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.

I am a newbie, having had a couple of TURBC's and now on the BCG. Cancer has not reached the muscle layer but is high grade invasive. My question is - I am about to have my second infusion of BCG. My question is: What is the debate about 15 infusions versus 27. 

I will be fascinated to receive any insights.

Best

RobS

I wonder that two. I asked the nurse at my second infusion of BCG last week. The answer was that 'It is a postcode lottery', something to do with regional supplies of BCG. I am being treated at the Churchill in Oxford. Does anyone think that is the case?

Best to all

RobS

Hi Robs, I am on the 27pathway. I dont have any insights into why some are offered 15 . Wonder if it would be worth emailing your consultant ? It would be interesting to get the answer ! Take care 

Hello,

The CNS I see said that in her experience, for many 18 is generally the maximum the bladder can take before the inflammation and side effects become too great. What happens after 18 was by case. 

She also suggests taking paracetamol before the BCG. 

I asked the nurse who administered the last treatment and she said it was a bit of a postcode lottery. Whereabouts in the country are you?