I just finished my second maintenance series. After the first, I had a bad case of BCG-cystitis. My uro postponed the second for a week until the burning ceased and then did the second at half-dose. I had a terrible time with that one...lots of bleeding and discomfort. I was going to quit. Then I listened to this lecture
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www.urotoday.com/media/presentations/wuf2009/WUF_Wood_TenTipsInTheManagementOfNonInvasiveBladderCancer_03_12_09/player.html
and the statistics convinced me to continue. Had the third on Thursday, half dose, with minimal problems.
The chances of reoccurance are so much less with the mainenance treatments..I decided that this was much better than the alternative.
If you are still having symptoms, ask if you shouldn't delay the treatment a week. And I can't believe that your doctor isn't monitoring for infection/blood in the urine before each treatment...don't they greet you with that cute little cup? No uro would administer BCG if there was any chance of an infection present.
My advice is to hang in there. My uro warned me at the start that it would get harder as your immune system builds up a reaction to the BCG...and that this shows that it is working!!
I have friends who have had conventional chemo for other types of cancer, and every time I start to complain about BCG I think of the HORRIBLE side effects that they had. We are much better off.
Sara Anne
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