My mother (67) was diagnosed with neuroendrocrine cancer in 2004. Could not find primary - but it had matastesized to her liver. Too many small tumors in the liver to be a surgery candidate. She had one round of Chemo and then did well for a while. In March 2007 they went in to find what they thought was a small bowel intercesion. They found no intracesion but finally found small tumor (about quarter sized) on her pancreas (likely the primary tumor). They did not remove it since it was so small and not causing any real problem. But they did find that her liver has a lot of cancer in it.
Her oncologist in Nebraska has recommended doing very targeted treatments on the liver to try to kill some of the liver cancer (do not remember name of treatment - but it is the one where they block blood supply to parts of liver)
Went to specialist in Iowa City that suggests Sandostatin and further tests to determine if she is candidate for some clinical trial drugs.
No one will really tell us too much but I do not think the prognosis is very good. She has had many illnesses (I think related to the cancer but that has not been confirmed by her doctors). From what I can tell - there is real concern that her liver will fail. Will look into Ambrotose. Will also ask doctors about the Excel Diagnostic Treatment.
I wish everyone with this disease well. It has been a trying couple of years for us. Not many doctors seem to know much about this cancer and there seems to be no standard protocol for treating it. The advice gathered here is appreciated. I will continue to monitor. Would love to hear more results or finding on the effectiveness of the Excel Diagnostic Treatment.
Thanks and good luck to all.