Hello - this is a follow up to an earlier question which was - if the initial round of 6 treatments for CIS seemed to work (clear cysto) and caused no negative side effects is it better, in the maintenance rounds, to stay with the full dosage or cut it back to 1/3 per Dr. Lamm's protocol. Besides the mixed responses I got here, Dr. Lamm himself answered my question by stating in effect to go with the reduced dosage because there seems to be no loss in efficacy and because it will slow the cumulative progression of the negative side effects over the course of this lifetime battle and for which BCG is the best treatment.
Now the problem is that my uro, who had indicated that he followed the SWOG (Lamm) protocol for BCG treatments believes in the Full dosage for maintenance....because he interprets the protocol to mean it's all or nothing when it comes to BCG. This didn't sound like a strong reason to me and I need to pursue that further. Dang! I was hoping I wouldn't get between the rock and a hard place, but I am. I plan to talk to both Dr. Lamm and my uro and maybe have them talk with each other. But what I'd like to hear from people here is - are there examples of negative side effects lessening when dosage was reduced? Are there examples of recurrence when dosage was reduced? Are there examples of no recurrence when dosage was reduced? Obviously there's no point in asking if a reduced dosage delayed the onset of strong side effects - but these other answers might help point the way. Do most people even ask what dosage they are getting in BCG maintenance? If I hadn't asked, I don't think they would have mentioned it. I guess sorting this out is part of what they mean by "vigilance". best, Brewster
