Thanks Sara Anne, for your response, your promptness, and the pointer to Dr. Lamm.
It turned out, my urologist and I were able to get on the same page with respect to treatment schedule. However, I wasn't able to get him to agree to more frequent urine tests. It seems to me, nothing lost, but he wants to follow standard protocol.
My biopsy results were positive. But since I have not shown progression in the three years since initial diagnosis, my urologist is recommending a repeat induction of BCG/IFN, with possible future use of other intravesical treatment types.
With RC waiting in the wings, I decided to go to see Dr. Guido Dalbagni at Memorial Sloan Kettering, NYC. Based on his publications and bio, he heads assorted trials of alternative intravesical treatments for BCG-refractory cases.
I'm not eager to engage in out-of-town treatment, but I'd consider it if I felt it were significantly superior than what I could get at home in Boston.
So sorry to hear about your issues. I am one of the lucky ones where, so far, BCG worked for CIS.
There really is no "authoritative" schedule for BCG. Most studies have shown that the initial period plus a maintenance period is the most effective. The dosages used as well as the various protocols have arisen from practice, not from real research. And what research has been done has not shown a real difference, beyond the demonstrated effectiveness of using a maintenance regimen.
I assume that you have probably run into the name Dr. Donald Lamm.....he is one of the more recent pioneers in BCG therapy. Here is his web site:
My urologist did not use Dr. Lamm's exact protocol, but it does make interesting reading. As for the addition of interferon, I don't know much about those protocols.
Wishing you the best in your exam!!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Can anyone tell me if there is an authoritative site from which I can print out a schedule of BCG treatments to show my urologist?
Would the schedule be the same for BCG with Interferon (IFN)?
If there are differences in provider opinion as to maintenance schedules, I'd like to take a more intensive approach as I have had little to no side effects. But, I need to make the case to my urologist.
I have high grade papillary urothelial carcinoma/CIS. I failed BCG-alone treatments that ran two years, with either 6-instillation induction treatments or 3-instillation maintenance treatments every 6 mos. Last December, I received a 6-instillation induction series of BCG with Interferon and then had a 3-instillation maintenance round in March. My January cystoscopy/biopsy was negative. I'm going in for a cystoscopy/biopsy tomorrow.
I've found no schedule information on BCG/IFN. For BCG alone, I see that Sara Anne says the maintenance treatment schedule is every 3 mos for 2 yrs. The only other schedule specification I was able to find says: "3, 6, 12, 18, 24, 30 and 36 months from initiation of induction therapy."(1) My urologist says 3, 9, 15, 21, 27 mos.
Thank you in advance to Sara Anne for her statement which I will present as well.
Thanks to everyone as well.
(1) http://www.ncbi.nlm.nih.gov/pubmed/10737480, Journal of Urology, April 2000, and an article that references it as the gold standard in the International Brazilian Journal of Urology, Nov-Dec 2009, at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4273309/#R30