I was diagnosed with islet cell somatostatinoma in 1998 when the tail of my pancreas was removed. They said I had probably had it for 10 or 15 years. It had appeared in one lymph node. In 2002, I was told it had spread to the liver and surgery would not help since there were multiple tumors in both lobes. Now, they tell me I have 2 to 3 years left.
However, I just went to a private laboratory in Houston where they are doing a treatment protocol involving a form of sandostatin and Indium-111. The tumors have receptors for the sandostatin, which carries 100 times the radiation normally given, right into the tumors, without affecting healthy tissue, I am told.
I do not yet know the outcome of this treatment. Also, since the drug is still considered "investigative", many insurance companies will not cover it, and it costs around $20,000.
The incidence of this caner is about 1 in 40 million, so not many doctors really know much about it and not a lot of time or money has been put into developing treatment for it.
I have been receiving Sandostation by IM injection since 2002, and have not had any discomfort whatsoever, so far.
If I can give you any more information, I would be happy to have you email me on this forum.
Marie