BCG re-start!

10 years 10 months ago #32928 by Bill Jr
BCG re-start! was created by Bill Jr
As you know I refused any more BCG treatments last September, due to unbearable pain and heavy bleeding after 9-treatments (even at a 30% dose)!

After my last Cysto my URO said all clear, BUT, you MUST restart your BCG treatments.

So July 14 I restart, 1-per wk, for 3-wks, every 3-mo for 18-mo. At the end of 18-mo we'll look at another schedule. OH! We are going to try a 10% dose this time, although research has shown me that there is a very, very small group of folks that cannot tolerate BCG.

If I find I cannnot tolerate BCG at all, then I wonder what's next!

My prostate has been painful since the BCG's last year, si I fear the restart is really going to be a challenge!

62
Turbt (May 09)
T1 High grade
Began BCG June 09 (every 3-mo for next 2-yrs)

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10 years 10 months ago #32930 by Patricia
Replied by Patricia on topic BCG re-start!
Have you thought about switching Uro's.???? GEez..just asking for trouble huh?
The french have come up with a way to administer BCG
Bacille Calmette-Guérin (BCG) in intravesical instillations is the reference treatment for urothelial carcinoma with a high risk of progression. Compliance with this treatment is altered by its potentially serious locoregional or general side effects. Prevention of these complications requires implementing rules of good practice for the instillations. The undesirable side effects should be recognized early. Their treatment should be rapid and adapted to the patient. The results of the French randomized, placebo-controlled ITB01 study showed that the class II side effects of BCG were significantly reduced by administration of ofloxacin after each instillation of BCG. The number of class III side effects requiring antitubercular treatment was also reduced in the patients in this study who had received ofloxacin.
How about asking Dr. Lamm? He knows everything...
www.bcgoncology.com/drlamm/askdrlamm.html

pat

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10 years 10 months ago #32937 by Bill Jr
Replied by Bill Jr on topic BCG re-start!
Pat,

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%.

62
Turbt (May 09)
T1 High grade
Began BCG June 09 (every 3-mo for next 2-yrs)

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10 years 10 months ago #32943 by Nix
Replied by Nix on topic BCG re-start!
Bill,
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 :woohoo:
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 :ohmy:
I will be three years without a re-occurrence in October :laugh: . 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.
Nancy

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

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10 years 10 months ago #32957 by sara.anne
Replied by sara.anne on topic BCG re-start!
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
Forum Moderator

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10 years 10 months ago #32959 by Bill Jr
Replied by Bill Jr on topic BCG re-start!
Well Damn!

Last night, I thought that as usual, my prostate was giving me a fit, as per usual since BCG #6 out of 9, followed by 5-mo of antibiotics, w/no relief in pain!

Then, last night, some "pink-water"! Oh, damn! What nexT? One episode, then all normal??? No pain on voiding, no temp, no nothing else!

Had a PSA (been climbing over 18-mo {no BCG since 9/09}), Platelet & WBCC 2-wks ago, w/no results yet???? I have been getting more tired by the week and brusing is a real problem???

We all have limits, and our limits are different for each of us, and I am about at the limit of mine!

BCG #10 is Thursday July 14th, @ 10%, if the pain & bleeding is as bad as #9, then I guit!

62
Turbt (May 09)
T1 High grade
Began BCG June 09 (every 3-mo for next 2-yrs)

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