BCG RESTART

Hi Potter100. It's not the first time people on here have commented on the admin side of things, and the poor communication between different hospitals. They must believe that further BCG treatment may work for you. I believe that after the initial standard treatment then further treatment is tailored to the individual. Wishing you well with it.

I can't answer all your questions but my husband had an initial  6 week course of bcg followed by a flexi 8 weeks later As this was clear he had  3 more bcg 12 weeks after the original 6 and following another all clear 3 more courses of bcg at 12 weekly intervals he then went on to 26 weekly bcg He has had 24 bcg in total and is due a flexi in the next month If it's clear he may have a final 3 bcg or as it will mean he has been clear for 3 years the consultant may decide half yearly checks will suffice 

I have confirmed that this treatment is in accordance with the Nice guidelines I've been a bit of a pain on the admin side if I think dates are being missed

I hope bcg works for you as it has so far for my husband I'm no expert obviously but I would hope bcg treatments still work if administered after a longer gap Hubby has been allowed to go 14 and 29 weeks when it should have been 12 and 26 as we have been on holiday and our nurse was quite relaxed about it 

Best wishes 

Wilbert

Hi Potter100, the protocol Wilbert described is exactly what I have been following. Initial 6 followed at 3 monthly intervals by sets of 3 maintenance doses 7-15. After this I was moved to 24 week intervals. I am currently mid doses 16 -18  But unlike Wilbert's husband I haven't stayed clear. I have now had two reoccurences. Last one removed in September, which had to heal before next doses can be given. So my 24 week interval has stretched to 30 weeks.  Today I asked my CNS if I would continue having a 24 week gap between doses. She said it would depend on my next cystoscopy. If clear it will be 24 weeks, but if there is another reoccurrence they could dose at 12 weeks. I have also heard that they can sometimes repeat the initial six week run. So it appears to be flexible to the individual as Rily said. Hope you can find someone you trust at the new hospital...a new clinical nurse maybe? Best wishes 

Hi Potter 100, You don't and nor has anyone else, mention any Dr/nurse mentioning Mitomycin. I have not checked NICE but feel it is worth at least asking the question as to whether this would be appropriate to try at least before going down the radical cystectomy road. It has so far stopped any recurrence in my husband who had had CIS as well as papillomas galore before the first TURBT and 6 BCG, followed by another papilloma and TURBT. Ie, the 6 BCG did not work, though they did offer more as an option.

The Mitomycin administration is into the bladder so no whole system side effects other than fatigue which varies from dose to dose and person to person but mostly goes after the course.

All the best

Denby

The spacing of BCG sounds OK from what I've heard. It's the first 6 that are the most important, which you had. The next dose would normally be after another 12 weeks, provided clear cystoscopy, but you needed the TURBT instead. It's not unusual to have a break after TURBT to allow for healing.

It does sound a bit chaotic, might be worth contacting PALS to get the protocol established & ensure everyone has the correct, up to date information. Hope treatment continues well - CIS is the riskiest form of BC & does need close surveillance.