Some of you may have seen my posts last week about having a reaction to the BCG. High fever, light-headed (blood pressure drop), starting on Cipro, etc.
I went in today for a follow up with my Uro and he said it was a reaction and not a side effect. Switched me to mitamycin (MMC) instillations. Didn't have much info at his office on it so I've been trying to find research online. Seems everybody wants a paid subscription for information on this treatment.
I'm really bummed. I was feeling very positive about the statistics on bcg treatments. From what I've found so far the results are not nearly as good as bcg but if bcg will kill me next time, I'd rather avoid that option as well.
Dr. Lamm responded to an email I sent via his website that it's possible I could take bcg at reduced strength in combination with cipro. This is really confusing because cipro reduces the effect of bcg PLUS have a reduced dose to begin with... I wonder if there is any point in even trying it. Even Lamm's studies show that strength is important so if I took a super reduced 1/10 or 1/30th then what chart should I be looking at for efficacy? Lamm did say it was quite rare to get my reaction after only the 2nd dose so I guess I'm in that unlucky group statistically.
Anybody have some good information on mitomycin, experience with it, or general advice?
Did I mention already I'm bummed? I was hoping today was a visit to the Uro where we just talk about things and I'd get to keep my pants on. Wound up getting the MMC though after a good bit of discussion.
I can tell you it was WAY better than either of my BCG treatments. No chlorine, no burning, no spasms, no fever, no chills. I just need to see some information that demonstrates that is not also "no good"!
I had ONLY CIS (2cm) with no other tumors. As far as we know, the Uro got it all when he did the TUR (we had clean margins).
One study I found on MMC said don't do it if there wasn't some cancer present "The use of chemotherapy in the absence of existing malignancy should be avoided. Animal studies have demonstrated that repeated instillation of thiotepa, doxorubicin, or mitomycin C can induce hyperplasia, dysplasia, carcinoma in situ, and even, in the case of mitomycin C, invasive transitional cell carcinoma (Friedman, Mooppan, Rosen, & Kim, 1991)." This is kind of scary!!!!
Has any study been done since then that indicates getting 6 instillations of MMC when no cancer is evident is going to help me at all and not wind up causing me to get it again?
dx CIS 11/3/06
last cigarette 11/4/06
bcg dropout 12/15/06 after 2 treatments.