BCG treatment

I have completed my original 6 infusions of BCG as well as my first cycle of 3 treatments that are scheduled every 3 months for 2 yrs. The more treatments I've received, the harder the side effects. The first 6 were virtually unremarkable, except for the frequency. Wish I could say the same for the last 3. Each one had the normal, fatigue, burning and frequency with bladder spasms. They each went away within 5 days, just to be ready for another treatment. After my 9th treatment, I had the same symptoms but with a lot of pressure in my perineal area. The burning and frequency improved as with the other treatments but the spams and pressure did not leave me until 3 and a half weeks. The pressure felt like my bladder was falling out. The more I was on my feet, the worse it got. I lived on Azo (which is the generic for Pyridium and Ibuprofen or stronger for weeks. My tolerance is really strong, I'm a past cancer survivor times 2, each with chemotherapy and radiation with the first. My frequency continued every 2 hours for the 3 and a half weeks also. It's been 4 weeks since my last treatment and I can now say I feel back to my normal self. I had called my Dr after 10days, he ordered a culture of my urine which was negative with no suggestion for relief. I have a cysto in 3 wks, when my Uro Dr and I have to have a long chit chat cause I am thinking this was alittle extreme.

Basically it sounds like for the first year they are the same, BCG maintenance and a cystoscopy afterwards? I'm scheduled for a cystoscopy 4 weeks from tomorrow. Then it seems the 2nd year changes a bit. I'll have to see what is in store for me after the cystoscopy and of course the results! Thanks, Jay

I was wondering how to title another BCG topic and just saw this one.

I wanted to ask if I might have misunderstood a post from a few months back. I finished 6 treatments in February and read that sometimes the burning/pain/frequency get worse with each treatment. So, I was thinking each week would get worse, with the 6th week being nasty, but all the weeks were about the same.

I just finished my first 3 week maintenance. I don't remember the 6 week treatment being this bad. In fact, I only made it through 1 hour and 40 minutes of the 2 hour treatment this morning. The burning/pain/frequency afterwards is tolerable, but nasty. Is it each "treatment/segment" where it might get worse. Is it my next maintenance that might get worse? I know everyone is different, just wondering about other experiences?

My Urologist says there is no really set schedule on the maintenance, but I thought it was every 3 months for the 1st year, then 6 months for a year and then yearly?

Thanks, Jay

I truly appreciate the quick response. He is just about to go on an every 6 months series of treatments. The last 2 treatments were at 1/2 strength, so maybe they can cut it down even more. I keep trying to encourage him, but it's hard seeing him go through all of this for such long periods of time.
Thank you for your encouragement and positivity.