Anyone had treatment with mitomycin (Zusduri)?

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.

I have had two of the six treatments for low grade bladder cancer with Zusduri. In the past I have had the full treatments with BCG and Gemcitabine. The side effects I'm experiencing are much worse with the Zusduri. This is a very new treatment and I'm wondering if there is anyone else who is going through these and if you are having bad side effects. Thanks

@orthobone35, I moved your post about Zusduri (mitomycin) to this existing discussion.
- Anyone had treatment with mitomycin (Zusduri)?https://connect.mayoclinic.org/discussion/mitomycin/

I did this so you can connect with other members like @fighting50 @djr5 @fay48 @codyboo @tuck19xkrle @plugger, who have experience with mitomycin for bladder cancer and can share more.

Sorry to hear that you are having bad side effects with this newer treatment. @orthobone35, what side effects are you experiencing? Did you have to discontinue treatment or are the side effects being managed?

@colleenyoung, I'm a 76 year old male who has had numerous injuries in my life and can tolerate pain fairly well. After the first treatment it was about what I expected. Some pain in genital area and some pain when urinating, frequency, and fatigue but nothing that I haven't experienced with BCG and Gemcitabin. It was tolerable. But after the second, you can times all of those side effects by 3. Extremely painful in genital area with spasms. Also on the second day after this treatment there was genital edema which was pretty scary. The pain when urinating is real bad and the frequency is such that I'm afraid to leave the house. The 5th day after this 2nd treatment was the first of seeing blood in the urine. My biggest fear is that this could get worst as treatments progress (4 more to go) My next one is tomorrow and I will discuss all this with the treatment team.