Hopefully you'll never need the mitomycin C, but if you do, just as you've encouraged so many to go elsewhere for a second opinion, if you need it, don't let your uro's limitations guide your therapy. Go somewhere where they administer the mitomycin C.
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...
Patricia - We're in Oklahoma. My mother isn't new to Mitomycin as this is her 4th round. Her doctor has stated that this time they've had to search far and wide, and finally found it in a Florida pharmacy. Other sources (pharmacies, urologists) have been dry. They don't know why and they can't find anyone that knows why. I'll ask them if they've tried going straight to the drug maker.
Rosemary - My mother cannot tolerate BCG either. She had a severe reaction, one of the few that fall into the 4% that will have a systemic reaction. I believe that there were a lot of factors at play that contributed to her reaction. She can never have it again.
Thanks to both of you for taking the time to respond.
11 years 10 months ago - 11 years 10 months ago#20888by Rosemary
Well, I'll be having trouble getting Mitomycin if I ever need it.
My Urology Clinic (at my last chat with Urologist) has discontinued usage of Mitomycin C because of a death from toxicity when Mitomycin was administered on a perforated bladder.
Like I told my Rheumologist yesterday, I'm between a rock and a hard place if I ever have recurrance. I can't tolerate BCG and my Doc doesn't administer Mitomycin...
Sorry, I'm on a tangent.....
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006