Posted on: Sep 28, 2021 12:04PM - edited Sep 30, 2021 04:38AM by seeq
Posted on: Sep 28, 2021 12:04PM - edited Sep 30, 2021 04:38AM by seeq
seeq wrote:
I've noticed there is a Verzenio discussion in the Stage IV only section, and another in the Stage III forum. I'm starting this thread because I think there could be a benefit from sharing between all the stages - especially when, and if, Verzenio becomes a more common standard of treatment.
I started Verzenio 14 months ago. I had a couple of large tumors, plus lots of smaller ones in my liver, and then they found a little (15mm) tumor in one breast. After 7 months on Verzenio (150mg x2) and anastrozole, I was NED (by PET-CT).
I've had a little low RBC and WBC, but nothing that required a break in treatment.
The SEs were not fun - extreme fatigue, food aversion, and of course, diarrhea - but the results are well worth it IMHO. A few months later , I requested a dose reduction (100mg x 2), because the big D was becoming more of a problem. While I still have fatigue, I feel much better and the D is manageable again.
In the interest of keeping the discussion friendly, I do request that there be zero political comments and COVID discussion limited to the impacts between COVID and Verzenio. Thanks.
SeeQ
Sep 30, 2021 02:10PM threetree wrote:
I agree 100% re the need for a big change in treatment research, etc. Find something that kills cancer, and quit spending the money on "awareness" and band aid solutions that have horrible side effects; just find away to kill those cells for good!
Oct 3, 2021 08:47AM juju-mar wrote:
here's my dilemma ladies,
My script for Verzenio is ready. Doc did change the pills to 150mg twice a day. My husband and I have a 5 day trip to Las Vegas Nov 5-10. I'm tempted to wait to start this med til I am back home just in case the diarrhea is bad. Or do I start it now and get 3 weeks of med into my system? MO is ok with me waiting. I just have had so many delays with my cancer treatment. But a few weeks should still be ok at this point.
Julie
Oct 3, 2021 10:19AM mkestrel wrote:
I've just started Verzenio and the D has hit me today at day 10. I don't have any answers, everybody's probably different. I've had the opposite problem all year because I have spinal cord damage. Anyway I think I will wear a diaper if I have to and do what I want, not live by the toilet...I hope it hammers the bone mets so it doesn't eat more spine bones and ribs. I hope it doesn't tank my white count as bad as the Ibrance. I welcome advice from anyone who has dealt with it for a while.
Oct 3, 2021 12:06PM threetree wrote:
If it was me, I think I'd wait - especially if the oncologist was OK with it. I'm sure many would not wait though, so of course you have to do what is comfortable for you. Re the diaper suggestion above. It would be convenient in many ways, but they do get smelly in public, just sayin'.
Oct 3, 2021 02:07PM mkestrel wrote:
No they can't smell me, the whole town has COVID!
Walk with my husband and blame it on him.
Borrow a nephew and blame the baby.
The public can't smell me anyway, they are all vaping pot.
Blame the sugar beet factory (our valley already stinks).
It would help me get first in line at the grocery store.
It would empty the restaurant.
Sink plug? Great stuff foam? Box of tampons? Maybe I'll carry my camp bucket with me. If it gets worse I'll try Imodium I guess, but I've spent most of the year constipated and anything that makes me tired makes my hobble walking even worse.
Yeah this would be hard to deal with on a road trip.
This stinks.
Oct 3, 2021 03:42PM seeq wrote:
MKestrel- you might try using immodium prophylactically. I found, when I was on 150x2, two a day was too much, one a day not quite enough. My MO suggested liquid immodium might be easier to adjust the dosage amount (e.g. 1.25 or 1.75 dose). I learned to use the immodium plus, or add Gas-X with regular immodium to help with cramping (most of the time). Since my dose reduction, one immodium in advance will usually control it for a day or two.
Also, some people don't have any problem with D, for some it's short-lived. (Usually starts between day 6 or 8, according to the literature).
Also, many people found some measure of relief by adding daily Metamucil (any form (liquid, capsules, etc) or Fibercon ‐ psyllium husk, because it absorbs liquid in your system. Adjust the frequency and amount to suit your needs.
Oct 3, 2021 04:07PM mkestrel wrote:
Thank you SeeQ, I hope your input will help my output.
Oct 3, 2021 07:26PM threetree wrote:
MKestrel - Lol re the reasons why you won't be smelling! Loved the list.
Oct 12, 2021 12:36PM weninwi wrote:
I'm a bit confused now about where best to post....at the "Abemaciclib Verzenio Stage IV/Metastatic Beast Cancer ONLY" forum....or this new forum that was recently started "Abemaciclib Verzenio All Stages". I do know that when I first started visiting the Stage IV ONLY forum, I very much appreciated the long post by zarovka (from January 1, 2018) with all the details on Verzenio written Constantine Kaniklidis that headed every page. The information by Constantine Kanklidis is invaluable and worth preserving.
Oct 12, 2021 12:49PM seeq wrote:
WenInWI - feel free to post in either place. While I think everyone is welcome to read both threads, only Stage IV are invited to post in the Stage IV forum - and I think some will not read in the Stage IV forum. I started this thread as a place for us all to ask questions and contribute. Since Stage IV has been using this drug longer, we may have experience to share that would be helpful to other stages, and everyone's experience is valuable.
Do you think I should edit the original post to clarify?
