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BCG Maintenance Pain Relief – Any Suggestions?
Hello Everyone,
I am new to the forum and this is my first post. Not a long time listener but first time caller! :)
I just completed my 15th BCG maintenance treatment on Monday morning of this week. Today is Thursday evening. Up until this treatment, I am usually back to about 90-95% by the 48 hr mark, other than frequency. Not this time. The pain is hanging longer than normal with no indication of subsiding. Walking can be quite uncomfortable. Sitting not so bad.
I’m just curious as to what any of you may have done or taken for pain relief. Ibuprofen takes a little of the edge off but I am not interested in taking Advil around the clock.
Thanks for any insight you may have!
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5 Replies
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For bladder spasm, if I read it right, the AUA guideline for intravesical BCG/Chemotherapy treatment states
“Anticholinergics may be prescribed if the patient complains of bladder spasms.” if the patient has the problem of retaining the agent. Refer to Chapter VII Patient Assessment, Section A Physical Exam, Paragraph 5.
https://www.auanet.org/guidelines/intravesical-administration-of-therapeutic-medication
In terms of dose deduction, there are mixed messages among urologists. But it indicates continuining with lower dose seems to be longer recurrence free period than stopping when the full dose becomes not tolerable.
There was a virtual meeting by well-known urologists at AUA 2020 meeting. Though the title was “what do during BCG shortage for high-risk NMBIC patients?”, it talks about the efficacy of reduced dose frequency. Dr. Seth Pau Lerner of Baylor College of Medicine, TX said appropriate cytokine response may be observed with very low disease as little as 1/100th of a standard treatment dose. Dr. Ashish Kamat of MD Anderson highlighted that the duration of therapy (1 versus 3 years) appears to be more influential than dosage (1/3 versus full dose) as highlighted in data from the EORTC 30962 trial. Below the result of the EORTC 30962 trial.
5 year disease-free rate ( same as recurrence-free)
1 year @ 1/3 dose 54.5%
1 year @ full dose 58.8%3 year @ 1/3 dose 62.69%
3 year @ full dose 64.2% -
From what I have read, BCG dosage reduction helps many people. 50%, 33%, 25% even 10% of strength has been used. Keep in mind I am not a doctor but, regurgitating what I have read from others. You might follow with your URO.
At the same time, I am not sure about first-time installation spasms are happening due to BCG. Is it possible it is simply rebelling due to the catheter? I can’t remember if your cystoscopy has had spasms? If so, it might just because of a “foreign” object poking you.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Hi Alan, I was curious about your statement on reduced dosage and it’s effectiveness. I just had my first bcg today and due to bladder spasms they could only get 30ccs of the 50ccs planned. We do have a plan to address the bladder spasms for the next one.
Thanks Alan!
I have seen several folks that have reduced the dosage and that sounds like a pretty good option for me to discuss with my Uro. I wanted to complete the full course of maintenance which is 9 more(3 every 6 mos.) because the prognosis was 86% of no recurrence with the full maintenance course but after this round we will see.
Again, thanks for the reply!
Welcome TuckerCFP,
I just wanted acknowledge that your post is seen. I have not had the extra pain and discomfort you are experiencing. I think I’d call my URO and get something stronger.
It also appears that you are getting really sensitized to BCG. many have taken the dosage down by 1/2, 1/3, 1/4 even 1/10 and gotten desired results. Plus, nothing says you have to continue. You may very well have beaten this into submission.
Perhaps someone else will have an idea on what to help. Of course contiue drinking water to flush the area. If you find relief please post as we all learn from each other.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.Sign In to reply.
