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BCG Working?
I am a 45 year old women, diagnosed with BC in December 2005, 2 operations since January 2006, removal of 2 tumors, 4 superficial CIS remaining. I just completed my 6 week course of BCG treatment and have had zero problems. In fact, I have had no reaction, pain, discomfort, nothing!. I know, I am extremely fortunate, but this concerns me, the small voice inside is telling me this has not worked successfully 100%. My question, has anyone experienced simular experience, (or lack of) and if so, was it successful, did you need additional BCG treatment with Interfron? I am an information starving person. I have been reading everything I can on BC, but have been unable to gather sufficient information on the sucess rate of BCG with CIS patients the first time around treatment. I have to wait now the 6 weeks before finding out the sucess rate.
Starving for Info.
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9 Replies
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Yikes –
stranger things have happened, I’m sure–
hang in there, Eric D
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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
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).
>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
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!
:-[ 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!
I’m in the same boat as Sky Pilot. Finished my 6 weeks of BCG treatment on 30 March and then went overseas for a holiday. I had 2 tumours also the second was a recurrence found in January after original one was removed in October. They were both superficial. I still get the urge to pee urgently even after 5 weeks but there is usually little urine there unless I haveen’t peed for a fair time. I guess the BCG is still working in my system. I am due to go back into hospital for another P & P on 17 May. Hopefully all will be clear. I am always positive about these things and remain paranoid about regular checks having survived bowel cancer 10 years ago.
Good luck with your follow up and remain positive. You can beat this.
Jeff
Hi Terry and Sky Pilot,
Actually six weeks is not a long wait after BCG, one expert says it can actually take six months for the full effect to exert itself. Others say three months. So it’s possible that BCG hasn’t had time to complete its mission in 3 wks.
There’s info about BCG and Interferon plus a few great links to external websites in the immunotherapy section of the webcafe site. Should answer lots of question…but even the experts can’t predict what will happen 100% of the time. Still, Terry, you can be comforted by the good stats of BCG in eradicating CIS, hovering about 75%. Also, the fact that a person has no reactions, or even terrible reactions, doesn’t predict response or non-response to BCG. You can be one of the lucky ones that has great response and no side effects.
Sorry for the delay in responding, I’ve been offline a couple of weeks and just catching up.
Take care,
Wendy
I just finished my 6 BCG tretments after 2 tumers were removed. I did not have any problems only blader spasiums making me pee every 30 min for first 24 hours then evry hour. My doc has me going in for turb 3 weeks after my last treatment. 6vweeks seems kind of long wait. Don
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