On 5/13/2006 Tigerlillygal wrote:
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
Hello:
My husband had surgery for the same over a yeer ago and is recieving Sandostatin shots. He had liver mes and they removed the tail of pancreas and spleen. He has no symptoms and his labs are normal., so far no progression. I would appreciate any info. in case things change.
Thank you.and good luck.
Mary