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Mitomyicin Question. Having a problem

6 years 5 months ago #42244 by twauson73
I went through almost 2 months of urinating straight blood quite frequently with Mitomycin and the pain was horriable!!!! The only thing I could do Is sit in Hot baths 7-8 times a day, And sorry to put this but I had to put Ice packs between my legs!!!! I am so sorry you are going through this!!!!! Keeping you in my Prayers!!!

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6 years 6 months ago #42116 by rbmc
Gosh, guess this helps people indicate that everyone is different, and that this is a good place to ask questions. My single Mytomyacin was done directley after surgery, with no side effects. Never heard of any Baking Soda tricks? Adding beer to BCG increases the frequency. Wish I could say more than "Good Luck" in defeating the beast.

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6 years 7 months ago - 6 years 7 months ago #41963 by wsilberstein
I had Mitomycin C for high grade tumors and CIS 11½ years ago and remained cancer-free for 10 years. My urologist did injure my urethra during one instillation resulting in urethritis with each treatment and ultimately a nasty stricture, but if that hadn't happened, I would have considered my Mitomycin C treatment uneventful. I had a recurrence of CIS 1 year ago and was treated with BCG. I did well for 5 treatments and then had a reaction to the 6th... and now, a year later, I have another recurrence of CIS and have to figure out what's next.
We each respond differently to treatment.
BTW, nobody ever told me to do anything with baking soda or to not drink after the mitomycin C.
-Warren

-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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6 years 7 months ago #41901 by mmc
I agree with your choice and logic.

Any recurrence of the CIS or other high grade should trigger a very serious consideration of an RC though.

I hope it never comes to that and that the BCG does its magic for you. The odds are on your side if you follow the maintenance protocol.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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6 years 7 months ago #41897 by HLamb88937
Thanks for your answers. When I read that you had BCG and then two years later you had invasive cancer I became saddened for you and I was feeling that that could happen to me too, and I have had pretty high spirits since all this began, almost like a new hobby. My bad news is that some CIS was found on top of the prostate area, and that is very very dangerous. The good new was that it all cleared up after six rounds of BCG. A week after the treatments ended I ended up with this rather painful reactive arthritis (which I had never heard of). I had to use a walker for a week and a cane for another week because of ankle pain and edema...not to mention my neck and ribs. So I am caught in a conundrum...BCG and three months of arthritis or no arthritis and a great chance of the CIS coming back. I have given it a lot of thought and I think I will take the arthritis and BCG. The arthritis is limited in how long it lasts but the cancer isn't.
You seem to be o.k. with your new system. I guess it really is a matter of perspecive. Henry

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6 years 7 months ago #41896 by mmc
No.. They stopped all BCG for me after the reaction I had. No to your other questions. My uro felt it too dangerous to continue BCG for me. I should have switched uros at the time but I was too naive back then. I learned the hard way to get to a specialist in bladder cancer sooner rather than later.

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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