If you're starting BCG, here's my experience & yours?

My first six treatments were pretty uneventful as well. I had some fatigue throughout the week and the usual burning and urgency in the hours after treatment, but that was about it. I then had to do another round of six weeks to get all the cancer and that round was a little rougher than the first six. (Not horrible, but more burning and a couple weeks where I passed some tissue and some blood clots.) I start maintenance later this month so we'll see what happens. Thankfully maintenance is only three weeks a pop.

And yes, technician experiences may vary. There were a couple I had who were fantastic and I always breathed a sigh of relief when they walked through the door. On the other hand, I had one where they inflated the catheter balloon to the point it exploded inside my bladder. (Didn't hurt, but was quite the jump scare!)

At 79 years old I was initially diagnosed with a single high grade NMIBC which was removed via TURBT and followed by BCG treatments. One month after surgery I began a six weekly instillation of 50% BCG. Initially no side effects except temporary burning and urgency but by treatment four I was getting flu like symptoms ( body aches, headaches, nausea, fatigue etc) which lasted for 24 hrs. Regardless I finished the six treatments and three months later had three more again with progressively worse side effects, often lasting 48 hrs. Six months later I had three more treatments and had a reactive arthritis episode on the last treatment. This was a spontaneous ( within 48 hrs of the last treatment)occurrence of arthritis on my right hand, hip and knee. While my urologist wasn’t convinced it was reactive from the BCG, the rheumatologist I saw was convinced it was. We stopped the BCG treatment program at that time and opted for periodic cystoscopy to evaluate my condition. At present, I’m cancer free at present but my first 6 month evaluation is due in September, so I’m anxious to see if I’m still NED. BCG is the gold standard and I wish I had been able to continue treatment. I’m not sure what options will be available to me if they find tumors at my evaluation. Will keep u all posted.

@quahog
Hello. I read frequently that BCG is the Gold Standard, yet it seems to fail up to 50% of the time for High Risk NIMBC.
Gem/Doce, which is still being evaluated on a wider cohort than the original work, seems to have better outcomes. Furthermore, the Vesta AI system can predict whether BCG will work for the patient, thus potentially saving a lot of time and inconvenience.
I wonder if the reason for plowing ahead with BCG, which is in short supply, has financial implications for the provider because Gem/Doce ties up the treatment facilities for longer?

@gemdoc25 interesting. My oncologist told me that the bio marker predictions can be non conclusive. Perhaps it’s still under study.