Anyone have pain after BCG Treatments, especially with urination?

Hi this my 12 Bcg.last 6 was very bad pain every time to urinate.
This time white mucus and blood ,that hurt so bad but it ease after discharge when urinate but it happen every 8 hours. But during that time burning I cannot even walk right it hurts when I walk and tip of my P is burning. I’m on Azo Tylenol and other but not working.
My co worker her sister was on Bcg jar gave Her very very good pain killer
If these doctors has same pain like we do I’m sure will give good pain meds

🙏

Perhaps I was the one. I had a loop recorder installed 6/5. The Eliquis blood thinner was interfering with healing from Bladder Cancer surgery so Cardiologist took me off it as my Afib seems under control at present. The loop recorder will monitor this.
I just had third BC surgery last Wednesday. Passed blood and clots (painful) through Friday but urine seems to be mostly clear now and only moderate discomfort urinating. That was not the case after prior surgeries - blood was prolific long after the surgeries - even during BCG treatments which failed for me.
I expect to start Adstiladrin treatments soon. Hopefully that will work for me.

Thank you for the information, I go back next month praying for good news, and no that was not me with the afib

Hi tgsmith. I had my 6th treatment this past week and it was much less painful than #4 and #5. I did take Uribel preemptively, but not sure that did the trick. It was still uncomfortable, but I didn't feel the need to take anything stronger than Tylenol. Interestingly, that urologist very belatedly told me that I had a UTI in my urine sample of a week earlier and I had started on an antibiotic the day before the 6th treatment. That may have been why my pain was reduced.

Importantly, I have a friend who has has been dealing with prostate cancer and had been going to the same practice I've been going to. He convinced me to consult with his doctor he had switched to at a teaching hospital at a major university who is a "Urology Oncologist" as are all those in that staff. That doctor called me right away and was extremely sympathetic and understanding. He pointed out that new therapies are coming out frequently for bladder cancer. They even have several trials going on, though he was quick to say that he didn't know if I was ready for any of those yet. But what I wanted to convey is that I finally felt like there was more hope. He is more of a prostate specialist and is referring me to one of his colleagues who specializes in bladders. BTW, are you the one who I was speaking with who said you had afib and your cardiologist had installed some kind of a "loop" device? I can't seem to find that thread.

Adstiladrin is a gene therapy used to treat high-risk, non-muscle invasive bladder cancer (NMIBC) that does not respond to BCG treatment. It delivers a copy of the human interferon alfa-2b gene directly into the bladder to help the immune system fight cancer cells. It’s given as a once-every-three-months instillation directly into the bladder.

Hi @tgsmith, I’ve learned it is widely accepted, by Urologists and patients, that any nasty symptoms during and after intravesical BCG immunotherapy are simply part of the process and to be tolerated. I tried that. Ultimately I had to say, “no more”. I suspected, and it has been confirmed, that I suffered from something other than the usual side effects.

I’ve had a total of 12 BCG instillations (6+3+3). The night after the 4th I experienced two hours of severe (level 9) pelvic pain. That started 18 months of constant and increasingly elevating severe pain (5-9) and urinary frequency (35-40 X/day).

My 2nd Uro/onco diagnosed me with BCG induced cystitis and tried to treat with various medications. After 18 months of trying different medications with little benefit I came across some information in the bladder cancer group on inspire.com while searching on “BCG induced cystitis”.

In a nutshell, it was there that I learned about the possible infectious complications of BCG immunotherapy. I went to an Infectious Disease doctor, who tested, diagnosed and treated me for a mycobacterial (m. bovis) infection of the bladder resulting from intravesical BCG. I’m nearing the end of a 9-month regimen of antibiotics but frankly the pain and frequency ceased after the first 3 months.

Treatment of my BC has been changed from BCG to monthly intravesical Gemcitabine/Docetaxel chemo. Cytology and cystoscopies have shown that to work for the past 7 months.

Best to you…

No and that is terrifying no, that you can have cancer and being pain with no help very disheartening

I agree with you 100% and that it’s terrifying. Where does that leave? An individual who has cancer and honestly is in pain that is so scary.

Good morning I have been watching videos by a doctor. His name is Dr. Li, he talks about diet and how eating can affect cancer cells. I also have been watching another Doctor Who stated the same thing. Has anyone else heard this?