Clear Cysto and Chat with Urologist

Wendy,

I think that my doctor was talking about the bleeding and burning, not the arthritic reaction. I told the Doctor how bad the bleeding and burning was with the last treatment and that is when he said about the reduced dosage not making a difference. He looked back on my chart to check for the amount of blood at the time of administration and he didn't see anything to make him believe that I might have had infection to cause such intense irritation, so then, we talked about whether I needed maintenance, I told him I didn't want it and I asked if he was comfortable with that, and he said that he was.

However, I'm not all that sure that the reduced dosage helped with lessening the arthritic response either.

I shouldn't have brought it up because some people on this board seem to think that me talking about my experience frightens people, but, it is my experience and unfortunately it is what it is.

Not everyone, and more than likely, not anyone will have the same response that I had.

I seem to be in the .01% that is not going to get along with BCG's.

Thanks for your post,
Rosemary

Dear Rosemary,

Please accept my belated congratulations for your clean follow up! Yes.

About Mitomycin causing a death, I don't know what happened in the USA (if that is where it happened) but in Holland a person died after a post-TUR shot of mito because there was an inadvertent perforation in the bladder that was undetected, and the drug went into the bloodstread and was too toxic. The use of Mito or any drug post-TUR cannot be instilled in case of deep TURs or suspicion of perforation.

I was surprised to read in another post of your that your doctor said to expect bad reactions even to lowered doses of BCG, because of your past experiences with it.

I thought that was the rationale for lowering the dose-to lessen the side effects, too (but with the same efficacy).

Lamm says that continued side effects are a sign the immune system is in overdrive (maybe) and that no more BCG should be given until all side effects from the previous dose are gone. Side effects don't equal better effectiveness (unfortunately).

Here's hoping you never need another treatment!
Best wishes,
Wendy

Rosemary,

What wonderful news!!! I was praying for you today! Hope my mom gets such wonderful news tomorrow -- I will let you know.

Kim

Thanks to you both for your support and encouragement.

Linda,

I've had bleeding for years and years that I always assumed was vaginal. To this day, I do not know if the blood that appeared in my toilet for years on urination was a huge signal of the large tumor that was growing in my bladder. I was diagnosed January 2006, had two TURB's with Mitomycin, and then 12 subsequent BCG treatments. I've had no recurrances.

I did ask my doctor today if he was comfortable with discontinuing the BCG's and he said that he was comfortable with that.

Thanks again to you all,
Your BC friend,
Rosemary

Nice Work, Rosemary! I really am sooooo Happy and so Pleased of your results.

I can't wait to hear the same words hopefully some day soon myself.

Thank you so much for letting us all know.

One of your followers

Alice

ROSEMARY,

I AM SO GLAD TO HEAR OF YOUR GOOD NEWS! CONGRATULATIONS!!

IF I MAY ASK, HOW LONG DID YOU HAVE BLADDER PROBLEMS AND HOW MANY TREATMENTS OF BCG????

MYSTIC (LINDA)