Bladder cancer BCG treatment

Hello Phone and welcome to the group although sorry to hear you are in some discomfort with the BCG treatment. We know some people suffer more than others and do not go all the way. Not had this myself but I am sure others will be along to share experiences and advice. Best wishes.

Hi Phone,

Welcome to this friendly group.

Sorry to hear that you're having bad side effects. I was scheduled to have 27 but have only managed 18 due to inflammation of the bladder.

Many trusts also give various level's of treatments. Some give 15, some 18 and so on. Probably due to costs.

Hope your side effects ease soon.

Trevor 

I didn't have BCG but it was an option for me, so I did do some research at the time. I think there is some debate about how many are necessary. Some experts say the initial course is the most important, and the maintenance sets are optional extras. Some people do give up because of adverse side effects. If you are finding it intolerable, I doubt you need to press on for the full course. 

The stats on bcg are quit clear. It stimulates the immune system to fight nmibc. For some people it does not work, for others it only works for a while and for many  it produces a sustained disease free response. If its working why stop, in fact Dr Lamb who developed the SWOG protocol recommends annual bcg after the end of the three years on the basis of if its working why stop. I have had 18 so far with no reccurence and am due another 3 soon. Has it been enjoyable no. Has it been horrific no. A few days of bladder irritation and flu like symptoms is a small price to pay to avoid cystectomy,radiation chemo or possibly death.

If you can tolerate it keep going. By the way there are lots of Americans who would give their right arm for bcg as there is a shortage in the states even though bcg is produced there yet another example of how screwed up they are at the moment. 

Best regards

Well said. Stay well.