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BCG treatment

6 months 1 week ago #55358 by sara.anne
Sorry to hear that you’re having problems. You may want to discuss with your doctor the possibility of having the BCG dose reduced. Studies have shown that as low as 10% of the initial dose can still be effective. I was down to 1/3 the initial dose by the time I had finished.

Some patients find that they just cannot tolerate any more. My advice would be to try a reduced dose. Then if it really is unbearable you may have to decide not to do any more. You will still have had a good shot and it can be effective.

Wising you the best.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 months 1 week ago #55357 by Susieann4
I have completed my original 6 infusions of BCG as well as my first cycle of 3 treatments that are scheduled every 3 months for 2 yrs. The more treatments I've received, the harder the side effects. The first 6 were virtually unremarkable, except for the frequency. Wish I could say the same for the last 3. Each one had the normal, fatigue, burning and frequency with bladder spasms. They each went away within 5 days, just to be ready for another treatment. After my 9th treatment, I had the same symptoms but with a lot of pressure in my perineal area. The burning and frequency improved as with the other treatments but the spams and pressure did not leave me until 3 and a half weeks. The pressure felt like my bladder was falling out. The more I was on my feet, the worse it got. I lived on Azo (which is the generic for Pyridium and Ibuprofen or stronger for weeks. My tolerance is really strong, I'm a past cancer survivor times 2, each with chemotherapy and radiation with the first. My frequency continued every 2 hours for the 3 and a half weeks also. It's been 4 weeks since my last treatment and I can now say I feel back to my normal self. I had called my Dr after 10days, he ordered a culture of my urine which was negative with no suggestion for relief. I have a cysto in 3 wks, when my Uro Dr and I have to have a long chit chat cause I am thinking this was alittle extreme.

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3 years 4 months ago - 3 years 4 months ago #49035 by Jay
Basically it sounds like for the first year they are the same, BCG maintenance and a cystoscopy afterwards? I'm scheduled for a cystoscopy 4 weeks from tomorrow. Then it seems the 2nd year changes a bit. I'll have to see what is in store for me after the cystoscopy and of course the results! Thanks, Jay

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3 years 4 months ago #49032 by sara.anne
Hi again, Jay!
Yes, the BCG does add up and often gets more uncomfortable. But just remember that you are really going after that cancer! You might ask for a reduced dose.

There are several different maintenance protocols. The one I was on was the initial 6 weeks, then every three months a series of three treatments until two
years had passed and then it was over. I think you may have confused the cystoscopy schedule here which is usually every three months for two years, every six months until five years have passed, and then once a year forever.

You can do this!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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3 years 4 months ago #49031 by Jay
I was wondering how to title another BCG topic and just saw this one.

I wanted to ask if I might have misunderstood a post from a few months back. I finished 6 treatments in February and read that sometimes the burning/pain/frequency get worse with each treatment. So, I was thinking each week would get worse, with the 6th week being nasty, but all the weeks were about the same.

I just finished my first 3 week maintenance. I don't remember the 6 week treatment being this bad. In fact, I only made it through 1 hour and 40 minutes of the 2 hour treatment this morning. The burning/pain/frequency afterwards is tolerable, but nasty. Is it each "treatment/segment" where it might get worse. Is it my next maintenance that might get worse? I know everyone is different, just wondering about other experiences?

My Urologist says there is no really set schedule on the maintenance, but I thought it was every 3 months for the 1st year, then 6 months for a year and then yearly?

Thanks, Jay

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3 years 4 months ago #49030 by irishlasskathy
I truly appreciate the quick response. He is just about to go on an every 6 months series of treatments. The last 2 treatments were at 1/2 strength, so maybe they can cut it down even more. I keep trying to encourage him, but it's hard seeing him go through all of this for such long periods of time.
Thank you for your encouragement and positivity.

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