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Bad Reaction to Mitomycin C

3 years 9 months ago #48326 by Marble68

TheWifeAgain wrote: 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.


I know this is old - but this describes almost exactly what I'm going through.

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

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10 years 1 month ago #21838 by ddoyle
Pat,

I am absolutely considering going to M.D. Anderson for a second opinion. I had a squamous cell carcinoma removed from my mouth there in '97. I also have a good report from a fellow named Dale here in Houston who is a sometime contributor to this forum, on a uro named Seth Lerner here in Houston who has an excellent reputation for neo bladder surgery.

However.... I'm going to let things settle down a bit and see what the next cysto shows. If there are low grade papillary tumors present, I'll certainly have another TURBT. Then, if my current doc starts insisting on RC, I'll check with MD Anderson.

I don't consider myself a risk taker, so if anything starts looking invasive we will go for the RC.

Warren,

Thanks for your valued input. To answer your question, I DO find it easier to deal with TURBT's and find that the recovery is less traumatic than the BCG or MMC treatments.

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10 years 1 month ago #21836 by wsilberstein
That's a really tough question David, but aside from considering the risk of progression and therefore the risk of a bad outcome, another factor in your case would be quality of life with your bladder. If the required treatment for keeping it will have you spending most of your time miserable dealing with prolonged treatment side effects, you have to weigh that into your decision. Note that I said, "If," so you'll have to know what your urologists wants to do to spare your bladder.

-Warren
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...

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10 years 1 month ago #21835 by Patricia
David...since your uro only has experience with the ileal conduit.have you considered a second opinion and consult with M.D. Anderson? I know you're in Houston..
http://www.mdanderson.org/care_centers/genito/display.cfm?id=3f16e501-83f2-11d4-aec800508bdcce3a&method=displayfull&pn=04d14483-79e8-11d4-aec700508bdcce3a
It couldn't hurt.........pat

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10 years 1 month ago #21830 by ddoyle
First, thank you to each of you who responded and shared experiences or recommendations. This forum continues to be a lifeline of encouragement and information to me and my wife.

We saw my urologist Thursday afternoon and discussed where we go from here. It has been five weeks since my second (and final for now) MMC treatment and the bleeding and burning continue. In his words, my urine specimen was "horrible" (orange in color from the blood). He's clinging to the possibility that my continuing problems stem from a severe and very resistant UTI. Otherwise, he says he's out of options, which prompted a lengthy discussion of radical cystectomy options, should it come to that. From my readings on the forum over the past 18 months I already know most of what he said but my wife did not since I have not wanted to make her worry. I suppose that it was for the best that she got to hear all this directly from my doctor, not doled out a little at a time from me. This doc only does the ileal conduit since he does not have time or experience for the neo bladder or even Indiana Pouch options.

My uro has repeatedly told me that he has never seen anyone react the way I have to both BCG and MMC. We did talk about the possibility of reduced dosage of BCG and perhaps we'll try that next. However, given my history of bad reaction to instilled chemo, it does not look promising.

All of this brings me to the decision we may be faced with as soon as Monday: do we continue on down this road of cystoscopies every three or four months, followed by TURBT's to scrap and burn off papillary tumors --- OR --- do we start looking seriously at RC?

Last night I read through some postings from members who had RC and Neo Bladders. The results are mixed, ranging from very satisfied to downright miserable.

So, if the bladder cancer remains low grade, what to do....?

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10 years 2 months ago #21591 by kathyk
David, I only had MMC after my first TUR. I had the 6 week course of BCG. Mid way I started having real problems so my URO reduced the dwell time in the bladder.I've read some PubMed abstracts of studies that showed that reducing the dwell time did not lessen the effect of the treatment and reduced the side effects. I'll try try to find a link for you. Kathy

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