susie54

I have a friend who was just diagnosed with a similar condition to yours. I don't know her stage but she starts treatment with Octreotide in January. I love her dearly and was just looking for folks with similar experience so I might be able to help her.

I too have PNET. Found it kinda backwards though...thought I had live r cancer, resected 3/4 of the liver, then learned it was PNET. I had a Whipple and have had cancer come back 3 times, with 2 more liver resections, radiation and now on Affinator oral chemo. Thanks for the resource ACOR. Org. Didn't know about them.

Hi Susie54- it looks like we have a very similar diagnosis. Have they put you on Sandostatin? Very best wishes on your journey!