Verzenio Side Effects---Take a Break?

[CincinnatiExperience]

Hi All,

I have an update to my situation that I want to share with all of you.

I am on Faslodex, Verzenio, Zometa, and (now intermittently) Retacrit (Procrit), along with pain meds, etc., but I really think it is nee of the first three that is causing the problem in my hands and feet (among other things). I consulted with my oncologist at my appointment/treatment on Monday and he agrees with me. We are going to target the Verzenio AND

HE IS ALLOWING ME TO TAKE A TWO WEEK BREAK FROM IT!!!!

So, we are targeting the neuropathy with this break. It is getting to be more than I can tolerate. Fortunately, the doc was attending an online conference on toxicity vs. tolerability this week, so he was more than willing to listen.

I take my pill at 6 and 6. So, I did not take the 6 pm on Monday, and have not taken one since (it is now Wednesday morning). I THINK things are improving. Although my hands are still pretty "dead", my regular pain med seems to be at least lessening the paid. Not much movement on my feet yet, although I do feel a bit steadier.

And now, on top of that, some of my energy seems to be returning. I can actually walk up a full flight of steps without taking a break after each step. On top of that, last night, I was up 5 or 6 times to urinate. I think the Verzenio was also the cause of my swollen feet/weight gain. I must have lost at least 5 pounds last night. Too bad I didn't check my weight before going to bed.

My hope is that my feet will get to the point that I can do a few days of walking for exercise during this short break (this has been almost impossible for several months---because of energy, and not fitting into my shoes!)

I will report back soon and let you all know how the break is going.

Anne (in Cincinnati)

[SeattleMom]

Hi, Anne,I did a little googling about Verzenio and it appears that the primary side effect is diarrhea. It doesn't sound like it is typical to experience neuropathy or swollen feet from this drug. Have you been checked for diabetes? Also, sometimes a Vitamin B12 deficiency can lead to neuropathy. God bless you and prayers that your change in treatment is helping!

Linda XXOO

[CincinnatiExperience in reply to SeattleMom]

Thanks for this, Linda. Yes, these side effects are not usually connected with Verzenio, but everyone is different. I am feeling better every hour, so it must have been something! The oncologist just wanted to give it a try. I believe in him, since he has kept me alive for 19 years now.

[SeattleMom in reply to CincinnatiExperience]

You are so right!! And so glad that you are feeling better!! 💗💗🙏🏻🙏🏻

[queeneee]

That is great news for you. Faslodex still works without Verzenio. I just took a month off Verzenio and have felt so much better that I have decided not to go back on it for a while. Just because it is the 'gold standard' to take both, doesn't make it right for everyone . Statistics deal with the general not the personal. I hope you find a solution that works for you.

[Justme153]

I'm glad you are starting to feel better! I see where queenie said falsified works without verzenio. Maybe after your break your doctor will allow you to not take it. I keep saying quality of life over quantity but non of us know what we are willing to except until we are actually in the position if choosing. Take care and I hope you find relief! And that what ever is decided it continues to keep your cancer at bay!!!

[USIrishcolleen]

Anne,

My doctor wants to put me on Verzenio after radiation, beginning on 3/5. Oh boy!

Colleen

[2019artist]

Im interested to hear the follow up to your break from verzenio. I too had a week break and the horrible joint pain and neuropathy went away! Was particularly bad in hands and feet. Pain level 8-9! Rheumatologist gave me voltarian pills 75mg and oncologist took we off the Verzenio. Next day pain at 1, now at 0! Im taking Faslodex, Zometa like you, my mets are throughout my spine. Diagnosed in 2019. Pleasepost a follow up if you can

Blessings your way.😁

[CincinnatiExperience in reply to 2019artist]

Well, I went through a whole bunch of other stuff between then and now. The bottom line---I am no longer on the Verzenio. Neuropathy is starting to clear up and I am feeling better overall. Wicked drug, but if it works, should we complain?