To trial or not to trial (MonarchE / Verzenio)

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  • JennieTibben
    JennieTibben Member Posts: 3
    edited May 2019

    Very grateful to find this post. Started Abemaciclib last Tuesday, May 7. Have had increasing trouble with diarrhea. Will go buy fiber con today!


    Jenjie

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  • kdrake1007
    kdrake1007 Member Posts: 77
    edited June 2019

    Hello all!

    Day 126 today for me! Still on 150 mg twice a day. Labs have been okay, low end of normal for WBC. Diarrhea has not been fun but somewhat manageable. Taking fiber con daily and Imodium as needed. Have had a couple of really uncomfortable episodes of diarrhea and one really embarrassing uncontrollable episode. But overall it’s been ok. Moving on to monthly (soon quarterly) visits has helped me feel less like the constant patient!

    Read an interesting article about the Nobel Prize winner, Jim Allison, who is doing research on an immunological approach to fighting cancer. Isn’t that what this clinical trial is testing?

    https://www.wired.com/story/meet-jim-allison-the-texan-who-just-won-a-nobel-cancer-breakthrough/?utm_medium=social&utm_brand=wired&mbid=social_twitter&utm_source=twitter&utm_campaign=wired&utm_social-type=owned&utm_medium=social&mbid=social_tw_sci&utm_source=twitter&utm_campaign=wiredscience&utm_brand=wired&utm_social-type=owned

    Ki

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  • kdrake1007
    kdrake1007 Member Posts: 77
    edited February 2020

    No one has posted since my last post in June, but I thought I’d update the thread just in case anyone else might be participating in this trial or interested.

    I’m now 1 year in, 1 more to go with the MonachE trial drug (abemiciclib) then the follow up period. SEs have become much more manageable. Diarrhea is worsened by some foods so I’ve learned to avoid them or enjoy and then be prepared (coffee is a hard no!) Low RBC and WBC but not clinically significant. Overall I feel good and am doing most everything I want to do - work full time, play soccer, etc. The trial protocol calls for labs & doctor visits every 3 months and phone visits in between with the trial coordinator. It’s good to have more space between visits so I feel less like a patient!

    Now that I’m almost 2 years out from my Dx I’m not feeling the doom & gloom of impending death, but much more hopeful that I’ll be here to hug my future grandchildren! Even if I have a recurrence, I know I can handle whatever the treatment will be. And with the advances and new treatment options that will be available, maybe it won’t have to be chemo!

    Would love to hear if anyone else is participating in this trial to see what your experience has been

    Hope everyone has a wonderful 2020!

    Kim


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  • Linda2119
    Linda2119 Member Posts: 85
    edited February 2020

    Hi, Kim - thanks for posting. Here's my update.

    I started Verzenio December 20, 2018, so I'm down to 10 months of treatment. I was experiencing significant diarrhea, then I realized it was associated with dairy. Once I started avoiding lactose, I feel pretty much normal. Diarrhea only happens about once every other week, and it is hard to say for sure that it is the Verzenio. And minimal SE from the anastrozole. Occasional night sweats - bad for a few nights, then fine for weeks.

    I'm also feeling pretty good, and the stress associated with fear of recurrence is less front and center. I still have my days where I am fearful, and quite frankly, I'm going to be stressed again when the medication part of the trial ends in December. But I am able to live a normal life, with normal expectations of grandmotherhood, retirement, vacations, etc.

    I have been able to maintain my level of activity - golfing, lifting weights, cardio. My biggest challenge is lymphedema - I am dealing with a recent flare up. Other than that, I'm happy with life.

    Linda


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  • beeline
    beeline Member Posts: 308
    edited June 2020

    Hi, I just wanted to check in with other trial participants. Did you see the news that the initial end point results show significant reduction in risk of recurrence?

    https://www.targetedonc.com/view/monarche-meets-primary-end-point-with-abemaciclib-combo-in-hr-her2-breast-cancer

    I'm really interested in what your MO has said if you've discussed it. Since I ended up on the control arm, I asked my MO if I can access verzenio now. Waiting to find out.

    Hope you are all well!

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2020

    beeline, thank you for posting this! I am going to discuss this study with my MO. I will be starting a CDK4/6 inhibitor soon regardless, and I am encouraged that this trial had good results.

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  • beeline
    beeline Member Posts: 308
    edited June 2020

    buttonsmachine, so glad you found it helpful! I'd love to hear what your MO says. Is she/he prescribing a cdk4/6 inhibitor because you're high risk? My lovely MO unfortunately let me know that the trial is not allowing crossover or compassionate use, and verzenio is not otherwise approved in NZ so I could only get it through the trial for now. Sometimes cancer feels like a constant kick in the teeth.

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2020

    beeline, you are right that cancer is such a kick in the teeth! I suppose I'm high risk in the sense that I've already had multiple local/regional recurrences, despite being diagnosed at Stage 1A and being on active treatment for the last four years. It's really discouraging. My tumor does have extremely aggressive characteristics, and unfortunately just doesn't respond much to treatment. I do think treatment has slowed the progression down though.

    I have not yet tried CDK4/6 inhibitors, and my most recent recurrence grew to be about 1cm while on hormone therapy. I just had surgery and will discuss with my MO next week after the final pathology reports come back, but CDK4/6 inhibitors are a likely next step. I hope they will work for me.

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  • beeline
    beeline Member Posts: 308
    edited July 2020

    Oh buttons, talk about a kick in the teeth! I hope the cdk4/6 inhibitors work for you! Keep me posted. Will be thinking of you.

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  • kdrake1007
    kdrake1007 Member Posts: 77
    edited July 2020

    Hi beeline,

    Thanks for posting! I hadn’t seen it but will discuss with my MO when I see her at the end of July. 7 months to go then 8 years of follow up. I’ll be excited AND nervous to move to the follow up phase!

    Kim


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  • beeline
    beeline Member Posts: 308
    edited July 2020

    Hi Kim, it will be great to hear what your MO says if you feel like sharing! Congrats on being 3/4s of the way through!

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  • kdrake1007
    kdrake1007 Member Posts: 77
    edited November 2020

    Hi everyone,

    I just found the presentation of the findings of the preliminary results from September. My MO had mentioned in July that the findings were really good but didn't share any specifics. They were published late in September

    https://oncology.medicinematters.com/esmo-2020/bre...

    I've got just one more cycle to complete and then I'll enter the follow up phase.

    Hope you're all doing well!

    Kim


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