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BCG Working?

12 years 5 months ago #760 by Eric_T
Yikes -

stranger things have happened, I'm sure--

hang in there, Eric D

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12 years 5 months ago #758 by Rosemary
I have had bleeding...the 2nd treatment and the fifth...the doc catherized me on 3rd visit for pure catch and said I was crystal clear....I guess I'm glad to hear that it's not that unusual to bleed during treatmennts, but still a little concerned... the doc seemed concerned...(haven't told him about this last time...the bleeding I mean...see him Monday)...

Something odd happened during the 2nd treatment...after voiding and pouring the bleach in the toilet, I went to kitchen and came back thru the hall past the bathroom...I heard the most racket in there and when I went in, there was the most bubbling up and gurgling and fumes going on. And lots of froth.

I told the doc that I thought there was a gargoyle in there. He said he had never heard of any such thing!

It hasn't happened again, since that time...

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 5 months ago #757 by Eric_T
Just passing along our experiences to date, partuculary with BCG, to help others perhaps identify relative to their own experiences... Note that in addition to this foum, there is a huge amount of "dialogue" on BCC in the WebCafe's archives, which are easily seachable by keyword, but for which you need to register separately...

My spouse has TCC(Ta), high grade,---since 6/2005 she has had 2 TURBs, then 1 BCG course( 6 mo ago), a recurrence, another TURB, and now has started a second course of BCG, 6 months after the first course, this time with w/ interferon. Curiously, she is getting full strength BCG, and this from those people involved in the original O'Donnell work in BOS. (also see sites on the Web Cafe relative to O'donnell's work, studies, etc). They tell us that they only reduce the strength if you experienced adverse reactions previously. We had not. So myth no 1, I guess, would be - they don't always reduce the strength. We were also told they feel that interferon boosts BCG "potency" by another 40%.

Another "myth" we've had diminished - It is not necessary to roll around for two hours after BCG instillation. That once was the wisdom, but experience hasn't demonstrated any need for this - probably because the bladder pretty much shapes (shrinks) around what's in it so that it gets "bathed" pretty thoroughly.

We were also told that BCG loses it's toxicity (and value) after 2 hours. [mixing has to be timed carefully to dovetail with one's visit]. There have been arguments in the past relative to holding BCG "as long as possible." But apparently that has no value.

Everyone wants to be super careful about exposing ones partner and others following instillation, but apparently the real danger is only for a short while (hours) and the only two cases of TB infection our people knew of, had to do with medical professionals somehow being exposed to the BCG while virile, and probably thru inhalation of "fumes." One should still clean toilets well with bleach, but probably not for days the way we did the first round! And conservatively, the intercourse recommendations should be followed, but frankly, some seem unconvinced of the validity of such long running precautions.

Another item that has come to light this go around, for us: It is ok (normal?) to experience light bleeding and even passing tissue following instillation (- remember, I'm talking BCG + interferon; not sure if this applies to BCG alone). And we are experiencing this after this first instillation...But if more than a mild fever occurs, then there is probably an infection involved, and one should take immediate action (notify Doc).

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12 years 5 months ago #649 by wendy
>Does anyone know how long it takes for you to get rid of the BCG after the treatment is over? <

Here's a quote from a Canadian website:
"Men having this treatment can pass on BCG during sex. To protect your partner, you should not have sex for forty-eight hours after each treatment. Use a condom during sex at other times during the six weeks of treatment. You should also use a condom during sex for six weeks after treatment has ended. If you have questions about this, ask your doctor."
http://www.cancervic.org.au/cancer1/patients/bladder/howtreated.htm#immunotherapy

Hope that helps somewhat.

Good luck to your father and you!
Wendy

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12 years 5 months ago #648 by jarg1946
My Dad is going in the morning for his first BCG treatment. We are all kind of baffled over this cause the doctor doesn't give us much information. He is a great doctor and very caring but it's strange that he doesn't have any pamphlets or the like to read about this. Most of the cautions I got off this website! Does anyone know how long it takes for you to get rid of the BCG after the treatment is over? Also should we make sure he drinks plenty of water? He is 84 and otherwise in good health. Thank you all so much!

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12 years 7 months ago #494 by skypilot
:-[ Thanks for the reply, I did go in today they said all is ok with kidney and uriter. taht is the good news but he said the tumer they had removed next to the ureter there was eatehr new tumer or posibly something else. But he he said if results come back as thumer and cancer he wants to remove my blader and do a Neo blader. I am not very eccited about this possibility. I am praying and hoping it does come to this. he said the rest of my blader looked real good. I wonder if I have ant alternatives? If it is a tumer. thanks In advance for anyones help on this. Don

Hanging in there!

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