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After 10 years it\'s CIS

7 years 8 months ago #37283 by wsilberstein
It's been said many times on this forum, once you have BLC you need to commit to a lifetime of surveillance. I hope your husband does well. The mitomycin c gave me 10 years.

-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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7 years 8 months ago #37281 by Bambi
Hi Warren-
I'm new to this site and someone referred me to this thread. My husband had several surgeries for transitional cell bladder cancer between 1198 and 2002, several BCG treatments and then the final time in the winter of 2002, they treated him with Mitomycin and after about 3 months of being pretty uncomfortable, he has not had a recurrence. That is until now. In January, he mentioned to me that when he went to the rec center, he seemed to have some burning with urination. We talked about his needing to drink more water and he started trying that. When I was laid up after surgery in February he came in one day and said that it still burned sometimes. I said something back from my perch on the couch- asking how often and such- and he kindof blew me off, saying, "well that's just the way it seems to be anymore" and I said "But that is not NORMAL!" Somehow that got his attention and I convinced him to call the urologist. He had his last checkup in September 2010 and it was a little bit of a scare- there was a red area that the Dr. biopsied during the scope. He also sent the urine away for the FISH test and all came back normal. So now they checked for infection (negative) and then sent the urine away again. Three weeks ago we got quite a shock because that came back showing cancer cells . He had a CT scan to check out the ureters and kidneys the next day and thankfully that was all fine. The next week he was in for a scope with the now only remaining urologist in the practice (his left in October unexpectedly). We really liked this younger woman and she saw the same red area as in September and two of the small stalk like growths near a ureter. She thought it made more sense to schedule him for surgery, biopsy the red area more in depth, as well as the stalks and to do "random biopsies" in several areas. She was going out of town, so that will be on April 18th. We are hopeful. He will have Mitomycin again so hopefully it will knock things out. Hope you are doing ok. It is so important though to stay vigilant, isn't it? Grandpa to quads must be amazing!
Bambi

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7 years 10 months ago #36270 by wsilberstein
pemquid wrote:

Warren--
You're such a "veteran" to me on the board, that it seems strange to be "ahead" of you on this!

I guess it does seem strange, but my original treatment was with Mitomycin C, not BCG, and this is my only recurrence in 10 years, so I never had BCG.

-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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7 years 10 months ago #36233 by Joey
Warren, I just finished by 21st "installment" last Tuesday. My first 6 I had little to no reaction. There were times where the reactions were greater than what I had the past three. I still get full dose and get a rash, fever, chills, burning, frequency and an upset stomach but all goes away in two days. None of my symtpoms have lasted more than the 2 days for any of the 21 treatments. April will be 3 years of no return. My next checkup is in June

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7 years 10 months ago #36225 by Markq
I finished my 1st 6 instillations a week ago. The first one I had no problems with, and after that I had some burning and an uncomfortable feeling for about a day. Pyridium for a day or so after the instillation takes the edge off for me. I haven't had any of the bad side effects some have. They're more of an annoyance than anything else. I'm wondering if they'll build when I start maintance. I guess I'll worry about that when or if I come to it.

47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.

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7 years 10 months ago #36224 by pemquid
Warren--

I had pretty mild reactions at the outset, and it wasn't until
I was into my second year that I had a stronger reaction, with a fever that lasted several days, and some pretty severe spasms (in my urethra it felt like). Never had any bleeding. I've been on 1/3rd dose for my last two maintenance treatments, which are now at 6-month intervals, and that seems to have done the trick. It does seem to be better when you get to 6 months between sessions rather than 3. I've had 21 instillations so far, and two more batches of 3 to go this year and I'm done.

You're such a "veteran" to me on the board, that it seems strange to be "ahead" of you on this!

Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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