Verzenio: I have stage 3 lobular cancer... - My Breast Cancer ...

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Verzenio

Upk4 profile image
Upk4
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I have stage 3 lobular cancer. So far had surgery, radiation and currently on Letrozole. I am considered high risk. Did not do chemo because it is not always effective with lobular cancer. Oncologist wants to put me on Verzenio but I am reluctant due to side effects. I am 68 and a full time teacher and worry about the diarrhea among other side effects. Sorry to be gross! Anyone have any experience with Verzenio ? I appreciate your thoughts.

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Upk4
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Warrio profile image
Warrio

I'm so sorry that you are having to deal with this. Imodium is a life saver on verzenio, making sure you take 2 at the start of loose stool and one every loose stool after that. Talk with your Dr and possibly a nutritionist about a diet that may help reduce the onset of the diarrhea. Low fiber diet helped a little for me. I.e. Cooked veggies vs raw. Asking about other additional medications to help control the diarrhea. Best wishes.

ba5083 profile image
ba5083

I am 58 and have ILC (ER/PR+ HER2-) as well. Had a double mastectomy with surgical pathology reports stated they did not get it all. I did go through chemo even though my OncoType said it wouldn't do anything. Onc said he didn't want to leave any stone uncovered. I started on Verzenio in June 2023 after radiation at 150mg, dropped to 100mg and now on 50mg. Fortunately I have not had any issues to this point with diarrhea. I was told by my new ONC (switch for several reasons) changing dosages can sometimes cause diarrhea to flare up. Fortunately for me it has not. Also taking a different aromatase inhibitor very similar to Letrozole

Having said all that I am on a low glycemic diet even though I am not diabetic. I have read a lot of research about diet, cancer and the side effects of these drugs. I have also increased my Vitamin D. 92% of those diagnosed with BC are Vitamin D deficient with 80% being extremely deficient. It is important to test and not guess. I am currently taking 10000iu per day. Although it is in the normal range now it is still lower than it needs to be.

I am not sure if this helps with avoiding the the diarrhea but have also read a lot about gut health and I am currently taking a supplement called Akkermansia, It is supposed to promote gut health. It is expensive but I read 2 weeks ago that 8oz of pomegranate juice a day will convert to Akkermansia in the gut. Again not sure if this helps or not but for me so far I have been good. Other than lower WBC making me fatigued. God Bless!

Upk4 profile image
Upk4 in reply toba5083

thank you so much for your good advice. It is truly helpful. Good luck to all!

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