Posted on: Jan 23, 2021 07:35PM
Posted on: Jan 23, 2021 07:35PM
GraceBer wrote:
I may need to venture into the mets forum for SE coping strategies, but I’m wondering if there’s anyone else who’s been put on Verzenio (vs Ibrance or Kisquali) to prevent recurrence? My MSK oncs and Yale onc (I switched to Yale this past summer) all agreed that I should be put on a CDK 4/6 inhibitor. We waited until this fall (regional recurrence that made me stage III - DXed July 2019), due to finishing treatments and me pushing it off further due to Covid, to start. And though I was originally going to be put on Ibrance I was put on Verzenio due to its positive data coming out of the trial.
Oof! Verzenio has been rough. The Covid silver-lining is that being at home all the time is convenient for my now daily attacks of diarrhea, but I’ve got to get it under control because I want to have a better quality of life (especially in the Covid After Times).
Immodium is pretty effective at stopping the diarrhea after one or two episodes, but it hasn’t been effective used as a preventative. So, I’ve turned to probiotics a week ago. I’m taking a daily capsule of Align and trying to eat some yogurt every day. So far, I’m seeing no improvement with the probiotics.
I’m trying to up my water intake and have supplemented it with the Liquid IV powder (basically, healthier Gatorade - electrolytes with more vitamins and less sugar). That’s helping me with dehydration and keeping labs looking pretty good.
i’m taking 150mg - the recommended dose. If I can’t find a better way to manage the GI side effects, I think we’ll need to reduce my dose.
Ugh! This sucks 😕
Sep 6, 2021 06:09PM scaredme wrote:
Very interesting that your numbers were better during active chemo because mine were as well! I guess that I am fortunate thus far because my only side effect past the first week has been some mild stomach issues at times. So bummed that the bloodwork may do me in!
Sep 7, 2021 10:08AM juju-mar wrote:
hello all,
I am going to ask my MO about Verzenio next Tuesday. I had genetics blood work done and need to find out my CDK 4/6 and Ki67 numbers. I am Stage 3A, grade 3 with 2 + nodes. But assume after chemo, mastectomy and radiation I should be NED. My MO said the FDA may authorize this drug for non metastatic patients by the end of the year....Any questions I should ask? Thank you!
Juli
Sep 15, 2021 09:30AM - edited Sep 15, 2021 11:44AM by scaredme
I would recommend inquiring about side effects. I don't feel that I asked enough questions before agreeing to start and was really surprised when the nurse navigator starting telling me all about what might happen. I guess like 90% of people experience diarrhea and 40% experience issues with their blood counts, you can get mouth sores, blood clots, have hair loss.. the list goes on and on . I have to go for blood testing every 2 weeks for the first few months. It has kind of put me back into being a patient, which isn't great psychologically.
That said, I am past the first month and doing ok other than potential issues with my blood counts, occasional diarrhea and some stomach cramping, so I am committing myself to persevere.
All the best to you. This drug isn't for the faint of heart (and this is coming from someone who sailed through A-C chemo)
Sep 15, 2021 10:21AM juju-mar wrote:
scaredme,
Thank you for the info. I have Crohn's disease ( in remission for 28yrs), so I'm familiar with stomach issues. My Ki67 "rate" is 25%, my tumor was greater than 5 cm, one lymph node had 1cm cancer so I qualify for the med. I'm willing to try anything to keep the cancer from coming back. I too had very few side effects with AC +T. Hope you are doing well.
Julie
Sep 17, 2021 07:17PM scaredme wrote:
Look like I am getting my first dose reduction. My absolute NEUT count was .92 (1.92-7.60 K/uL being normal), I was told to stop taking the pills until I got my new pills (100 versus 150) in the mail.
Sep 17, 2021 08:28PM juju-mar wrote:
scaredme, can I ask how you got the meds? Looks like you are stage 3, not 4. I'm a little mad that my MO didn't consider this drug for me earlier. I had to ask her for it. Makes me wonder if I hadn't brought it up, would she have eventually! Does your insurance cover it? Thanks.
Julie
Sep 18, 2021 11:10AM - edited Sep 18, 2021 11:50AM by scaredme
My oncologist mentioned that it had dome well in the Monarch-E trials and I asked to be put on it. It is not yet standard of care for our stage. My insurance (Blue Cross) has covered it 100% - It just has to go through the Dana Farber pharmacy (I go to Dana Farber, obviously).
Sep 24, 2021 03:30PM juju-mar wrote:
insurance has approved the Verzenio! I waiting to hear what my copay is, but I think I should be able to start it in the next 2-4 weeks or so. The dose is 200mg tablet twice a day. That seems like a lot. But nice to know we can lower the dose if the side effects are bad.
Julie
Sep 24, 2021 05:08PM - edited Sep 24, 2021 05:36PM by scaredme
I am surprised that they put you on such a high dose. They started me on 150 twice a day and have moved me down to 100 because of low blood counts. It'll be interesting to see how you do with it (Hopefully better then me!). I am currently on a break from mine to build my WBCs back up, plus I have a root canal scheduled next week so I will go back on the lower dose a week from tomorrow.
Oct 4, 2021 10:05PM juju-mar wrote:
my MO said their system defaults to 200mg twice a day, and will be switching it to 150mg twice a day. So that's what I'll start on. I have a quick trip with my husband Nov 5-10, so I won't start it til after I get back. Good luck with the root canal.
Julie
