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
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.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Bob-O, I think most here would tell you increasing reactions to BCG are quite the norm. I certainly continue to see this. Only your Doc can advise whether skipping the treatment altogether is OK. For example, my Doc wanted to do treatments # 13,14 and 15 three months after #12. But because of all the arthritic issues I've experienced, I convinced him to hold off another 3 months, so will begin those treatments in April, more in line with recs. of Dr. Lamm.
As for possibilities of an infection, they should be testing your urine EVERY time you go in for a BCG, so that you don't get a treatment with an infection ongoing. Are they doing this? If not, you need to ask why not? Simple procedure...place a strip in the cup and read. If you have an infection, he'll give you antibiotics and delay that last treatment, in all probability.
DX April 2008
TURB April 2008
Last BCG (#15) April 2009
I had this happen to me about 18 months ago. I had a tempature of 100.5,
sore all over, and slight burning while urinating. I took a urine sample to my BCG treatment appointment and was found to have a bladder infection.
So my treatment was delayed by 1 week. I am not saying you have an infection, but I would recommend you get checked before your scheduled treatment.
Any Doc, or Nurse can check this, takes only 3 minutes for results.
If you do not have an infection, I would still call my Uro too see if the treatment should still be done, or delayed until you feel better.
I wish you all the best,
TA Grade 1
30 BCG Treatments
Cancer Free since Nov 2007
I'm tempted to skip my treatment tomorrow or postpone it. My joints and muscles are aching and getting to the bathroom takes a lot of time & energy.
I'm not sure if this a reaction to last week's treatment or not.