Stevemac,
Welcome to the forum.
BCG hits everyone differently. Some sail through with now bother. I'm on the opposite end of the spectrum; like you the side effects hit me hard. Reducing the dose offers little relief for me, others find great relief.
I have been chasing CIS for 3 years and 3 months (who's counting). BCG knocks it down, I get a clean scope or TURBT or two, then it's back. I'm up to 24 BCG plus maintenance, with various add-ins and intravesical chemo. The CIS has not progressed but just doesn't seem to want to leave.
I'm not a good candidate for a RC due to prior injuries, so the battle with the CIS continues.By all opinions, BCG is the #1 choice for CIS. Various authors have expressed the opinion that it may take more than one round of induction of BCG, and that maintenance is critical for resistant CIS. You may well be on your way to good outcome.
My heavy reaction to BCG started with the 4th dose and just get stronger as time goes on. Heavy drugs make the BCG treatments possible for me. I have a spinal cord injury, I'm missing a kidney and have lots of miles on this body. The spasms set me off. I lose 3 to 5 days, and just qualify for the following week's dose, but only if the bleeding has stopped. All this to say, Yes, BCG can be a real problem for some of us, but I'll keep doing it until something works. The gain will be worth the pain.
Don't be a hero with the BCG pain and problems. Write them down and talk to your care team about EVERYTHING. Spill your guts. They can't help you if they don't know what symptoms are happening.
Try to figure out what helps with BCG. I find that peeing while standing is better than sitting. Walking through the heavy spasms is better than lying in bed. A hot towel over the bladder helps. AZO or pyridium does help a bit. Warm liquids help more than cold ones. Use all the hot water for showers. Sleep whenever things lighten up for a few minutes.
Think positive. You are on the recognized treatment. You have a great chance of beating the CIS with BCG. The course is 6 weeks long, and gets shorter with each dose - you know there is an endpoint for the round of 6 treatments. Get your care team on board to help you get through it as easily as possible. There are lots of other options to look to later if needed.
We can beat this cancer.
Best,
Jack