My husband had a really bad reaction. Mito was instilled after a TURB. He a month worth of painful urination, visible blood in his urine, a full feeling sensation below his belt line that made him extremely uncomfortable and frequency and urgency that was out of control. He didn't sleep more than two hours at a time for 4 weeks. He constantly felt the urge to go and sometimes it was a false alarm and other times he urinated before he could get to the bathroom. It was very humiliating to him because it happened twice on a job site. I felt so sorry for him.
His doctor said he had a severe reaction and they will not use it again for him. It is the only Allergy listed on his medical records.
Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto - TURBT 4/26/2013
Kidney pain - CT scan 5/1/2013
Hi Dave, I have only had the MMC after each of my two turbs and one biopsy with no problems. My next look is in two weeks. After my last look the dr recommended I let the bladder heal for three months with no treatment which has me worried. My last cysto revealed negative results for the cytology and biopsy. However for the one in April/May, 2 cytology tests, 1 fish test and 5 patholigist looking at two biopsy samples were negative, one pathologist noted focal CIS. So if it did come back as CIS, I have not had any treatment for the past three months, however I can say by letting the bladder heal, I have no problems at all now with urgency, burning etc. I don't even wake up during the night.
Since the positive FISH back in Feb I've had a couple of cystos and two TUBT's (one in March, another in June) and no CIS observed, just abnormal cells (dysplasia). Are you at MD Anderson in Houston? What treatment are you having? Cystectomy or TURBT? BTW I am in Houston and my Uro practices at Houston Metro Urology.
Thanks for the hint on reduced BCG dosage. I'll mention it to my Uro. He was absolutely sure that I would have no problems with MMC so maybe its work a shot. Right now everything is on hold, waiting for the inflammation to subside.
Back in April of this year, I was treated with 8 weeks of Mitomycin C. To say I had no reactions would not be correct, but nothing like you experienced. I had the normal burning and some minor bleeding from the invasive procedure. I would also experience some fatigue for about 48 hours after the treatment and became more pronounced with each treatment. It is my opinion, that the majority of people that have posted here that have taken Mitomycin versus the BCG, Mitomycin has the lesser side effects. In saying that, I’m not sure of the success rate of one over the other. However, it seems like that BCG seems to be the cocktail of choice for more Urologist/Oncologist. Good luck.
dx - Aug 2005
Five reoccurences (last 12/09 Ta high grade)
BCG Started 10/09 (2 6wk treatment)
BCG Maintenance started 4/10
11 years 4 months ago - 11 years 4 months ago#21423by beglin99
You bet I had a problem with Mitomycin... I tolerated 5 treatments of a scheduled 6, but the burning was really killing me so my Uro agreed to skip #6. Six months later we tried 3 more treatments, but I could only tolerate 2. The good news is that was in May 2007 and my last 4 cystos have been clean. Last "Low grade papillary urothelial carcinoma" was in Sept of 2006.
Retired USAF Col, father of 4, grandfather of 9, greatgrandfather of one.. Enjoying life to the max...