Anyone Having to change to Verzenio - SHARE Metastatic ...

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Anyone Having to change to Verzenio

Bettybuckets profile image
9 Replies

Hi Ladies,

My PET shows bone only disease is stable but markers were up and I have this lymph node in neck that is bulging again. So we quickly changed from Ibrance/ faslodex to Verzenio/ aromasin. Onc says she is trying to get more time( just 18 months so far) out of the CDK 4-6 class before the rear view window. He nearly put me on xeloda but then I got the Foundation Med Path report which showed no driver mutation but saw a signal that estrogen is still a target to be exploited… just needed to tweek things. Has anyone else done this? I’m treated by an expert in ER+ breast so I trust him.

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Bettybuckets
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9 Replies

Good to know you are in safe hands with someone you trust.I am with the Nhs in the Uk. Don’t think they do tweaking.

Hoping for many more years for you

Clare

Hazelgreen profile image
Hazelgreen

Great photo, Beth! You and your daughter are looking good. I've read positive reports about verzenio which is described as a more aggressive targeted drug than the other two.

I'm on ribociclib, and oncologist is pleased about its control over my bone and organ mets.

Warm wishes,

Cindy

Arisgram profile image
Arisgram

Hey Beth, I almost didn't respond because I didn't want to add to your anxiety.....but maybe.....if you have a similar experience with Verzenio as I had....you at least won't be blindsided.

I failed at Ibrance after 16 months. I moved to everolimus which failed after 3, Xeloda which failed after 6 and then Verzenio. For me, and we all respond differently, Verzenio was the devil. OMG, I felt horrible!!! I was almost glad it didn't work. Crippling fatigue, uncontrollable diarrhea, weakness, depression.

However, I can tell you, I've never heard another person who had as tough a time as I. My oncologist was SHOCKED. He walked in the exam room after I had been on it for a month. His first words were, "You look like shit." I felt worse than that! But, as I mentioned, the drug failed, and I moved on.

I hope your experience is NOTHING like mine!! Best of luck to you.

All the best, Andi

Bettybuckets profile image
Bettybuckets in reply toArisgram

I appreciate the warning. I feel pretty tired but I don’t want to fail. Maybe they can lower the dose. Thanks for reaching out. What is next for you?

Arisgram profile image
Arisgram in reply toBettybuckets

I'm on fulvestrant/ibrance but not too confident it's working. Onc wants me to move to Taxol. I'll probably opt for Lynparza.

LadyKatarina profile image
LadyKatarina in reply toArisgram

HI Andi--What were you taking Verzenio with? What dose? And what were you taking Ibrance with? Thanks so much! Kay

Arisgram profile image
Arisgram in reply toLadyKatarina

I should have added tamoxifen but doc wasn't too confident in the combo, and I felt so terrible, I just didn't take it. I don't remember the Verzenio dose. We decreased it, but even with the decrease, I was beyond miserable. My first round of Ibrance was with aromasin. I'm now trying ibrance and faslodex.

Bettybuckets profile image
Bettybuckets in reply toArisgram

I did just fine on it after lowering the dose.

Bettybuckets profile image
Bettybuckets

I’m on 150 mg twice daily… less than a week in and diarhea is just starting in earnest

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