Bcg side effects

Hi KB, like you I had T1hg3 tumours removed in Dec 21 with 6+3 BCG installations. The effects of BCG on the bladder making you want to pee regularly is exhausting but I found that taking ibuprofen helped me to deal with the pain and irritated bladder but the treatment can be different for everyone. After a few days the symptoms subsided for me getting me to 90-120 mins between visits to the toilet, a bottle or bush if I ventured out (fortunately I live near to the countryside), planning your journey around convenience stops becomes the norm. At my inspection check in September I was told that I'd be getting a further 3+3 however these were cancelled due to a global shortage of BCG which could be why you're being given the "many don't complete the course due to side effects". Yesterday I had my quarterly inspection which is 6 months after my last BCG treatment and I'm pleased to say that I'm still clear of cancer, so while I can go through the night without peeing, going out into cold weather does make me feel like I need to go to the loo more often. I hope you feel better soon.
Stuart   

Was considering cancelling further bcgs due to pain etc it's quite intense. Will try ibuprofen for next one. Thanks x

Hello K.B, my clinic doctor did say that BCG does have the effect of shrinking the bladder. I had biopsies taken last July and the surgeon managed to stretch it so I can hold more liquid. It did improve but I do have bouts of frequency, more to do with the amount of water I consume.

My BCG was halted after 14 instillations because it inflamed my bladder. I am currently cancer free, due for a cystoscopy end of this month. It has caused me pain and discomfort long term but of course it affects some patients more than others. I'm one of the unlucky one's in that respect but thankful it does seem to have done what it's supposed to do.

I am most of the way through 27 BCG treatments & have had 2 operations plus multiple camera jobs. Since I was diagnosed I have become registered disabled and have found a number of side effects, feeling washed out, sore knees, joints & other difficulties plus various pains with the treatment process. In my case none of which prevent my treatment.

From what I have read there is quite a high rate of people not being able to complete their treatment for various side effects & that some other recourses will be made available.

You have done really well to complete 27 instillations. I agree with you, when I first realised how much the BCG has bad after effects I got the impression that I was an odd one out. But after hearing people's stories on forums such as this I think the problem is a lot wider than I'm led to believe. Of course I'm not seeing it as a conspiracy but when I raise my concerns I get told there is no silver bullet to stop the pain or discomfort. A little help in pain control would help, all I'm told is that it will clear up on its own, if that's so it's taking a very long time! I do take paracetamol and perhaps Ibuprofen, neither touch the sides. Very occasionally I also take a cocodamol and that can help. I am due another cystoscopy at the end of the month and will of course see what the outcome of that will be.