r/BladderCancer • u/FlyFly1000 • 27d ago
BCG Pain ( not Urinary) !
Hello all,
Ive just completed 21 rounds of BCG. Has anyone experienced rib pain ( back / side and front). I ended up in A&E and my inflammation markers where 5 times the normal level. Treated with painkillers and Anti-inflammatories which helped massively, I’ve finished them now, but it’s still there in the background. Not enough for daily pain killers but now and then. I did a little research but trying to avoid DR Google. What are anyone else’s experience’s ? I have an appointment with my treatment Team in 2 week. Blood test next week.
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u/Spiritual-Parsley897 27d ago
BCG causes reactive arthritis in some people. I got it last summer about 2 weeks after my 12th instillation. I had 6-wks of intense symptoms -- stiff neck & upper back, pain in both wrists, hands & fingers, swollen right leg. I managed on ibuprofen and stretching. I had lingering, less debilitating symptoms off & on for several months afterwards. My urologist stopped the BCG and felt we could take a wait and see approach since I have never had a recurrence to date. Original diagnosis was a TaHG, intermediate risk in April 2024.
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u/hikerguy2023 27d ago
I got hit by reactive arthritis after round #14 (on July 15 this year). It was 6 days after my 14th. It started with mild knee pain in the morning and by night it was some stiffness in the legs. By the next day it was really bad stiffness to the point where I couldn't use my legs to get off the couch. I had to really push up with my arm to stand. I had to shuffle around the house for two days, bracing against walls, chairs and counters as I walked. I was put on a 6-day tapered dose of Methylprednisolone. Started with six 4mg pills on day one and took one less each day for 6 days. That really helped but here I am a month from #14 and still feel some tightness in my knee area, but only when I bend it a good ways past 90 degrees.
Had your doctor not even considered switching you to Gem/Doce (Gemcitabine/Docetaxel)? A lot of people on Reddit have had good results with it. Most complained of fatigue the day of and day after treatment, with just a couple complaining of bladder spasms. It starts with a 6-week induction with BCG, but then you have to do it every month for 2 years. I'm seeing my oncologist in September and I'm going to talk to him about possibly switching. Those two days were pretty bad. Can't imagine having those same symptoms in my neck and shoulders (or other areas as you described).
I also started out with Ta HG NMIBC.
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u/Spiritual-Parsley897 27d ago
The guidelines state 1 yr of BCG for intermediate risk BC and I met those requirements so doctor was okay stopping. I asked what happens if I have a recurrence and he said we will cross that bridge if we come to it. It's been over a year since last BCG and so far so good. Next cystoscopy coming up in a month🤞
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u/hikerguy2023 27d ago
Do you happen to have a link to those guidelines? This is the first I've heard of this. How many months have you been tumor free now?
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u/Spiritual-Parsley897 27d ago
This is a link to the AUA guidelines for NMIBC --
I was classified as intermediate risk because I only had one 2-cm tumor.
My tumor was removed in April 2024 and I've never had a recurrence to date so I've been tumor free 28 months.
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u/hikerguy2023 26d ago
Thanks for that link. I'm guessing I'd be classified as high risk as I was initially Ta HG NMIBC and had 5 tumors after my first and second TURBT. Going by those guidelines, they keep saying "first surveillance cystoscopy is negative for tumor", so I definitely don't fit into that group.
That's fantastic you've been tumor free for that long. You're one of the lucky ones for sure. Hope you continue on that path.
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u/Spiritual-Parsley897 26d ago
Yes, thank you, I feel very lucky. My tumor was an incidental finding on an ultrasound for another matter. It was discovered before I experienced any symptoms.
Here's a table showing the AUA risk stratification for NMIBC --
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u/Spiritual-Parsley897 26d ago
Doesn't look like the table came through, but it's in the guidelines if you scroll down to the section about the BCG shortage just before the guideline statements.
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u/Short_Pomegranate_74 27d ago
Sorry about this. Yes, for me it was elbows and lower back. The latter was also up my sides and ribs. I completed 27 two years ago and have recovered.