Shortage of BCG Immunotherapy

Hi Clam, just letting you know in 2013 there was a world shortage of BCG, it effected my treatment so I ended up having just 15, I was also grade 3 (not stage as you said) and happy to say I had my 20th all clear flexi last week. I did hear that some hospitals have been giving 15 BCGs instead of the 27. The point of my post is just to let you know I’ve been clear with not having the full course, I hope they give you a few more, good luck x

Dear Clam, All I can offer you is this but it seems highly applicable IMHO. My husband had High risk [it's high risk of recurrence not anything worse than that btw] grade 3  bladder cancer, non muscle invasive though at some point there was 'CIS ', carcinoma in situ, about 4 years ago though we are pretty sure he actually has had it for years before. Local hosp where we used to live had treated frequent peeing with what we now recognise was a TURBT but never mentioned cancer nor gave any follow up. So after moving area when the frequency recurred he got a proper diagnosis. His bladder was chock full of papillary tumours. He had a TURBT and 6 BCG. At the cystoscopy 6 weeks on they found a new one that had popped up in that short time. Fortunately as he had strictures that made cystoscopies challenging he was under GA so that became a TURBT on the spot. They did then offer him cystectomy as one of "3 equal choices with more BCG or Mitomycin". As he personally didn't want cystectomy if it could be avoided he opted for the Mitomycin. 3 years on and a couple of 'red patch scares', which only meant next check at 3 months instead of 6, he is absolutely fine and has avoided major surgery.

So in conclusion why not ask if you could be considered for Mitomycin now?

best wishes, 

Denby

Thanks Sue, it is comforting to know and I'm pleased for you, must be great getting all clear.

ill try and persuade them to give me another 3 after this lot if possible.

thanks Denny, I had thought of that as an option but had read the most efficient treatment for highrisk grade 3 was BCG good to hear there may be options I haven't tolerated my 8th BCG too well so might be good to have something less harsh,

thanks for taking time to offer reassurance

Clam

No worries Clam, it's why I still stay on here after this long, because not all doctors seem to offer this really useful option for whatever reason. And for what it's worth my husband's good outcome has been despite never being able to keep the chemo i for as long as recommended. And they tried it first warmed up which his bladder rejected very definitely and instantly! so the consultant said just go for normal temperature then. We used to travel home with plastic and a towel on the car seat as he often couldn't make it only 35 mins home, then he would have to shower down as the Mitomycin is not kind to outside skin at all. Nowadays he uses Tena Men throwaway pants, they are really good if caught short, at 77 with the common  benign enlarged prostate.

best wishes, 

Denby

Hi Clam, because BCG can cause serious long term side effects by inflaming the bladder it appears to have become an NHS (also US and  EU) recommendation to reduce the protocol to 15 doses. This policy change seems to have happened during summer of 2020. At that time I had already had 18 doses. My hospital gave me the choice of stopping then or continuing. Since I had repeated recurrences during the treatment and no problems tolerating BCG, I opted to follow the 27 dose route and my hospital agreed to this. My final dose was August 2021. I had an all clear cystoscopy in November but I'm not counting my chickens. One step at a time. Good luck with your treatment. Hx

That's been a long slog with lots of concerns along the way, glad you had an all clear in August, fingers crossed it stays that way for you. I'd be happy with 15 as research seems to suggest that's adequate   bit worried 9 is maybe not enough, I read that for Hg T13 and shortage of BCG that mandatory cystectomy is recommended! Such a stressful time for us all mid treatment and for our family and friends too...enjoy Xmas knowing you are clear and had 27 Herothedog. Thanks for taking time to reply to my message.

Hi clam I have just finished my 12th bcg treatment..I wasn't told that there was a shortage but the nurses apologised to me for running late but they said that the medicine was very late coming in so it had held them up ..I hope all goes well for you take care love Tina 

Hi Tina, glad you got another three, I have been a bit unwell after the 8th and not looking forward to the 9th, how have you tolerated it? good to know it is helping though and fingers crossed you get the next three.

I've had 15 BCG and as long as the next cystoscopy is clear, I will be getting another 3. No talk about shortages or stopping at 15. As usual, it's different practices in different places. Hope your 9th goes ok.