Hi Maria957, I have tried everything you can think of.
A combination of Afinitor, Anastrozole, Xeloda (low-dose) and Octreotide. It was working for awhile. Then progression began again.
I have a bone ablation for my sacrum area which is super painful right now (heat to kill tumor, then an expoxy-like substance used in joint replacements will take the place of the dead tumor material) scheduled in a week. It worked before, but my spine is peppered with bone mets (I believe 99% are within the bone). They expand as they grow and press on the bone outward and press on nerves, too. You simply can't do this with all of them, just the most painful. It is done by an Interventional Radiologist.
I am hopeful Lutethera works. I'm scheduled for Dec. I'll check in after my first treatment.
Good luck fellow-NETs!