Neuroendocrine carcinoma: liver, maybe pancreas, one of my lower vertebrae

tolje127

I was diagnosed with neuroendocrine carcinoma last August (2012) when a scan revealed a large mass in one side of my liver.  The first recommended treatment was to insert radioactive isotopes into this mass to try and shrink it, which we did, in preparation for a later surgery to remove it.  Surgery was scheduled, but three days before it was schedule a pre-op scan showed some "suspicious" spots in the ohter side of my liver -- and additional spots on my pancreas and one of my lower vertebra.  Have been through three cycles of oral chemo -- Xeloda and Tamodar -- and a scan after the third cycle showed the mass in my liver had shrunk to half its former size, and no change to any of the other spots.  I'm continuing the same chemo treatment -- after the 6th cycle, we'll do another scan and see where we stand.  I'm trying to stay positive and grateful that my condition isn't getting worse, but of course, I'd love to talk with someone who has, or has had this type of cancer -- it's a scary thing to live with this not knowing what the future holds.  If you'd like to contact me, please use this board or my email:  tolje127@aol.com.