Starting BCG treatments what should I expect.

6 years 8 months ago #53793 by jjadus
Hi, Thanks for your input. Considering my past history of flair ups keeping the BCG medication in my bladder is my main concern. The couple of times when my urologist did a bladder wash and scope to check inside the bladder, I had to literally run to the bathroom afterwards. But I'm not sure if during the bladder wash more fluid is injected into the bladder than the BCG treatments. If that makes any sense.

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6 years 8 months ago #53792 by Jack R
Jjadus,

A couple of thoughts - and always talk to your care team before believing anything you find on the web - from experience and a reliable source, Dr. Donald Lamm, i offer the following.

Arrive at the appointment with a near empty bladder. Avoid caffeine and all liquids 8 hours ahead of BCG instillations - an empty bladder is more likely to hold the BCG. Hold off on liquids until after the post BCG void.

See the following link to Dr. Lamm's blog, where he says, "The Scandinavian study that advocated 30 minute retention as I recall did not find any reduction in efficacy". While he is talking about maintenance dosing here, elsewhere good sources question the need of a full 2 hours hold time. DO try for the full 2 hours, but if not possible talk to the doctor about medications to reduce urge to urinate. DO NOT consider it a failure if 2 hours is not possible. Do not exceed a 2 hour hold time for any reason.

It is generally stated by multiple reliable sources that 2 hours is highly desirable for the 6 induction phase, less so for maintenance, as long as the desired reaction is obtained. After 30 BCG treatments, 1 hour is my best hold time, using all the tricks. My body's reaction make it clear that that time is sufficient for me at this point.

Again, TALK to your care team about ALL issues, concerns, fears and problems. Making it work is their job.

askdrlamm.bcgoncology.com/category/bcg-general/page/9/

Best,
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
The following user(s) said Thank You: cltyxx

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6 years 8 months ago #53791 by jjadus
Well I start my first set of BCG treatments this Friday. I'm thinking positive thoughts about the procedure, I just hope that I can hold the fluid for two hours. I've had problems with uncontrollable urination in the past.

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6 years 8 months ago #53786 by Jack R
Jjadus,

As noted, BCG CAN be the cause of the symptoms you mentioned, as well as other side effects. Unfortunately, while BCG is a proven cancer fighter, it does nothing to relieve discomfort over the short term.

Ask your care team about ways to minimize the side effects you describe. Adding additional fluids may help, AZO or generic pyridium can be a big help - they are OTC urinary tract pain relievers. Warm showers or hot compresses may help relax angry tissues.

Talk to your care team about ALL problems and issues- getting you through this is part of their job.

Best
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

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6 years 8 months ago #53785 by sara.anne
Replied by sara.anne on topic Starting BCG treatments what should I expect.
BCG is the treatment of choice for either high grade bladder cancer that is still localized in the bladder lining or for
low grade that keeps recurring. It is especially effective for CIS. It has helped many of us keep our bladders and I, for one, am very grateful for this!

BCG is an "immunotherapy" rather than chemotherapy. While it is not the most fun thing in the world it is way better than traditional chemotherapy with all its horrible side effects. BCG is an attenuated (weakened) type of TB bacteria that was developed many many years ago as a safe vaccine to prevent TB in children. It is instilled through a catheter into the bladder and you try to hold it there for two hours. The idea is to stimulate the immune system in the bladder lining and cause it to reject the bladder cancer cells. There are several variations of the protocol for administration of BCG, but the most common is to have it once a week for six weeks. Especially for cases of CIS, maintenance therapy has been found to increase the effectiveness of BCG in preventing recurrences. Maintenance therapy is given in three doses every three months for two years.

It is not without side effects and these are cumulative as the treatment kicks up the immune system. The most common is fatigue for a day or so after treatment. Also burning in the bladder and urinary urgency often accompany it. But this is all usually very tolerable and much better than the alternative. Some of these side effects are very similar to the symptoms you now describe... "flare ups" where I have a constant urge to urinate and burning while urinating...
which are often found with CIS.

There is a LOT of information on people's experiences with BCG on this Forum. Just use the SEARCH function at the top of this page and you will be inundated with information!!

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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6 years 8 months ago #53784 by jjadus
Hi, I have been diagnosed with urothelial carcinoma-in-situ involving the prostatic urethra and ducts. My recommended treatment was BCG treatments. My diagnosis was a result of TURBT. I've had several bladder washing which were not painful but very uncomfortable. I was wondering if BCG treatments are much the same as bladder washing. I occasionally go through what I call "flare ups" where I have a constant urge to urinate and burning while urinating. I just was looking for feedback or recommendations from others that have gone through the BCG treatments. Thanks

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