Thanks Rosemary... I have already decided not to take the 3rd treatment of mitomycin. Can't find any uro that is using it as a "preventative"... and that 2nd treatment really tore me up.. Have not talked to the uro yet...
Retired USAF Col, father of 4, grandfather of 9, greatgrandfather of one.. Enjoying life to the max...
Beglin.....Wow...thats a lot of mitomycin....i've only heard of it being given once if it warrants every 4 to 8 weeks. I'm with Rosemary...i'd get another opinion. This is a drug that keeps on giving as it were...has long range effects which is why i think a lot of uro's are discontinuing its use. You should not drink any alchohol or take any aspirin while on this therapy. And you have to be careful not to be around anyone who's been newly innoculated..say a childs innoculation.
I really don't understand your doctors thinking on this if the cancer is superficial. It seems excessive to me ....i'm not an expert...but i do think it warrants another opinion. Pat
Rosemary said "Why did they discontinue the BCG? Because of chronic irritation? I mean, the burning is really intense with each succeeding treatment, but, we've all been there...."
I had 21 instillations of full strength Tice BCG within the first 2 years of my diagnosis without any of the problems Rosemary has encountered. I did have some feeling of urgency and a bit of burning if I did not drink enough water afterwards. There are some people very sensitive to BCG. If I had the problems Rosemary had I would discontinue use. It seems in your case, Rosemary, BCG is more caustic to you than the Mitomycin. The mitomycin has kept you from having recurrences. I have had low grade recurences with the many doses of BCG which I now learn is not very effective with low grade papillary bladder cancer but rather one dose of Mitomycin after TURB has been very favorable to those who have had it and it has prevented recurrences. When I have my next tumor removal, I will certainly consider the one dose of mitomycin if the doctor recommends it or the newest preventative of recurrences for low grade which is in a clinical trial III. The name of that is Eoquin. Eoquin has even shown to completely remove papillary tumors chemically without any surgery. Unfortunately it is not used in that way in the United States. Those of you in other countries should check that out. Rosie