I had a bad reaction after the 4th MMC instilation. Had reaction after number 2 bcg. Similar to you I stopped after 4th MMC. That was a year ago
Now I am at MD Anderson because it came back.
BTW, you say you had postive fish but no CIS? How do you know there is no CIS? You can't see it often times.
I had postive cytologies and positive FISH in bladder and both kidneys. Nothing shows up on any types of scans and the only cysto that anything showed up was on Friday. The week before, nothing showed in the cysto! CIS is agressive. Don't ignore positive FISH. Could be early warning. Don't wait 3 months for next cysto. Don't want to scare you but it is best to be conservative with this CIS stuff.
David - I had a MMC treatment after a TURB and thereafter experienced a month's worth of problems similar to yours. Subsequently, I underwent a standard course of BCG treatments, except at half the usual dose. My uro decided on the reduced dosage because of my history as a PPD converter (reaction to TB skin test) and my apparently sensitive bladder. I had no problems tolerating the BCG at the reduced dosage. Perhaps this approach would work in your case.
You poor guy! You must have a vey sensitive bladder. I developed urethritis from the Mitomycin C, but I'm sure that was because of a traumatic catheterization during one of the treatments. Other than that, the only reaction I had was a rash on my hands. I did have some degree of bladder irritability after the treatments, but I tend to get that just from instrumentation anyway. And I passed a kidney stone in the middle of the treatments, but I don't think that was in any way related to the treatment.
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...
Has anyone out there had problems with Mitomycin C? My doc tried BCG last summer with absolutely disastrous results --- bleeding, blisters, almost destroyed the bladder. When things settled down (in the meantime I've had a total of 5 TURBT and a lot more cystos over the past eighteen months) he wanted to try a round of Mitomycin C which he believes is much milder with almost no problems with bad side affects. The first treatment was on Thursday, Sep 11 and the second was yesterday, Sep 19. At first I had no reaction whatsoever, then after about the fourth day some blood -- very minor traces, then some clear matter - maybe tissue or mucous? However, following yesterday's treatment, I've had severe burning, lots of blood, more mucuous blobs and about the worst urgency incontinence I've ever had ( I was completely off all overactive bladder drugs for the past six months!). I have four more MMC treatments scheduled but at this point I'm thinking I should stop at two.
So far there has been no recurrence of the CIS which was removed via TURBT in March of last year but I've had four more TURBT's to remove papillary tumors and to take biopsies of irregular cells which have been dx as dysplasia. I did have a positive FISH test back in Feb of this year but so far no CIS or anything.
Has anyone else out there experienced this type of reaction to Mitomycin C?