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I have IDC, ER+, HERS- Stage IIb and have NOT been diagnosed as metatstatic. I have been prescribed an aromatase inhibitor for a minimum of 5 years AND Verenzio for 2 years. I've recently started the aromatase inhibotor, Letrozole and am scheduled to begin Vernezio after I complete radiation - next week. What has been your experience with Verenzio. The list of side effects sounds like chemo all over again.

October 8, 2023
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A MyBCTeam Member

Verzenio is often used for those that are hormone positive, had Neo adjuvant chemo, and did not get complete pathological response. It is taken for 2 years.

October 8, 2023
A MyBCTeam Member

Since my tumors in my lung were growing so rapidly my oncologist wanted to hit it hard with the xeloda. The cycles ran 2 weeks on 1week off. It was into the third cycle that my side-effects got really bad. My immune system tanked. I finally told her I couldn't take it no more. Either reduce the dosage or I'm stopping treatment. But even with the reduction I still couldn't tolerate it. It wasn't working ,tumors were growing. That's when she started researching the results of my biopsies and found I had the ERS1 mutation. She found out about Orserdu, let me take a break from all meds for 2weeks and started me on the new treatment. I should've been on an estrogen inhibitor all that time, 3 months and my tumors were growing rapidly. I'm praying this new drug will stop the growth soon! I can function and I don't feel horrible now. My dosage is reasonable, 345mg 1xdaily. Xeloda was a painful waste of time and very debilitating. I'll never go through that again. I've learned to speak up! It's my body and my choice. Quality of life is very important. Otherwise why even bother.

February 6, 2025
A MyBCTeam Member

Actually it is an issue not really discussed here. The discussion always begins by women like you and Sheryl saying you are going to ask your doctors if they will decrease your meds. More needs to be discussed about this. Women should not be given high doses of these drugs from the get-go and need to be assertive about it with their doctors. Start low for a week. If everything is good, an increase the 2nd week and so on. How difficult is that for an oncologist to grasp?

February 6, 2025
A MyBCTeam Member

I will never understand why oncologist start these drugs at such toxic levels only to make women suffer the side effects that takes extra long to get out of your system and heal. Where is the common sense in that? Common sense tells me you start low and increase it until it becomes intolerable. They did the same thing with @A MyBCTeam Member. When she first mentioned how much Xeloda she was going to take it sounded incredibly insane to me. When you introduce a baby to solid food, you start slowly, you don't give him pizza, salami and apple pie, you start with foods that are bland. If I am a woman about to take a new medication I would demand to start at the lowest dose.

February 6, 2025
A MyBCTeam Member

Adding my information in case it helps others decide. I have been on it for 15 months. Started at 50 mg twice a day, went to 100 twice a day and couldn’t tolerate it, so I am back down to 50 twice a day. The side effects are noticeable, but not severe for me. I am extremely grateful to be able to take this drug as stage 2b with high KI 67 and high oncotypeDX score. I started anastrozole after lumpectomy, chemo and radiation, and a month later I started Verzenio.

November 7, 2024 (edited)

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Sherman, TX