@ant12
One more thing, lanreotide/octreotide injections can really help with carcinoid syndrome -- the flushing, diarrhea, etc. Are you taking either of those? Has anyone suggested it? Your symptoms can be so miserable and make a daily social life or even going to work so challenging. I take octreotide for my lung NETs and it has helped my respiratory symptoms so much. Seems like people with pancreatic NETs or other abdominal NETs seem to take lanreotide in most of the comments I've read. Those meds help slow tumor growth as well. I really hope you find some solutions soon.