Michael,
I too suffered from side-effects that I haven't read too much about on this forum. I have an earlier post listing out the issues I was suffering.
I suggest you look at that post as there were a couple of journal article links posted in a response that provides information regarding the lower dosages and ultimate outcomes (percentages, etc.). The dosage reduction is a pretty standard way to ameliorate the side effects, but is not a guarantee as this is an immuno-therapy and your body may just be maxed out.
I agree - onco docs trend to treat the disease, not the patient
.
I went and saw another urologist after we stopped my treatment to get a consult. She was excellent and we discussed a variety of ways to possibly address the interstitial cystitis. She explained a number of treatment options and left the decision up to me on how to proceed. She also recommended staying with the oncologist for the follow-up cysto's as he has 'been inside' and knows what he is looking at. She told me she has his number on speed dial and would contact him if needs be to ensure I was getting what I need.
I have opted to wait on addressing the cystitis as the symptoms have been steadily resolving themselves (it has taken about 7 weeks since my final BCG instillation). But am thankful to know there are a host of treatments to address the problem.
Thanks for sharing your experience, as I think it helps others to know what the treatment might be like.
Please continue to keep us updated on your journey.
In spirit