Abemaciclib Verzenio for Stage IV

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Comments

  • kathrynw1thasea
    kathrynw1thasea Posts: 187
    edited April 16

    @eleanora I wouldn’t assume that you will have the worst of the side effects. There are plenty of ladies who don’t. They just don’t tend to tell their stories or seek solace from those that do. I know a few. Plus, you can always inquire about a drug vacation. I took a 3 week European bucket list vacation minus letrozole and started to feel fabulous mid-week two. I was already off Verzenio at the time, but in hindsight I might have been able to lower the dose and been just as successful at controlling the Verzenio side effects. You could ask about dropping down to 50mg of Verzenio for a week or so.

  • eleanora
    eleanora Posts: 558

    @kathrynw1thasea

    great advice! Thanks . Not really thinking rationally right now.

  • seeq
    seeq Posts: 1,278

    @eleanora - I don't know that you need to rule out traveling. Everyone is different, but I've been on Verzenio since 2020, and I still travel. I've had to pass on some things - like the three hour boat tour of Lake Havasu. That was when I was 150mg, and even if there was a bathroomon the boat, I wouldn't have been comfortable. . I've made several cross-country driving trips, cruises, and domestic flights. We keep our driving days fairly short, and my hubby knows we may needed to stop more than once. I have a better idea of how I eat (what, when, and how much) affects me, and I use immodium profalactally for longer days or when I have less control over the schedule.

    Hopefully, you'll figure out what works for you and still be comfortable doing what you want to do.

  • eleanora
    eleanora Posts: 558

    @seeq

    Thank you for the practical tips and the hope!

    I received my last scan report today (brain MRI). Fortunately, brain is clear. Only issue seems to be a 5mm met on the bone on the left side of C1. Nuclear bone scan showed some activity in formerly sclerotic mets in the left femur near the hip. Not qualified to diagnose myself, but feeling a little upbeat that I still seem to be bone only.

    Not looking forward to MO appointment tomorrow. She is a "glass half empty" type. In the process of obtaining a second opinion from Johns Hopkins.