Protocol for maintenance therapy with BCG

I was cancer free for one year of cystoscopies and have been given a year without additional BCG treatments before my next cystoscopy in November. I am not aware of any scheduled maintenance infusions, only if tumors come back which commonly happens. I'm interested to see if preventative treatments are in anyone's plans. I haven't asked my urologist.

First four were no problem at all. The fifth was the beginning of the side effects. And they get progressively worse, at least for me.

My first 4 were uncomfortable, but not terrible. However, the 5th and 6th were horrible. Both of those seemed to coincide with a UTI discovered after the 5th, but only started an antibiotic 2 days before the 6th, too late to reduce the pain of the sixth. A month later, I was scoped and had a biopsy. Results were no cancer, (thank you God) but I had developed "chronic cystitis & features of cystitis cystica". Haven't met with the doc yet, but my research suggests this may require modifications to the BCG maintenance treatments to address these new complications. These seem likely to be caused by the irritation from BCG. Bottom line...BCG offers hope, but it's got its downside. If you are having difficulty with the treatments, you may have to accept some pain, but make sure you give feedback to your urologist and oncologist. BC treatments are a rapidly progressing field. If you feel your doctors are just shrugging off your discomfort, get another opinion. Your doc may be resistant to discussing modifications they are unfamiliar with.

I am under the understanding that if BCG has worked (no cancer after the 6 weed round of BCG, you then need to follow up with periodic three month segments of additional BCG treatments of 3 rounds each and or cystocopy. http://Www.turology.info/images/packets/bcg_schedule.pdf

Link is problematic. If you don't see a schedule, on that site search for bcg schedule.

Many thanks . Greatly appreciated. By the way I am in Australia.

A little update...My biopsy several weeks after treatment 6 was clear. In discussion with doc about the efficacy of lower dose BCG in the future "maintaince" treatments, he told me for the first time that "maybe" I had been receiving 1/2 doses to spread out the scarce BCG. Now I feel totally uncertain what dose to request moving forward. I find this totally unethical. So much for building trust!!!

I was was receiving 1mg and 1/2mg BCG for the first 6 treatments. Now my clinic in Chicago has decided that 1/3mg is sufficient. I am not aware of any phase 3 studies that show this. Mayo Clinic is one of a few urology departments that is administering the the full 1mg dose. Hospital greed? Definitely pharmaceutical (Merk, manufacturer) greed! Since BCG is expensive to manufacture.

What was your ultimate outcome?

Good morning @fmfran, I've been cancer free since my first 2 original surgeries (11/21 and 12/21) removing the cancer and resectioning my bladder. No More Cancer as of yet. My next cysto is in October 2025 🙏