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Posts (69)

Mon, Oct 28 6:44pm · Possible NET with No Evidence of Tumor: Mediastinal Mass in Neuroendocrine Tumors (NETs)

My wife and I have been to Mayo 16 times in the past 4 years for two surgeries and many office appts. In face, we will be there next Monday all day. If you have specific questions about staying in Rochester and getting to appts., please let me know. Its super easy and convenient. How far is your drive to Rochester.

Wed, Oct 2 6:50pm · I am not ok with this at all in Neuroendocrine Tumors (NETs)

Most insurance plans will let you go out of network for a second opinion. You can also build an argument that they don’t resources who are NET specialists. I’d be happy to help you with such an out of network letter

Tue, Oct 1 6:13pm · What topics do you want for the Neuroendocrine Support Group? in Neuroendocrine Tumors (NETs)

My wife (NETs) and I are very interested in nutrition. In 2015 and 2016 she had two open abdominal surgeries to remove her primary (ileus), gallbladder and liver METs. She has 50 litter liver NETs now. Her issue is she's had 8 partial bowel obstructions during the last 18 months. Each one causes her to lose about 5 pounds. Between these and the surgeries shes down 40 pounds. While her BMI is 23, she struggles to put weight on (food doesn't taste good) and she's worried about what might trigger another blockage. They come on light a light bulb with a pain level of 10. She usually gets IV fluids for 3-5 days to make sure she doesn't dehydrate.

Fri, Sep 20 3:22pm · Welcome to the NETs Group! Come say hi. in Neuroendocrine Tumors (NETs)

Amanda, good for you for starting the support group in Florida. I will plan to attend via conference call. Who is the NET doctor down there (I'm in Wisconsin). I run a support group throughout the State of Wisconsin. Attached is our flyer.

Mon, Sep 9 10:27am · What topics do you want for the Neuroendocrine Support Group? in Neuroendocrine Tumors (NETs)

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.