Curious about experiences/results from Adstiladrin treatments

I was BCG refractory in early 2024 and underwent blue light cystoscopy with TURBT for NMIBC. I recently completed fourth Adstiladrin treatment with minimal side effects. I experienced 48 hours of flu-like symptoms (e.g. fatigue, body aches, chills) after initial treatment, but side effects diminished after 72 hours. Follow-on cystoscopies have revealed no evidence of tumors in bladder. I continue to pray for optimistic prognosis, with Anktiva a potential treatment option if Adstiladrin fails. Blessings to you and others as you travel your healing journey.

Thank you for sharing. I hope you continue showing no evidence of tumors. Your experience gives me hope that my treatment will be successful too. Best of luck for your continued positive prognosis.

I was diagnosed with low grade, NMIBC in 12-23, had TURBT, Mitomycin and the six BCG treatments. I was clear at six months, but in 01-25 was diagnosed with high-grade, aggressive NMIBC carcinoma in situ. I received an intravesical treatment of Adstiladrin on March 20, 2025, and had a cystoscopy this morning that found I am clear of any tumors. The next Adstiladrin treatment is June 20, and then every 90 days thereafter. I had fatigue after the first treatment but felt well by a few days out. I hope that Adstiladrin works as well for you as it has for me. Godspeed.

Congratulations on being free of tumors! Thanks for sharing your experience- it provides me with optimism going forward. Good luck and good health to you.

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.

Usually they do a cytology for corroboration.

@djr5 how did the stent removal and cystoscopy go?

@colleenyoung

Hi Colleen - The stent removal went off without a hitch, and the Adstiladrin treatment will occur the week before Christmas. They've set up a PET scan for next week, so there will be more information to consider. Thank you for asking! I hope all is well with you and yours.