I feel your pain!!! I would sit on the toilet for 8 hours straight and get up every once on a while because my legs and such were a sleep. Then get the fever and chills all night, up every hour to pee. They stopped giving me the BCG. I think I went three rounds total. I am only getting checked every 6 months and all clear so far. He said they have a new drug out, that if I have a reaccurance we can try. I don't remember what it was, but he said it was very expensive. Its been 6 months since my last treatment and I still think I have side effects from the BCG. I'm 46 and feel like I'm a 100 when I wake up in the morning. I used to drink a little to much wine on the weeknds and have stopped drinking all together and don't feel any better. I ride a dirt bike for 5 hours and then I am sore for 4 days.
I hope the best for everyone!!!
My Dr is Bruce Lowe in Portland, OR I really like him.
Bill......you really need an infectious disease specialist...it sure sounds like BCG induced prostatitis or one of those itis
things and only a few drugs will get rid of it. I think you need to get out of Dodge. I personally would not touch anymore BCG with that much pain......and you don't have your test results back after 2 weeks????????????
pat......read warnings and precautions
Nancy, just to help you feel better....my uro has LOTS of patients who drop out before the "recommended" time on BCG. He feels that any is good, more is better, but there is no "bible" that dictates exactly how much is enough. This is all just sort of "what is usually done." You have had 24 exposures and, for all anyone knows, that may be MORE than enough. And sometimes those who go the whole path still end up with a recurrence.
You done good, gal and that is all you can do!!
Sara Anne (who is down to 1/3 and still trying!)
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I also had re-actions to BCG. In fact, it is taking me over a year to get over my last one. (24th) And I do mean last one! My Uro and I both agree that my bladder cannot tolerate any more BCG
So first off: I had reduced to 10% BCG on my last instillation
and still had severe problems. But my bladder already had so much BCG, the 10% meant nothing.
Dr. Lamm also said that he "heats" the BCG for people that can't tolerate it any other way. (My Uro and I agree, we can't even try that)
I did have Ofloxacin after my BCG.
So what do I do now that I know I can't do anymore BCG? I wait, cross my fingers and toes, and hope CIS doesn't return
I will be three years without a re-occurrence in October . So if it comes back - goodbye bladder. Hopefully, the BCG already got rid of all the CIS and it won't come back!
Good Luck - the reduced BCG does help a lot of people on this website. You can go as low as 1% - all you want is for your bladder to react.
I have changed URO's, and he agrees with Dr. Lamm, and is why we are going to try BCG at 10%.
He also sent me to a specialist to try Pelvic PT (new on the scene, and has helped dozens of men in my area) however, after an extensive exam, I was found not to be a candidate for the Pelvic PT.
I will ask for ofloxacin as you suggest.
Additionally, I just read that Dr Lamm does not recommend you as a candidate for BCG if you have bleeding after Cysto's or Cath's (which he says in not normal)which I have had every time (blood mixed with the numbing-jell used for male Pt's), or bleeding "prior" to leaving the office!
I do believe my new URO is trying & wll work with me if I cannot tolerate the BCG at 10%.
Turbt (May 09)
T1 High grade
Began BCG June 09 (every 3-mo for next 2-yrs)