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BCG Treatment

5 years 2 months ago #49143 by Cynthia
Hello, Thought I would chime in with a thought. You might want to talk to your doctor about dehydrating yourself for either 24 or 36 hours. It might have unthought of consiquinces. You don't want to win the battle and lose the war. Good luck.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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5 years 2 months ago - 5 years 2 months ago #49141 by mclabhran
I hope my experience will help you a bit. I know that my body does not retain liquids for too long and when I have BCG treatments I do not drink anything for 24 hours or a little longer and I stay away from foods that produce a lot of liquid. If I don't do that I will not be able to hold the BCG for the complete two hours. I do get thirsty and I get around by putting a little bit of ice in my mouth to take away the dryness, but not a lot of it. On two sessions, I was very upset with myself for not holding in the BCG. However, I needed to understand the function of my body better. So far, so good.
It is possible that you also don't retain water and why you are experiencing what I went through. Hope this helps.

Good luck with your cystoscopy!

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5 years 2 months ago #49139 by Jay
I'm not sure about the 36 hour fast, but my first 3 week maintenance wasn't as complete as my initial 6 week treatment, and I think it could have been my fault. I wasn't as careful not drinking water after midnight. The 3rd week I had to call it quits after 1 hour 40 minutes, the burning pain was too great. Besides the amount of BCG, I had quite a lot of urine also that drained and that could have been my problem. I'm really going to "NOT" drink anything after midnight the next time and hopefully I will be able to complete the whole 2 hours each week. I don't want to cut down the dose of the BCG as of yet, first cystoscopy tomorrow after my first 3 week maintenance. Jay

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5 years 2 months ago #49106 by ustabee
HI, Ustabee here. T1aHG, diagnosed 3 months ago. First scraping May 29th, 2015.

A few weeks ago I wrote about my first experience with BCG, what a disaster it was for me. I couldn't hold the fluid for more than 45 minutes. Since then I have had a second scraping which was negative and yesterday I tried the BCG treatment again. I fasted (no water, no food) for 36 hours
before, so I was virtually dehydrated and had an empty stomach. It went off like a charm. Two hours
without any discomfort at all.
I have no reason to believe that what I did was the cause of the success, no doctors recommended what I did and I never read anything about it. It was a desperate measure that made sense to me and actually worked. Not exactly the "Scientific Method" but one never knows without trying.

Ustabee

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5 years 2 months ago #49073 by mclabhran
Thanks Sara for your comments.

Oh, by the way, I should mention. I am a SHE not a HE.

Wishing you all the best USTABEE.

It seems doctors will vary in their opinion about the rolling around once the BCG has been administered. I was told as the bladder appears to be balloon shaped the treatment needs to reach all areas of the bladder wall and not remain sitting at the base of the neck of the bladder as lesions or tumors may have resided in certain spots on the bladder wall. Since the amount of BCG inserted into an empty bladder is a small amount (50ml about 3.5 tablespoons. The bladder’s normal capacity is 400ml=27 tbspn; 600ml=40tbspn - when full), the rotation needs to occur and holding of the BCG for as long as it can be tolerated.

For me it is not so much the holding in the BCG than the burning afterwards particularly at the entrance of and part of the urethra. Like salt in an open wound which takes weeks to heal and then have to start all over again! I guess it beats being dead!

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5 years 2 months ago #49069 by ustabee
Thanks again Sara Anne,
I know how important this treatment is, and I'm hyped up to give it my best shot
this Wednesday. You and the good people on this web site are great sources of
information AND inspiration, so thanks to all.
Ustabee (Marty)

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