Thank you for your replies. I am feeling better today and feel lke hanging in there. It's good to know the Mayo clinic was not bothered. I live in a small town with only unoe Urology clinic. I go back to the Uro late January-I am making a list of all the various side efects after each ttreatment to discuss with him.
So sorry about the pain and hematuria: I know firsthand what you are experiencing, and it can be enough to drive you crazy. Trust me, it WILL subside over time. I used a lot of Ibuprofen to ease the pain but the downside is that the anti-inflammatory drugs like Advil can cause bleeding. The anti-spasmodics like Prosed didn't seem to help a lot -- maybe for a few hours but they also have side effects (constipation!)
My uro said I had the absolute worst reaction to both BCG and Mitomycin he had ever seen, but over time (and by that I mean 6 months) it gradually improved. Mike's comment about asking about reduced dosage of BCG is definitely worth looking into but I would counsel waiting until things settle down first.
I had that extreme hematuria 30 days after a turb, it lasted for about two weeks, we're talking very red and large clumps as well. I started BCG shortly after that episode, and the MAYO docs didn't seem to think it was a concern. Stay Thirsty my friend: lots of water!
Sorry to hear about your troubles with BCG. Hope things get better for you. You should let the doctor know about your reactions to the treatment. I don't know what strength BCG they are giving but you may want to discuss reducing the strength if possible. It could help.
Best of luck to you and here's hoping that 2010 is a GOOD YEAR!
I went through 2 years of BCG treatments finsihing over 2 years. when the little tumours showed back up at my regualr check up in Ocotber. Had the Turbo-2 small surface tumors removed. THen the Myo.... immediatly afterwards. And now I just finsihed my 6th BCG Treatment and ready for a break. The first rounds 2 years ago were not truly bad but this has been very bad. Each one had gotten progressivley worse even though we have cut back to 1/3. Last night was extreme hematuria. I thought about calling the doctor. I don't know if I can continue this again. But don't know think i have other options. My bladder has not felt normal since the Turbo was done. I guess I just needed to vent. Not the sort of thing to talk about in polite conversation.
This thread is very timely for me, as I have had many of these described symptoms since my 12th BCG about a month ago. I exercise, but its not fun, and try to stick to my usual routine, but the docs don't seem to concerned as I don't have an infection. After reading everyone's notes on this, I will count on Time and Patience for things to improve. Thanks for the knowledge.