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Diagnosed, removed, waiting on biopsy report

5 years 9 months ago #44353 by Nix
No, we tried lowering the dose about the 19th, but my bladder had enough of BCG, so we stopped there. Bad news, I really wanted to get to 30, good news I haven't had a re-occurrence in 5 1/2 years. My bladder is completely healed, so my Uro feels if need be in the future we could still go back to BCG.


Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
The following user(s) said Thank You: shihtzudaddy

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5 years 9 months ago #44346 by shihtzudaddy
Nix - so what happened after you had the 24th treatment? Did they just go to a lower dose of BCG

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5 years 9 months ago #44342 by Nix
Everyone's bladder tolerance is different. Since BCG is a cumulative, increasing by successive instillations as you progress through treatment. So having a severe reaction now and not during the first six is not. However, some patients can not tolerate BCG at all. This is a conversation you have to have with your Uro.
As was said earlier, you can cut the dose of BCG to 50%, 33%, 25% and Dr Lamm said, all the way down to 10%. This is another conversation to have with your doctor.
Your Uro is absolutely right not to give BCG while there is bleeding. It is not safe!
I can feel Toby's pain :sick: I had big reactions to BCG,(spasms, bleeding, pain) but I was lucky enough to get through 24 instillations
before that happened.

Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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5 years 9 months ago #44341 by shihtzudaddy
Sara
If he could not tolerate the BCG what we would see? Would it be that he just couldn't stop having this type of bleeding? He did well in the bleeding respect during the first 6. The urologist said they will skip this dose from the past Wed (and BTY it was March 6 not Feb 6) and see how he is doing by next Wed March 13.

I guess I felt it was a good sign the blood is coming out because I felt it showed BCG WAS working. Or is that an indication it may not be working for him?

There are so many variables and so hard to know what is good verses bad.

We both appreciate ALL of you. Without this forum and the honest, true 'confessions' it would be so difficult to trust information on the internet.
Kathy & Toby

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5 years 9 months ago #44338 by sara.anne
It is the bladder lining in general that is reacting to the BCG, not just cancerous areas. The entire area is having its immune response kicked up. The urologist can reduce the BCG even more; Dr. Lammn, the "expert" in the area, sometimes uses 1/10th the original dose. The fact that he IS having a reaction does mean that the stuff is working. However, too much is too much!!

Some people cannot tolerate this treatment, which is unfortunate, since the alternatives are not as effective.

Please share your concerns with your urologist.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 9 months ago #44337 by CatherineH
Glad to hear about the good checkup. I'm so sorry he is having so much pain with this last treatment cycle. I know that is discouraging to you both.

Maybe at this point, 1/2 strength is still too strong. I think others have reported using down to 1/3 after having issues. I understand your worry. I hope things clear up soon.

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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