BCG after effects

Hello again Phil G . Really sorry to hear you are still having really bad adverse effects to the BCG. It's a few weeks away, but hopefully they may come up with some answers at your next flexi. I'm sorry I can't offer any practical advice. I just wish you well going forward. Best wishes.

Hi Phil,

Welcome to this group but sorry to hear about your issues with BCG.

Your side affects sound similar to mine, but don't go on for so long and are bearable. I've had 15 instillations and my last one was at the end July 2024.

Again my last biopsy showed an inflamed bladder also. I still have stinging when I wee, but no other pains.

It's very tough when you can't sleep, I do wake during the night with urgency, but not as often as you've been. I can only imagine how tired you must be.

I hope things start to improve for you soon.

Take care.

Trevor 

Hi Phil, I have had my bladder removed, and now have to wear a bag attached to my stomach. I was scared before I had the opp but was advised by three doctors to go ahead with the opp. Well nearly six months have passed since I had the opp, and I am doing well. Part from a few leaks from the bags, which can be upsetting I would advise you to speak to a doctor  about having your bladder removed. I am a old git of 84, I now have no regrets of the opp and enjoying life to the full. Good luck and well wishes from Tom

Hello Tom, so pleased you are enjoying life and well. Garviv 

Tom 

my surgeon has twice said to me you might have to have bladder removed 

as time goes by I’m  now leaning towards that option as it might give me more quality of life 

phil

Hi Phil,I was told in 1997 that the bladder would have to come out in the future due to chronic cystitis.I wish they had removed it before I got cancer but it’s a huge relief to have a better quality of life.I was in so much pain for over 30 yrs plus frequency and urgency.I don’t miss my bladder at all.Cystectomy is a big op though.Best wishes Jane 

It may well do that

PhilG I have packed BCG in, no quality of life with all the side effects. And constant worry about progression. Personal choice though. Leo

I dread the BCG treatment as the side effects get worse each time regardless of the time between them

good luck to you Leo

phil

Hi Phil, I've had 21 doses so far and after the last 6 finishing in July (which was a reinduction course) I found it really painful and constantly having to pass urine, at least half hourly, and it hurt a lot. On the recommendation of someone else I tried Ural powders, which you can get from Amazon, and found that it really helped. Good luck and hope it feels better soon.