If you are not happy with going the MMC route, perhaps you could discuss other things out there, like the BCG+IFN protocol. Are you near a major cancer center? Maybe there'd be a good clinical trial for you with something cutting edge...like Urocidin. And I'd love for anyone who'd has a CIS dx to be able to get the fluorescent cysto stuff, it's so much better than regular cystoscopy for CIS, it seems unethical that it's not standard procedure yet, but it's still in phase III trials in the US.
I've heard that people sensitive to BCG can get the BCG+IFN combo without trouble. That may not hold true for you..plus that treatment is hard to get sometimes due to the expense etc etc.
Yes, I've read the webcafe information you referenced and other things I could find through google searches. Many of the them are links to sites that require a subscription and are really for doctors. I've asked my Uro's office folks to see if they can get me more information on research.
To your question on my original dx, it was CIS. I was having repeated UTI's, microhematuria, and some pain in the bladder area. The Uro did a cysto and saw a reddish spot about 2cm x 1cm. On Oct 31/06 he did a TUR and it was determined to be CIS. No other tumors anywhere were found.
I'm sorry to hear about your ongoing problems. I'm in Europe and there's been a debate going on for many years with European experts declaring that MMC is just as good for bladder cancer as BCG, except that BCG clearly is superior with CIS (carcinoma in situ) if maintenance is used.
There is a big load of info about the usefulness of MMC. There are very studies discussing the fact that it (and all chemos) are carcinogenic as well. The study you quote makes a lot of sense, saying that the risks have to balance with the benefit. That same logic holds true for any medical treatment out there.
Yes, I did speak with him about reduced dosage. I was already on 1/2 strength doses. His concern was that a further reduction of dose wouldn't really be good enough vs the risk of sepsis for me. Since I had the light-headedness (to the point of almost passing out) and some rash (even from the first treatment) and the high fever for almost 48hrs even with antibiotics and acitominophen my risk of a worse reaction the next time was just too high. Even Dr. Lamm said it's rare to have the problems I had on only the 2nd dose and that I appear to be quite sensitive to BCG.
In fact, I agree with my Uro but it was just a real dissappointment because BCG has such a good track record for CIS. Studies say that those who got a fever from it had an even lower recurrence rate. Hopefully, I'm just SO sensitive to it that it did the trick for now. Of course, I don't get to do maintenance doses.
Going to go back for biopsy again in late January so hopefully, I'm still clear. Started on Oncovite today and that has shown some good statistics.
I'm really interested in finding some statistical information on the efficacy of Mitomycin for CIS. If anybody comes across some good data, please let me know.