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Begin BCG in 2 wks and have some questions

2 years 9 months ago #50697 by Jay
Hi Mike:

I'm starting my 3rd, 3 week BCG maintenance in a few weeks. I've always had a urine sample ahead of time, plus labs before the 1st week. Yeah, you've got to save a little waking up, I always try for the earliest appointment for the morning. Hopefully you are in a place that keeps you the 2 hours and it isn't an office where they just instill the BCG and send you home to turn on your own for 2 hours. Afterwards drink, drink, drink, I've found after about 4 hours for me, it mellows. Try different drinks, I've used chicken soup, don't know if it psychological or what, but seems to help. I've read BCG treatments get worse over time, I haven't really experienced that, they have been sort of standard as far a burning pain? I've also read try not to flush it all out too quickly, let it work? I asked the Dr. about that and he said 2 hours of it in your bladder is enough. Just some of my experience? Good luck, Jay
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2 years 9 months ago #50688 by Mike M
Thank you MadLove,
Glad to see your husband is doing well...best wishes for continued success!
- Mike

12/15 - DX - Ta HG, 1.5cm Pap, Focal CIS; Treatment: SWOG Protocol...currently BCGx27

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2 years 9 months ago #50686 by MadLove
Dear Mike,

My husband's completed 9 BCG treatments. Urinalysis was done before each treatment. Even though fluids were restricted, he was able to produce a specimen each time. The discharge instructions were to hydrate well after the 2 hour BCG hold and first void and to treat voided urine with bleach for six hours.

Hydration seemed to ease irritation while voiding. More in of course means out. My husband carried a disposable urinal in a brown paper bag for those got to go moments. Our one way travel to the urologist is 2 hours so we usually stop for lunch and first void using the disposable urinal and then carry the filled urinal home for the bleach treatment.

He had a TURBT/biopsy six weeks after finishing the first 6 treatments. About six weeks after that, he had 3 weeks of maintenance BCG. Six weeks after that, he had an in office scope exam.

Best wishes on your BCG treatments.

Husband's journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto's
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto...
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2 years 9 months ago #50685 by Flamenco.
Hi,
1)I have never had to give a urine sample prior to instillation to check for infection.( I am not saying that it is right orwrong, just that my doc never thought it necessary to check). I always have emptied the bladder immediately prior to the instillation. As regards refraining from drinking , I think a couple of hours before to stop is ok, and important that you do not drink anything which has a diuretic effect ( that means tea, coffee,or any drinks containing caffeine), the idea being that you can hold in the medication for the prescribed length of time if at all possible.
I think the bcg is pretty much flushed out after the first 3 or 4 voids, but to be on the safe side you keep using the bleach to be sure there is no risk .
My main tip regards drinking plenty of water from about half an hour before you first void, and continuing until any pain or discomfort is eased- My schedule that worked for me is basically - trip to loo, drink a large glass of water, etc etc The more dilute the urine is ,and the stronger the flow, the less it hurts to pass it.Of course that means you will have to be prepared to make a lot of trips to the bathroom. Ask your doctor for some meds to have on standby in case you need them for bladder spasms, you may not need anything, particularly with early treatments, but it is no good trying to run around to pharmacies if you find you do need them, particularly if you are needing to make frequent bathroom trips!!
I can·t remember how long after completion of bcg I had cystoscopy, but I think they leave time for the bladder to recover as it is difficult visually to distinguish between post bcg inflammation and abnormal lesions.
Diane
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2 years 9 months ago - 2 years 9 months ago #50684 by Mike M
Hello Friends,

My Uro agreed to begin initial 6-wk BCG induction on 2 Mar. Had some questions for those who "have been there, done that":

1). Understand a urine sample is required before each instillation to check for infection. However, I also understand you are to refrain from drinking for several hours prior in order to more easily retain the BCG. This would seem problematic (no fluid intake = no urine)?
2). How long does the BCG stay in your system...is it believed to be completely voided out by the 6 hr point (stop bleach treatment in toilet) or does it remain longer, and if so, how long?
3). How soon after completion of the 6-wk BCG cycle is the cystoscopy normally?

Any advice (personal tips or patient instruction sheets) regarding preparation before, during, and after each daily treatment would be greatly appreciated.
Best regards,
- Mike

12/15 - DX - Ta HG, 1.5cm Pap, Focal CIS; Treatment: SWOG Protocol...currently BCGx27

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