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second set of bcg treatment and lots of pain

5 years 11 months ago #43798 by Gary2
I just had a scope done Tuesday (looked good!) and the Uro said although protocol is to have BCG treatments every six months for three years, the important thing is TO DO them. My last treatments were in June, but he said I could schedule the next set of three any time within the next 1 - 3 months (still 1 x 3 weeks), meaning I could go up to nine months between treament sessions this time. I take all that to mean there is no harm is skipping a treatment, but to keep doing them is the important thing. BTW - he also said a lot of people can't handle it for three years, which might be why he's letting me go up to nine months between sessions this time.

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5 years 11 months ago #43797 by sara.anne
I had to skip an occasional treatment when my bladder was too irritated with BCG-induced cystitis. But I SKIPPED it and resumed the next week...just adding one more week to the treatments. I so wanted to get rid of the bladder cancer that I was actually upset when they wouldn't do the treatment. No matter how bad it was, it was getting rid of the cancer and that is what I wanted.
AND it apparently worked.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 11 months ago #43795 by ric132
hi
just want to update things, my doc cut my dose to 1/4 of full strength and it did go better with the spasms but still lots of pain in groin and pain when urinating, she had a hard time getting the cafeter in and on the way out and now lots of pain in the urethra an throbbing in my penis. I had to not do the 3rd bcg yesterday and think i am going to just wait for the next set of treatments has anybody else skipped a treatment, not sure what the doctor will say, but i guess it is my body and my decision. does any one have any input, any will help.

thanks
Rich

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6 years 1 week ago #43730 by Gary2
I drink cranberry juice with a little water in it to cut the taste immediately after the two hours, maybe about 12 oz, and as much water the rest of the day and night as I can. I always drink a lot of water, probably at least 8- 10 glass a day, PLUS 72 oz of green tea (zen, unsweetend, Starbucks) every day possible.

Gary

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6 years 1 week ago #43729 by mmc
They should not do treatment in cases of gross hematuria (visible blood) as it can lead to sepsis. Minute amounts of blood are borderline and some urologists prefer to postpone in those cases but some go ahead if it is only trace amounts of blood.

As always, tell your doctor about anything that causes you concern no matter what I or anyone else tell you.
Just the reassurance from the doc can reduce stress and stress is not good.

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 1 week ago #43728 by Gary2
I drink a mix of cranberry juice and water right after the two hours, about 12 oz. I try to drink A LOT of water all the time and especially the first day of bcg, at least 8 glasses. I also drink about 72 oz of green tea per day (iced Zen, unsweetened, Starbucks).

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