Anyone treated with Adstiladrin for BCG-unresponsive bladder cancer?

So helpful to hear a positive--good luck!

How difficult has the neobladder proven to be?

informed today that I need to pick up some meds to take so I can refrain from peeing too soon after instillation of Adstiladrin, Anybody know what that is?

I didn't receive any such meds after my first treatment. This is the first I've heard about them. I was treated (bladder filled with Adstiladrin), stayed in the doctor's office for an hour with my ability to pee prevented by a clamping device, then I was allowed to pee and was sent home.

The drug they prescribed for me was oxybutinen It calms bladder spasms. I take it 2 hrs before procedure

they want me to take Gemtesa already 3 days before appointment

just had my first dose 6/25/25. It took about 6 hours for all the side effects to come forward and and they came in HARD -4 days later still affecting me. I only lasted 20 mins after drug instillation, that was hard. So Sept will see with scope check brings

Update to June 4, 2025 comment. I had the second Adstiladrin treatment on June 20, 2025. A cystoscopy on September 5, 2025, showed tumors in the bladder; a CAT scan on September 16, 2025, confirmed the presence of the tumors, and a biopsy was set for October 24, 2025. I had another Adstiladrin treatment during the interim , on September 19, 2025. On October 24, 2025, at the biopsy, the urologist found the bladder to be clear of any tumors (he spent an extra 15 minutes searching, but found nothing). However, he did find a thickening of the tissue in the right ureter near the bladder. This was brushed (not cut) and pathology found no malignant cells, but said the sample was too small to provide a firm finding. Pathology did find some squamous cells and some cells without nuclei. The urologist placed a 10-inch plastic stent in the right ureter, from bladder to right kidney. It is temporary and will come out on November 18, 2025; another cystoscopy then, too. Urologist is scheduling a PET scan, in coordination with my oncologist. So, as of the time of this writing, it appears that Adstiladrin is still working for me in keeping the bladder tumors at bay. Barring any changes, I'll have my fourth intravesical treatment in mid-December. I'm grateful, and looking forward to Thanksgiving with all the grandchildren.

I got one treatment and was told if any new tumors I could not get a second dose of adstiladrin!

@nana2three2025
I would run that statement past someone other than the person who made it. It is certainly contrary to my experience. I don't know what area of the country you're in, but Mayo has excellent providers and I would expect you could get an informed answer there.