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Anyone have pain after BCG Treatments, especially with urination?

Posted by tgsmith @tgsmith, May 1 1:13pm

I’m receiving BCG treatment for a bladder cancer. I’m on my fourth week. Has anyone had pain after the treatment I have and it’s severe when I have to go to the bathroom please let me know.

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tgsmith | @tgsmith | Aug 15 9:49am
In reply to @quahog "Not much of a problem during first six treatments but the first three maintenance treatment have..." + (show)
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Not much of a problem during first six treatments but the first three maintenance treatment have been very difficult. Burning, urgency, pain, blood, flu like symptoms, etc. It got worse with each treatment. Going for an evaluation cystoscopy this Wednesday and if clear I’m going to lobby heavily for ceasing the maintenance program and going for periodic cystoscopy instead.

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I had problems with the last two treatments so painful, I hope it gets better for you,

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quahog | @quahog | Aug 15 9:11am

Not much of a problem during first six treatments but the first three maintenance treatment have been very difficult. Burning, urgency, pain, blood, flu like symptoms, etc. It got worse with each treatment. Going for an evaluation cystoscopy this Wednesday and if clear I’m going to lobby heavily for ceasing the maintenance program and going for periodic cystoscopy instead.

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wifey9 | @wifey9 | Aug 14 9:53pm

It burns like fire when urinating the first time after the treatments. I felt like I had to urinate every 15 seconds at first. My doctor prescribed pyridium. I take one of those and a Tylenol. That seems to help me. Having those first six treatments is tough. Hang in there! I'm 18 months clear after a couple tumor removal surgeries, a couple removals in the office, and a couple years of spread out BCG treatments. I am thankful to have a cancer that doesn't require intravenous chemo and radiation... at least not so far! Is your pain when urinating still happening a few days after treatment? If so, talk to your doctor.

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tms3 | @tms3 | Aug 13 2:06pm
In reply to @tgsmith "Good morning I have been watching videos by a doctor. His name is Dr. Li, he..." + (show)
Profile picture for tgsmith @tgsmith

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?

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I have not heard about the diet, but I have heard that refined sugar is what cancer cells thrive on. I've seen so many "magical" cures for everything you can imagine online, so it pays to be skeptical, but it it makes sense, and won't hurt you or cost tons of money, it may deserve our attention. Do you have a link to Dr. Li or the other doctor?

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tgsmith | @tgsmith | Jul 6 5:51pm

YES, on the 4th treatment the pain started then on the 6th treatment it was BAD did not burn like a UTI it was sharp pains every time I went to the bathroom and it lasted for days, it was horrible

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mmwade62 | @mmwade62 | Jul 6 3:30pm

Yes, I feel like I have a severe UTI. I get it for six weeks and each week it got worse than the symptoms went away after two weeks.

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mmwade62 | @mmwade62 | Jul 6 3:29pm

Yes, I felt like I had a bad UTI

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sileeno123 | @sileeno123 | Jun 29 8:33pm

I completely agree with the post by mitsyginger and the BCG induced cystitis. My husband has suffered from this and is now on the same 6-9 month treatment plan. I would encourage you to mention this to your doctor.

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sileeno123 | @sileeno123 | Jun 29 8:32pm
In reply to @mitsyginger "Hi @tgsmith, I’ve learned it is widely accepted, by Urologists and patients, that any nasty symptoms..." + (show)
Profile picture for mitsyginger @mitsyginger

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…

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100% agree with this - my husband has suffered the same problem and is now in treatment on the 6-9 month regimen.

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tgsmith | @tgsmith | Jun 22 5:37pm
In reply to @safaa "Hi this my 12 Bcg.last 6 was very bad pain every time to urinate. This time..." + (show)
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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

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I’m so sorry to hear that you are having so much pain, I do understand I went through the same thing and felt the same way

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