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@chickenmom10

Have estrogen positive her2 negative breast cancer. I have been in anastrozole for about a year. Had a follow up appt with hematology doc. They are asking me taking verzenio fir 3 years on top of what I am taking now since the fda has approved. Has any one been asked to take this?

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Replies to "Have estrogen positive her2 negative breast cancer. I have been in anastrozole for about a year...."

I chose not to take any hormone therapy but are you considered at high risk for recurrence, if so it's been approved for patients who are considered at high risk of recurrence and node positive breast cancer.

I’m not at high risk. Thanks

Why did you chose not to take hormone therapy? Curious

Hi @chickenmom10

I take Kisqali for MBC (2.5 years so far). The other two choices were ibrance and Verzenio. My oncologist said Kisqali has the best track record for longevity (at least it did 2.5 years ago, not sure if new results are out). Even though they are all similar, there are slight differences so they each cause slightly different side effects. I know of someone that took Verzenio and had horrible diarrhea from it. I've also read lots of reviews on drugs.com that said the same. That would be my concern with that one. That's a big quality of life issue to me so that would be my last choice of the 3 meds.

From the Verzenio website: Diarrhea is common with Verzenio, may sometimes be severe and may cause dehydration or infection. The most common time to develop diarrhea is during the first month of Verzenio treatment. If you develop diarrhea during treatment with Verzenio, your healthcare provider may tell you to temporarily stop taking it, stop your treatment, or decrease your dose.

The other two meds have their own list of side effects. Kisqali can cause a dangerous heart rhythm which I actually had the first week so we had to stop and reduce the dose. Only 4% of patients get that with Kisqali though, but something to watch for.

I took verzenio but had to stop after 40 days because of horrible side effects and diarrhea. I asked my oncologist to do something, and she insisted I stay on the drug. She did not seem to understand how sick I was.
I finally stopped on my own after 40 days because of all the side effects.
Do I think I should have been put on a lower dose in the beginning ,probably?
I am still on the estrogen blocker, but no chemo pill.
I now have to take a blood thinner because the verzeino caused blood clots in my lungs.
Even though I took the Verzenio for such a short time, it quieted cancer in my lungs.
So Verzenio is a great drug if you can tolerate the side effects
I am due for another Pet Scan at the end of July to see if I am still ok.

Thank for that website.

I was first diagnosed with HR+HER2- bc in 2018. Double mastectomy, chemo and radiation after which I was prescribed Anastrozole. My onco was persistent about getting me into a Kisqali (Ribociclib) study for women in my situation (high risk but no metastis) that I hesitantly signed up for. In 2021 I had eye infections in both eyes, 6 months apart, that left permanent ulcers on my corneas so am now legally blind. I have been fitted with scleral lenses that really help with vision but have lots of issues themselves. I immediately stopped taking the Kisqali after the 2nd infection. Unfortunately I was diagnosed with stage 4 metastatic bc in Dec 2022 and started a regimen of Fasoldex, Xgeva and Verzenio in January 2023. Diarrhea with the Verzenio has been problematic. More bad news this June, a pet scan showed the Verzenio was no longer effective at keeping the cancerous cells in my lung at bay so I am being scheduled for chemo treatment using Abraxane with the hopes this will keep the cancer from advancing. All this to say if your cancer is not metastatic and you are not high risk, my personal feeling is to not add the risk of infection and side effects of Verzenio or any similar drug.

I have a similar diagnosis. I've been on Verzenio and Anastrozole for 1 year post surgery/chemo/radiation. I experience joint pain, intermittent diarrhea (manageable w/smaller meals, lower fat), and severe hair loss (wearing a wig now.) No infections so far. The +/- 30% reduction in progression from Stage 3 to Stage 4 at the 2 year mark shown in studies makes it a worthwhile effort for me. If you do go ahead with the Verzenio, be sure to fill your prescription at the hospital pharmacy, they will help enroll you in a program that waives the otherwise huge copay. Also talk to your Dr. if you have osteoporosis in your family and they can add preventative treatment. I hope all goes well for you.