Poorly Differentiated Neuroendocrine cancer with Well to Moderately Differentiated Adenocarcinoma -

SweetieStarr

Hello everyone - this is my first post here.

My mom has poorly differentiated (high grade) neuroendocrine cancer with (we think) a mid-ileum gastrointestinal primary and adenocarcinoma (lung; well and moderately differentiated) all with a KRAS mutation.  The cancer is metastatic - currently in the lung, brain, and a some in the bones.  Previous surgeries have removed tumors from the chest wall and small bowel.  (I have a long and frequently updated version of her history at http://www.sweetiestarr.com/savemom/wordpress/)

The two removed tumors had a KI-67 of 55% and 50% and 20 to 23 mitosis per 10 power field.

She has done 4 cycles of CAPTEM (Xeloda and Temodar) and 4 monthly sandostatin LAR shots, but this regimen does not appear to be working well.  Scans after the 3rd cycle showed progression, and we are waiting for the results of more scans.  

Her doctors are fascinated as they have not seen a NE diagnosis like hers.  We also have not heard of anyone else with the same diagnosis and I'm hoping I can find someone.

Has anyone else had a diagnosis like this?  Can anyone recommend any other treatment options for her?

Thank you so much for reading and for any help you can offer.