How are You Doing?

[Boterf]

I was wondering how the people who have had the BCG treatments are doing. I find the studies very interesting. Would you do it again? Thanks for any replies.

[ICNAsstMgrDiane]

I had BCG done twice. The first time put me in a total remission for 7 months, than I got a terrible bladder infection that lasted 4 months. The infection actually ate away at the bladder lining and destroyed all that I had accomplished. As soon as the infection was gone, I decided to do another set of treatments. My last treatment was August of 99. I have been doing great. If I didn't have nerve damage in my bladder caused by the chronic infections I know that I would not even know that I have a bladder.

I do however, instill heparin everynight, as a precautionary measure to help protect the new bladder lining. I do not want an infection to eat away what I have accomplished already.

I urinate only about 6 times a day, and get up sometimes once a night.

When I had my cysto after the BCG, my report said "Diane, your bladder looks great, I see no traces of IC"

Diane

[This message has been edited by ICNAsstMgrDiane (edited 11-10-2000).]

[Debra]

I had the BCG treatments done from February-April, 2000. I'm really not sure if they have helped -- up until about a month ago, I would say that they hadn't -- in fact, it seemed as if things were worse than before. However, right now I am doing very well, except that I keep getting bladder infections (the symptoms of which I end up confusing with an IC flare), which I never used to get..I don't know why all of a sudden. I also started taking Ditropan XL a month ago, which seems to be doing me very well -- much less frequency and almost no pain. Since the Ditropan (I don't think) should really help the pain too much (except pain resulting from so much peeing), maybe I'm finally seeing BCG results that are helping with pain. I guess the real test would be to go off the Ditropan for a bit and see what happens...but I don't want to do that!

So, in my mind at least, the jury is still out on the BCG. I can say that I probably (at least at this point) would not choose to do it again, because the ends were not worth the means in my case. But, it all remains to be seen.

Sorry if I confused you...I think this is just another testament to everyone having a different experience with every treatment! My experience with BCG was much different, both in the process and the outcome, from Diane's.

Debra