Anyone had treatment with Mitomycin?

Hello @fighting50 and welcome to Mayo Connect. No experience with Mitomycin here, as it was not yet approved for bladder cancer when my husband's urologist wanted to try it. The doctor was eager to use it and see positive results, but my husband's cancer was highly aggressive and initially muscle invasive, though the later recurrences were not. It looks like it has good percentages of success in intermediate to low grade BC. I understand that it is similar to BCG in side effects. Good luck with it and I hope you get some feedback here from others who have experience with it.

Thanks so much! I appreciate your words of encouragement.

@fighting50, I'm tagging fellow members like @fay48 @codyboo @tuck19xkrle @plugger, who I believe have experience with mitomycin for bladder cancer and can share more.

@fighting50, did you start mitomycin treatment yet? How is it going?

Yes, I just started them on Thursday and so far I have experienced no side effects. It’s going better than BCG and Gemdose went actually. Does your urine always change blue? Mine has not. Also, I held it in my bladder for 90 minutes rather than 2 hours to help mitigate side effects.

I had one Mitomycin treatment post TURBT in January 2024. I had a severe reaction - neurotoxicity - and was hospitalized for eight days. My doctor said mine was the only such reaction with which he was familiar. I certainly hope your experience is better.

I'm so sorry you went through that. It must have been scary and a lot on top of already being in treatment. I of course had warnings about it too. But so far so good. Maybe just some tummy issues.

Glad to hear it's working, and hope you fully recover.