Do BCG side effects vary greatly?

Well done Mark, I agree the side effects of BCG treatment varies from person to person. I am currently starting my final BCG maintenance programme. A little bit of blood is normal .Don’t forget the BCG is a live bacteria that attacks the meanies in the bladder hence slight discomfort and blood. Stay well Garviv

Hi Mark,

Reading these forums for a little while now and would say that the side effects do appear to vary. I suspect that people who sale through it don't come on to post because they have little to report.

I've personally found that the urgency continues longer the more instillations I've had. The first 24 hours are the worse, then things improve a lot.

My last two biopsies found bladder inflammation, which I think meant retention was harder. Which meant a trip to the loo during the night, but can't complain really. 

I'm now on 6 monthly intervals between sessions which helps.

I've currently had 15 of 27. Number 16 will be in January 2025.

Here's hoping that your BCG course has no problems.

Trevor 

Thanks very much Garviv  and BFG .
Indeed, the whole bladder cancer treatment thing -- even when it's going well -- is just plain odd.
Today, for instance, I had some odd-looking urine. Like, really cloudy ... to the point of almost a haze or light scuzzy film on top of it.
But, considering nothing's hurting, I've got no fever and I get a check for a urinary tract infection every Friday before that day's install, I kind of tell myself to just worry less and drink plenty of water.
I mean, I think we're always curious about our own condition and we tend to try to figure out what every little thing means ... but it's kind of naive to suppose that we lay people can discern much from day to day.
Sometimes, for me, I think just relaxing is the toughest part.
But, so far so good ... and I'm thankful for that. 

Hi Mark, I just want to say try not to worry about side effects, I had my 10th BCG treatment on Friday and the only side effect I have is urgency for roughly 12 hours like you I worried about not having any reaction. But I'm delighted to say I have had two cystoscopies since starting the BCG treatment and both have been clear. Wishing you all the best as you travel along this journey. Lynn

Urgency for varying periods of time is inevitable as is some burning and discomfort in the urethra which lessens over time. I am just progressing to six month intervals with my last treatment ending in August. I found the last set of treatments quite severe with burning, penile and prostate pain (manageable), extreme fatigue and flu like symptoms which subside after a couple of days. I am only now beginning to feel almost 100%. The upside has been no recurrence of a tumour since starting the treatment. I have experienced a cumulative effect especially with the last set of treatments. 

 MarkinUS Hi Mark. You will often hear that “many just sail though BCG treatment”. This is true, however it’s a sad fact that over 40% of folk being treated with BCG never finish the full course, This of coursedoes not mean it’s ineffective, although something like 20% of people on BCG end up having a RC. BCG can trash your bladder, meaning it has to be removed - this happened to me. So a lot of different side effects happen, some serious, some not. Hopefully you will just sail through and have a good outcome. Leo

Very timely and grateful for this post. Just had number 11 couldn't keep it in for more than an hour which has never happened before very frequent and urgent passing very little at the moment. First 6 were flu like and fatigue last three were turned right up to 11 in the spinal tap sense followed by an infection. Turning up and doing our best is about the sum of it. I can't make rhyme nor reason of it what each one will bring but 2 clear turbts and a clear cyscoptomy after 14 months makes it worth it. Though I might change my name by deed pole to Mr lemon barley water

 Thanks Andy E 

My No. 3 was yesterday.
Side effects did indeed seem to rise a notch.
A little bit of bright red blood from the catheterization; I think the tech had a hard time getting past the prostate. That's better by quite a bit today.
Some cramping or spasming of the bladder last night. Today, sort of steadily sore or irritated, for lack of better word.
Can tell the battle inside the bladder has begun, so to speak.
Not complaining at all. Happy just to be making the effort to keep the bladder. Taking it easy, hydrating and back to work on Monday. I feel pretty fortunate.
Really appreciate having this forum to talk about it all!  

Hi MarkinUS , I have had 13 rounds of BCG since last August. If you click on my profile I have recorded my experience and varied reactions. I hope this helps give you idea of what  can happen. It is a bit of a rollercoaster tbh , but i am really happy to keep going with it. Good luck with your next one, I hope it is easier for you.