My primary was a tumor wrapped around my small intestine, discovered in 2007. I have been Stage IV for a decade now, with metastasis to my liver, lymph nodes, and more recently very small nodules on my lung and scapula.
I was started on Octreotide, which I took for many years. My oncologist then switched me to Lanreotide. After being on that for a year, I started experiencing very painful joint pain and swelling throughout the month. I'm not sure if it was the Lanreotide or something else, but I convinced my doctor to let me go back to Octreotide. That was on February, and I do feel like the pain has gotten better.
Everyone has different symptoms and side effects so don't hesitate to let your doctor know what's going on.
As far as diet, I have always eaten whatever I want, and usually have no problems. The only thing I know I'll "pay for" is something with lots of sugar, like donuts, cinnamon rolls, etc.
Best wishes on your new journey, and always remember that NETs is NOT a death sentence! Educate and advocate!