Anyone had treatment with mitomycin (Zusduri)?

Sorry to hear of your experience with Mitomycin side effects, @orthobone35. I received one intravesical instillation of mitomycin following a TURBT in 2024. I had a very rare reaction (neurotoxicity) and spent the next eight days in the hospital. It took about six weeks to get back to my starting point. I then had a course of six BCG treatments, recurrence of the tumors in 2025, and about nine months of Adstiladrin. Another tumor was found in February, 2026 and removed earlier today. I'm a bit gun-shy of chemo now, but will have to have treatment. I'm 71.

Prayers for you and yours.

@orthobone35 that sounds like a dramatic change in side effects. I am wondering if they are stopping your treatment or taking a holiday from it? My husband had this infusion once at the end of surgery so a foley catheter was in place and on pain medication so hard to know what was due to the drug. He never had it again.

@colleenyoung I received my 3rd treatment last Wednesday (its now the following Monday) and the side effects are worse. For the first 16 hours after it feels like acid has been poured into my genitals, advil, Tylenol which my team has suggested does not touch it, and the pain is constant. I did expect pain and blood when urinating plus fatigue, but both are much worse than with the BCG. I am going in this coming Wednesday for my fourth and I am going to demand something much stronger for the pain at least for the first 16 hours after the treatment. I don't want to sound dramatic, but this is almost inhumane.

I had two instillations of Mytomicin-C following a TURBT procedure in 2025. This was a chemo application applied directly to the bladder after tumor removal. There were no unusual side effects for me for both of these applications. I was provided with a Foley catheter for both procedures lasting 3-4 days at a time until removed.

@dilbert1955 Glad you had no side effects. However this is not the same. This is once a week for 6 treatments with Zusduri which is Mitomycin but with a different type of delivery system. It's a Gel that is delivered from the hospital pharmacy in 4 syringes packed in ice and infused thru the catheter, then the body warms the gel and it is more of time release. I've had BCG, and Mitomycin treatments in the past but nothing has given me the side effects that I'm experiencing with the Zusduri. It may be different for others, I'm just relating my experience. It is a new procedure that has only recently been approved. I'm just the second patient to receive at a very prestigious teaching hospital. The white paper looks good but man this has been a tough journey so far..at least for me. I have 3 more visits and not looking forward to them, but hopeful that it will be worth the pain.

It's awesome that you have access to cutting edge therapy. I hope you can have good results and the least amount of discomfort possible.

Yes, I took it after BCG and Gem-Dose didn’t work. It may have triggered an autoimmune in me.

@fighting50 you had Zusduri?

@orthobone35, how did it go on Wednesday?

@colleenyoung I've now had 4 treatments and they are all pretty much the same. All I can say is that It's resulting pain and fatigue is no joke. Two more to go and I pray it works.