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7 years 7 months ago #37630 by mmc
There's some bad doctors out there. We just don't talk about them and instead we try to get people to go the really, really good ones.

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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7 years 7 months ago #37628 by dieseldoc
Thanks all. I guess it's up to the doctor.
I haven't heard about any really bad doctors on here, just some that know more about it than others. :unsure: :huh:

T1,NO,MO battling bladder cancer since 2005

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7 years 7 months ago #37627 by Markq
After induction BCG my Uro pretty much left the question of maintance up to me. He said if I had CIS he would suggest maintance. In his experience he said less that half of his patientce complete maintance. I don't have CIS, but I do have high grade. I decided to go with maintance for the reasons Sara Anne stated. I'm going to try to follow Dr. Lamm's propocol at least for a while and hope for the best.

47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.

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7 years 7 months ago #37618 by sara.anne
I do know of people whose uro only prescribes the "basic 6." However, there have been studies ...don't have the references now...which show that a maintenance regimen improves the disease-free time SIGNIFICANTLY. I understand that BCG is most effective with CIS.

I had CIS with papillary. Had the initial six weeks of BCG and then every four months had three once-a-week instillations. By the time we finished, my dose was down to 1/3 of the initial. This is not exactly Dr. Lamm's protocol, but close.

Go to Dr. Lamm's website
http://www.bcgoncology.com/drlamm/
and also read the "common questions" page
for a good overview.

BCG was not fun, but I am very glad that I did it. So far, so good.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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7 years 7 months ago #37610 by Nix
I can't speak for anyone else, but once I started BCG (4 yrs ago) I haven't had a re-occurrence. Total 24 BCG's, and so far so good. If there is another CIS re-occurrence, I don't think I can do any more, because near the end I had a lot of problems with BCG.
I did have CIS, but it was caught very early. Maybe that made a difference?
I guess every doctor and every patient is different. Did you get second opinions from other doctors?

Nancy

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

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7 years 7 months ago - 7 years 7 months ago #37608 by mmc
Yeah. BCG can be tricky. Doesn't work on everyone and there are different categories of BCG failure. Failure can be that it produces no reaction all the way up to it produces too much of a reaction.

Seems to work best on CIS. But not for my CIS. I was in the severe reaction group.

Questionable on low grade from what I've read.
You just never know...

If you keep having recurrences, mitomycin may be something to talk to your doctor about.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

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