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- This topic has 4 replies, 5 voices, and was last updated 11 years, 9 months ago by
stumblegirl14.
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April 29, 2013 at 12:36 am #8699
GWong
ParticipantHello, my name is Gord and I am 52 years old. I was diagnosed with CIS in early 2012.
My first treatment was with BCG which did not work. So in the fall of 2012 I went back for another round of BCG but after two treatments I contracted TB from the BCG.
So after a month of antibiotics I was cleared to continue treatment, but I could never used the BCG again. My treatment then restarted using Mitomycin for 8 treatments. Unfortunately this did not work either. Three weeks ago I had the TURBT procedure done for the third time. The results was that another area had developed on the lining of the bladder, now I had two areas to deal with. Next week I will be starting treatment again with Mitomycin, there will be 8 sessions and I am hoping this will kill it once and for all.
I am still working, just taking a two or three days off during the treatment. I am holding up well but my wife is taking it very hard. Hopefully this will all be over soon.
Gord
April 29, 2013 at 1:10 am #15423marysue
ParticipantHi Gord. Welcome to the site but sorry that you have need of us. I hope that Mitomycin C will do the trick once and for all. I managed to tolerate BCG (21 treatments in total) but it did take a toll on me. The side effects got pretty heavy. Hopefully for you the Mitomycin won’t be too bad to handle. CIS can be very aggressive. I had papillary tumours (the kind that look like pieces of coral or cauliflower) with only a couple of small CIS spots. Everything was graded high grade so it had to be taken seriously. CIS is a high grade cancer so you can’t mess around. I too, took time off while doing BCG. I was too emotional the day of treatment and needed the following two days to recoup.
It can be very hard on spouses. They want to help but don’t always know what to do and because of that feeling of helplessness there is a loss of control. I’m sure that she is just very worried about your welfare and wants things back to normal. This site is open to spouses as well so encourage her to post her questions and concerns. Good luck and keep us posted.
April 29, 2013 at 1:07 pm #15425Greg
ParticipantHi Gord. Welcome. I had a lot of Mitomycin over about two and a half years with recurrences periodically. Sometimes they also may use Gemcitabine or some other chemo drug. Generally the side effects were not too bad – achy, flu-like symptoms mainly, urgency for a day or two. I usually took the day of treatment off and went back to work the next day. It’s certainly not uncommon for different areas of the bladder to be affected.
Please ensure your urologist deals with a lot of bladder cancer. It’s worth it to get the best treatment for this disease. “Well-meaning” is nice, but not when it comes to treating aggressive disease.
Keep us posted and share your journey. We may collectively be able to help you and your wife and you may be able to share insights that help others.
April 29, 2013 at 4:00 pm #15430Zina
ParticipantHi Gord, sorry we had to meet under these circumstances. I know what it is like to want the nightmare to be over – for yourself, and for your family who suffers watching you suffer. Does it make you feel like you need to put on a brave front to make things easier for them? That’s not necessarily a bad thing… many times, “faking brave” helped me get through the rough times. Just be honest with yourself, and when you need to fall apart for a little while, let yourself. Then brush yourself off and “fake brave” til you actually do feel brave. We are here to support you whenever you need us. Please take Greg’s advice to stay vigilant with this disease and make sure your doctor does too.
April 29, 2013 at 4:07 pm #15431stumblegirl14
ParticipantGord, I just wanted to add my welcome to the site. Hopefully this time your treatment works. I wish you the best as you carry on forward.
Flo -
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