What side effects did you have for how long with Verzenio.?

Posted by snowonn1 @snowonn1, Aug 16, 2023

I have a Diarhea from taking Verzenio twice a day.My doctor said that it will stay as long as you take Verzenio.I would like to hear others people opinions .

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Welcome, @snowonn1. I moved your post to the Breast Cancer Support Group (https://connect.mayoclinic.org/group/breast-cancer/) where can meet with other members who have experience with abemaciclib (brand name Verzenio) like @slapshotmary @beeme @mhsosa @lynelyn @eku @keepmoving2 @nana2020 @chickenmom10 @millard @vicsmit and others.

Several people have mentioned diarrhea as being a significant side effect. It's a side effect that can be so limiting, especially when leaving the house. Have you been prescribed anything to help keep the diarrhea under control?

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I have opt out of taking verzenio because the side effects weren’t worth the risk.
Ki67 score is 10
Ocotype score 20

Estrogen positive, her2 negative
2 lymph node positive 2 negative
Taking anastrozole 5-7 years
I thought my score is in the low - medium risk category

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I was taking Verzenio the 1st half of 2023 until a pet scan established it was no longer effective. Enterade is a commercial product I used to help alleviate the diarrhea side effect along with Immodium AD. For example, I am a golfer and would eat shortly before I'd leave for the course, drink an Enterade (mixed berry) on the way and if I felt some stomach disturbance, would take the Immodium AD immediately. It's not perfect but at least allowed me to maintain my golf activity. Hugs and prayers to you for the best outcome.

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Thank you for your response. I have to take Verzenio until it stops working....

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@chickenmom10

I have opt out of taking verzenio because the side effects weren’t worth the risk.
Ki67 score is 10
Ocotype score 20

Estrogen positive, her2 negative
2 lymph node positive 2 negative
Taking anastrozole 5-7 years
I thought my score is in the low - medium risk category

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Thank you for replaying to me.Can you be so kind to explan about the score.What does it mean?

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@colleenyoung

Welcome, @snowonn1. I moved your post to the Breast Cancer Support Group (https://connect.mayoclinic.org/group/breast-cancer/) where can meet with other members who have experience with abemaciclib (brand name Verzenio) like @slapshotmary @beeme @mhsosa @lynelyn @eku @keepmoving2 @nana2020 @chickenmom10 @millard @vicsmit and others.

Several people have mentioned diarrhea as being a significant side effect. It's a side effect that can be so limiting, especially when leaving the house. Have you been prescribed anything to help keep the diarrhea under control?

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Thank you for moving my post. My doctor gave me Imodium but...if I take it then it makes even worse than Diarhea. 🙂
It works an opposite way 🙁

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Did you all take Kisqali or Ibrance before trying Verzenio? I'm curious why your oncologists chose Verzenio? The three drugs are very similar (all CDK 4/6 inhibitors), yet all have some slightly different side effects. Verzenio is the one that seems to cause severe diarrhea.

My oncologist first told me he was going to put me on Ibrance. After surgery and radiation were completed, he then said now Kisqali had the best overall survival rate of the three drugs based on the latest clinical trials (just telling you what he told me - your onco may disagree). The downside of Kisqali is it can cause a scary heart issue (prolonged QT), but only in 4% of women. Sure enough, I had that side effect the first week, so we stopped Kisqali for a couple weeks until my EKG was normal again. Then we lowered the dose from 600 mg to 400 mg and I didn't have that particular side effect anymore. I've been taking Kisqali for 2.5 years now and will stay on it until it's not effective. Never had any diarrhea from it. I did have an significant issue with constipation which isn't fun either but you can still go out. I learned to stay away from beef and pork. Over time my body gradually started to adjust and constipation is not a big issue now. To me, diarrhea is a huge quality of life issue I just don't want. Long walks are my favorite activity.

I was just googling why Verzenio over the others and found this on breastcancer.org:

"Although Ibrance, Kisqali, and Verzenio have not been directly compared to each other in a clinical trial, doctors consider them to work equally well. May 25, 2023"

If you're unhappy with side effects, maybe Verzenio vs. Kisqali vs. Ibrance is worth a discussion with your oncologist? Best of luck in resolving your discomfort.

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@snowonn1

Thank you for replaying to me.Can you be so kind to explan about the score.What does it mean?

Jump to this post

I believe
Ki67 score is a percentage of positive stained cells
Oncotype is a reoccurrence score.
Hope this helps
Since mine were in low medium range I opt out. The side effects were for me too much to bear.

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@californiazebra

Did you all take Kisqali or Ibrance before trying Verzenio? I'm curious why your oncologists chose Verzenio? The three drugs are very similar (all CDK 4/6 inhibitors), yet all have some slightly different side effects. Verzenio is the one that seems to cause severe diarrhea.

My oncologist first told me he was going to put me on Ibrance. After surgery and radiation were completed, he then said now Kisqali had the best overall survival rate of the three drugs based on the latest clinical trials (just telling you what he told me - your onco may disagree). The downside of Kisqali is it can cause a scary heart issue (prolonged QT), but only in 4% of women. Sure enough, I had that side effect the first week, so we stopped Kisqali for a couple weeks until my EKG was normal again. Then we lowered the dose from 600 mg to 400 mg and I didn't have that particular side effect anymore. I've been taking Kisqali for 2.5 years now and will stay on it until it's not effective. Never had any diarrhea from it. I did have an significant issue with constipation which isn't fun either but you can still go out. I learned to stay away from beef and pork. Over time my body gradually started to adjust and constipation is not a big issue now. To me, diarrhea is a huge quality of life issue I just don't want. Long walks are my favorite activity.

I was just googling why Verzenio over the others and found this on breastcancer.org:

"Although Ibrance, Kisqali, and Verzenio have not been directly compared to each other in a clinical trial, doctors consider them to work equally well. May 25, 2023"

If you're unhappy with side effects, maybe Verzenio vs. Kisqali vs. Ibrance is worth a discussion with your oncologist? Best of luck in resolving your discomfort.

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OMG!!! Thank you very much for educating me with these medication!Now I can have a normal discussion with my doctor.I will wait little bit to see can I adjust myself to my side effect and if I cant I will discuss other option about medication.Thanks a lot!!!!!! I have breast cancer stage 4 with metastasizes.Can I ask -what is your stage or what kind of canser you have.I guess I am trying to understand why I have Verzenio.

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@snowonn1

OMG!!! Thank you very much for educating me with these medication!Now I can have a normal discussion with my doctor.I will wait little bit to see can I adjust myself to my side effect and if I cant I will discuss other option about medication.Thanks a lot!!!!!! I have breast cancer stage 4 with metastasizes.Can I ask -what is your stage or what kind of canser you have.I guess I am trying to understand why I have Verzenio.

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@snowonn1
I'm sure each of our breast cancers have their own nuances that may make an oncologist choose one treatment plan over another. My oncologist did say if Kisqali stopped working, he may try Verzenio next. That's curious since they seem so similar, but there are some differences.

Here is an article I found today comparing data for Verzenio (Abemaciclib), Ibrance (Palbociclib) and Kisqali (Ribociclib). Some seem to perform better in one area and others in another area. I'll let you draw your own conclusions. This may help with questions for your oncologist. It would be nice to have a single study that included all three drugs so the study criteria, researchers, etc. would be identical for all three.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10217927/
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