I would like to know if anybody is currently receiving BCG treatment as I am not being offered a second course at The Royal Free in London.
FormerMember
Hi WCG,
Sorry to hear that you are feeling uncertain about your treatment plan. I hope it helps to share things here on the Online Community. I'd recommend you join our Bladder Cancer group and post your question there - it's a really good place to get information and support from others who are going through similar experiences.
BCG is nearly totally unavailable at present due to failure of supplies worldwide. There are stories around as to why but it is best to go to the American websites for more reliable information as it appears to be a ver cagy subject in Britain. Consultants and hospital are saying as little as possible and even Macmillan support says little.
The emphasis is on rechecking everybody being treated with the drug and it seems that the main substitute is the chemotherapy drug Mitomycin C or surgery.
BCG supplies in the quantities required will not be available for at least a year. I have started on Mitomycin monthly and will have my next check cystoscopy in 6 months time as fortunately I am at present clear.
Thank you mic. I'm pleased you agree the situation is confusing but I now have some positive news (I think) which might be of help to others; I am in the process of transferring to The Lister hospital in Hertfordshire and my MP suggested I asked PALS there to investigate availability for me and they let me know the hospital has stocks of OncoTice (MSD) which I'm assuming I'll be offered when my second course is due in Nov.
It all seems so hit or miss but I think it's worth being proactive if one has the energy.
Best wishes,
WGC
