Hi, I’m new to this site and I’m wondering if anyone has any suggestions to combat the diarrhea that comes from taking Verzenio? I do take Imodium after it comes on but wondered if there are any other suggestions. I also watch what I eat, avoiding foods that I think makes it worse.
thanks for any advice!
I don’t have much in the way of advice. I never did take Imodium, just watched what I ate. I didn’t have a severe case, but didn’t go out too much just in case something would happen. Verzenio was my least favorite drug and it didn’t work for me for very long. Hopefully you’ll get a better experience with it. Good luck 🍀!
Thank you. If you don’t mind my asking, what did you take instead of verzenio and what were/are any side effects? I also take letrozole.
Thanks again
I was also on Letrozole at the same time. I’m now on a trial drug, AC699. No side effects at all. Some slight fatigue, but nothing at all like previous treatments. Tumor markers are all in normal range and doing great. I hope to stay on this for a long time!
Wow, that’s great! I’m so happy for you and I also hope you can continue on it for a long time!! Thank you for responding and for the positive news ❤️
What is ac699? I never heard of it?
It’s a trial drug. It doesn’t have another name yet. Not sure how long it may take to actually get to the final approval stage and be available to all. It’s practically a miracle to me. Hoping others can benefit from it soon!
Thank You for the feedback!
Do you have bone Mets? Did you have to go thru a lot before hand to qualify? Is it pill or chemo
I have bone Mets and lobular which has shown up in my stomach twice. I also have a mutation (ESR 1? I can never remember the details once I leave the doctor’s office ). I don’t think the mutation is necessary for the trial though. Sorry, can’t remember. I just filled out a paper and spoke with the trial doctor. The first two appointments were one day of blood draws and EKGs every few hours. Now I only go once a month for blood draws and EKG and see doctor. I’m in and out in an hour. I take pills. I probably wouldn’t have done it if it was liquid chemo. I hope it becomes widely available soon! 🤞🤞
Where is this clinical trial? (Have I asked before?) Are you in a Phase 1 trial? -- Well, I did look. It is at MD Anderson. Preliminary results look good, especially for ESR1+. You must be one of the small number described in the poster at ASCO.
I wrote to the pharmaceutical and got an immediate response! From an MD. She said they will be going to Phase 2 at the end of this year, and hope to have a site in NYC.
I’m actually going to Florida Cancer Specialists in Sarasota, FL. Last time I saw the doctor he said they weren’t accepting any new patients at this time.
I am on letroxole and Verzenio for almost one year. Verzenio 150 mg twice a day. What helps me is probiotics twice a day and drinking water. I do not have any side effects. Good luck
Is there a certain brand of probiotics that you use? Thank you!
I am getting "Physician choice 60 billions probiotics from Amazon. 😀
Thank you so much, I appreciate your response
When I was on Verzenio (a hard one, relatively), they advised me to take loperamide (Immodium) prophylactically -- before taking the pill. They said to take two at the first sign of diarrhea, and then one after. That was too much for me. I really needed to use it sparingly.
Did you try taking imodium before the pill? I’ve never heard that before, I just take one Imodium after the first sign of D, however, I’m going on a trip soon and I’m trying to figure out how to deal with this while traveling! Won’t be fun if I don’t.
Thank you!
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verzenio
