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Analyzing Results Of BCG

1 year 10 months ago #52741 by Alan
While CIS and papillary are different, from what I have read CIS actually responds better than papillary. Mine was caught early per the small size (just one stalk) and just getting started. There are a few well respected doctors that have done just 6 treatments and that is it. Maintenance or something extra for sure is where I would be. My URO actually either interned or was a resident under Dr, Lamm some 30-40 years ago when he was in San Antonio. For me, he may have "customized" what he did because of the size and early detection. Also, any invasive test: cystoscopy, CT scan, BCG treatment all incur some small risks, to where either his skill cutting my tumor out plus the good chance BCG worked also, he did the 6 BCG, a wait and check and 6 more and said stop. I then did a year of every 3 months cystoscopes, then he took me to 6 months for a year and then only with my blessing he took me to yearly. Again, because every case is different, mine was small and caught early. I am not sure this is good for the majority of cases. He said don't subject myself to any more than I need to. I also do a cytology opposite 6 months from my annual physical as another non invasive test.

Sorry, I didn't mean to write a book but, I am anticipating some of what if's etc you may have. I trust and feel you will beat this and someday be another helper to someone else!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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1 year 10 months ago #52739 by Mistersac
Thanks Alan, how does your original diagnosis compare with CIS? Am I correct in the fact that you had 2 series of BCG and that cleared it up. Hit them long and straight.

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1 year 10 months ago #52738 by Alan
Mistersac, Jack and Cynthia have given great observations! The good news is that BCG works for the majority of us. Heck, after almost 9 years out I still have that monkey in the back of my mind also however: life is still one day at a time. Chances are very good that something else will end our journey (the turnip truck to poke fun at myself)! I play 150+ rounds a year so it is good to chat with a golfer. My advice, go out and enjoy soon!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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1 year 10 months ago #52737 by Jack R
Mistersac,

I uploaded a recent file that compares BCG treatment protocols and results over the long and short term. Keep in mind that all published articles have limitations and exceptions. Newer treatment options, often with great promise for a small sample, don't have a compelling track record, while options with a longer history often trend to an average value.

I find the results documented for TCC treatment using Dr. Lamm progran, including BCG protocol to be very appealing. My own TCC remains at a standoff with BCG at 18 months and 22 doses of BCG. It is again time to consider what to do next - continue BCG or try some other (newer) approach which will be lacking in documented results.

Go to the ARTICLES of INTEREST category and near the top of the list you will find the article titled, "Consensus statement - best practices using BCG for bladder cancer. 2015". The first set of graph tell much of the story.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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1 year 10 months ago #52736 by Mistersac
I know you are right. My wife tells me I dwell too much, but this came out of the blue in November, and although I am 70 I exercise 4 days a week, and I played 80 rounds of golf last year. My biggest fear is that I won't be able to live an active life. I guess it is in God's hands, and I have to accept that.

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1 year 10 months ago #52735 by Cynthia
I would suggest taking this a step at a time. Worrying about what may not happen is a waste of energy save your fire for known facts. Wait and see what your next check finds, I know it is hard but you are not going to change a thing worrying about it. I know this as a fact from personal experience.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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