I have been heavily engaged in NETs since my wife was diagnosed at Mayo Rochester in the fall of 2015. Since diagnosis, she has lost 40 pounds. While she had some extra she was within the normal weight range. The weight keeps slipping off and its harder and harder to regain. She has suffered from bouts of partial blockages that last 3-5 days and cause further weight loss (about 5 pounds each time). She receives Octreotide injections monthly 30 MG LAR.
Recently I was reading a publication from Tara Whyand who is a Oncology and Neuroendocrine Tumor Specialist Dietitian at The Royal Free Hospital, London (since 2012). She is considered a leading R.D. for NETs. It has been our experience that very little time and attention is placed on nutritional aspects of patients with NETs. For example, I just learned that those receiving Octreotide injections should get their B12 checked every 18 months. NET, NET (pun intended), more discussion around NETs nutrition would be helpful in my opinion.