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Question on percentages.

12 years 5 months ago #40005 by sara.anne
Replied by sara.anne on topic Question on percentages.
I will just chime in here with an echo. For CIS, BCG is the treatment of choice. While some people do have severe reactions to it, most of us survived just fine. There is a LOT of information on this web site, and Mike gave you a link for Dr. Lamm's information, so you will be well-prepared!

Lots of questions for your second opinion!!!

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

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12 years 5 months ago #39993 by mmc
Replied by mmc on topic Question on percentages.
Anita,

Since you post about 99.99995% of the posts, I think it may be time to consider actually having your very own username. :) You can even use your own picture.

Mike (Liz's husband)
:D



Besides, if we have two people sharing one login name, it looks like we have less people than we actually do. We want those stats on the website to accurately reflect the number of users we really have. :)
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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12 years 5 months ago #39992 by mmc
Replied by mmc on topic Question on percentages.
Inland1der,

I had CIS initially and did a few BCG treatments. I had severe reactions and was taken off of it. It is the best thing going for dealing with CIS. Since I had problems, the second best option was mitomycin.

Mine came back a couple years later and I needed to get my bladder removed but that sounds like a much bigger deal than it actually has been for me.

Bladder cancer has a very high recurrence rate and the BCG treatment needs follow up courses. It has a very high success rate of keeping the bladder cancer from coming back (as long as one follows the maintenance dose protocol).

Here is a website link to the site of the leading authority on BCG. www.bcgoncology.com/treatment/bcgInst.html . Hunt around at that site for lots of good information from Dr. Lamm.

Talk to your 2nd opinion bladder cancer specialist about the dose strength. According to Dr. Lamm's research it seems that a lower dose can reduce the probability of having problems with BCG without losing any efficacy.

Best of luck in your treatment. Ask anything and everything. Lots of us here have been where you are now.

BTW: I just celebrated my 3 year cancer free milestone. My first time with bladder cancer was in 2006. This thing is not going to get you!

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...

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12 years 5 months ago #39988 by DougG
Replied by DougG on topic Question on percentages.
Doug has also had Mitomycin-C, which is administered in much the same was as BCG. BCG has a higher success rate.

Your questions would be very good ones to ask at your second opinion appointment. Please let us know how your doctor responds.

In the meantime, I did find this on one website...Bacillus Calmette-Guérin (BCG) is the most common intravesical agent used to treat carcinoma in situ (CIS). Approximately 70% of patients have an initial response to BCG vaccine. Rates of tumor progression vary according to the particular study, but more than 75% of patients who initially have a complete response remain disease free for more than 5 years. This is equivalent to 45-50% of those who initially respond. At 10 years, approximately 30% of patients with CIS who are treated with BCG are disease free.

Best wishes to you! Just to let you know, Doug was first diagnosed in May, 2001 and his has not gone past non-invasive.

Please join us Sunday night at 8 PM EST on the chat if you have other questions or just want to talk.

Anita (Doug's wife)
Anita
Forum Moderator
Caregiver

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12 years 5 months ago #39987 by inland1der
Question on percentages. was created by inland1der
While waiting for my second opinion appointment this coming Monday, I was looking over the information packet my primary uro gave me, and it says that the general success rate with the BCG therapy is 71%. I would like to ask anyone who has been through this, what "success" means? Cure, total remission, certain amount of years longevity after discovery of disease? It seems like a very vague term to me. I've got to believe it's better than the alternative without treatment. Confused, baffled, scared. Just trying to gather as much honest info that I can. Has anyone "in situ" done anything other than the bcg treatment? Thanks
I have really gained some insight into this disease and appreciate the support all who who have responded to my queries have given. Thank you

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