Thanks for your post.
I am trying to get my doctors at the hospital of first choice to advocate with my insurance company to cover the cost of getting both Mitomyicin and BCG, on the logical ground of pay now versus pay a lot more in the eminent future if I have to have a cysectomy. I am hoping it will work. My hospital of second choice, Memorial Sloan Kettering (only because of hassles to get there), I am told has both drugs. So I will do that as a back up plan. I feel lucky to have access to many hospitals in the new york metropolitan area.
All of this "case management" is positively exhausting!
18 tumors removed as of 12_11_14
18 rounds of drug treatments (M-C / BCG ) as of 12_11-14
Dx 7/23/12 After months of blood in urine
8/6/12 TURBT removed 7 Papillary Tumors, all low grade
As of 12-11-14 18 Tumors removed (1 high grade, non muscle invading), 3 TURBT surgeries, Many fulgarations in office.
As of 12-11-14 6 instillations of Mitomyicin C, 12 installations...
I went in for my 5th BCG Tuesday at Brigham and Womans in Boston. I was told of the shortage the week before and they were making sure they had enough… They really had no answers as to what was going on.
This week they had more news…. it all boils down to the dollar…. the company in France that produces it for our treatments and for other uses.. is not making a big enough profit! So they are hoping another pharm. company will buy them. BWH does have enough to finish on going treatments but any new people coming in for it will not get it.. Miacin might be used although I was told it is not as strong…. thats my update!
1-15 Cauterized for clotting
2-15 Removal of Right Kidney and Lymph node