspective, but crossing the BBB is considered a good thing because it's expected to help prevent brain mets.

    There are two other threads for abemaciclib for Stage II/III that have a lot more traffic than they used to, now that it's more widely prescribed. You may find people there who relate more closely to your experience.

  • moderators
    moderators Posts: 6,960

    Great idea, @seeq!

    @lindainjefferson Here are the two other threads about verzenio (abemaciclib) that SeeQ mentioned:

    Verzenio for Stage II

    Verzenio for Stage III

    We hope this helps!

    —The Mods

  • mojos
    mojos Member Posts: 24

    RC Horowitz has a paid research opportunity for someone on verzenio, ER/PR positive, Her2 negative and diagnosed within the last 3 years. The study is a one hour zoom interview with a person who provides emotional support to you, accompanies you to medical appointments or helps with making medical decisions. The person can be a spouse, partner, sibling, friend, or relative. The stipend for the interview is $175.00. If you think you qualify, please send me a private message and I will share the contact info. I have done a study with the company earlier and they are good people. Thanks. Mary Jane or mojos on these boards. Thanks.