Just thought I would contact this group to say Hi. I was diagnosed with NETS about a year ago. Before that, I was diagnosed with MEN1, a condition whereby there are tumors on many of my hormone-producing glands—parathyroid, adrenal, pituitary and pancreas. I have had a number of surgeries to remove tumors on the parathyroid and adrenal, but the tumors on my pancreas have spread to my liver. Hence the PNET diagnosis. I have been injected with Lanreotide on a monthly basis since my PNET diagnosis and my quality of life has not changed, although I have one minor side effect which is manageable. Most recently my oncologist has suggested that I take Afinitor along with my injections. Side effects can become increasingly bothersome. I have so many questions and concerns, mostly regarding my quality of life. Has anyone out there had an experience with the Lanreotide-Afinitor combination and did you have serious side effects? And in general, how do you deal with this seemingly overwhelming diagnosis?

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