What topics do you want for the Neuroendocrine Support Group?

I, too, am very interested in learning more about nutrition/diet to know what to eat or not eat with my NETS of the small intestine. I have a conflict with the Thursday, Oct 3, 5:30 EST informational meeting. Is is possible to get a transcript of this meeting, please?

I like info on dietary suggestions. In the past few months I’ve been diagnosed with Gastric NET1, Chronic Gastritis, Chronic Gastric Inflammation, Gastric AutoImmune Disease, Barrett’s Esophagus. I have nearly daily bowel issues, usually occurring multiple time if not all day.

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.

@amandafl and @michellewalsh: do you plan to record and/or transcribe the meetings? It is easy to record them. Transcribing maybe not so easy.

I would like to learn about various ways to deal with pain. There seem to be several medications you can take with varying side effects. Some, like constipation, make the pain even worse. What other options are there? We have tried CBD, Essential Oils and that has not helped. Can we talk about pain pumps and how they work? Appreciate your putting on these support group meetings. I wish I had known about this when we started our journey at Mayo in 2016!! How come no one told us about Mayo Connect and the support group????

Hello @collielady

I would encourage you to check with the NIH in Bethesda, Maryland. They have been doing research studies on families with NETs. Here is their website for clinical trials,
https://www.nih.gov/health-information/nih-clinical-research-trials-you
Also, have you had any genetic testing for yourself? If not, you may want to discuss this with your endocrinologist. I personally believe that all of us with NETs need to have an endocrinologist on our medical team. They have invaluable insight and knowledge into the workings of the body. I think of them as the IT professionals of the body system.

To @tomewilson and All,

I see that many of you have mentioned weight loss, difficulty eating, etc. as a result of surgeries for NETs in the digestive tract.

On Connect we do have several discussions about this topic. Many of these discussions are related to surgeries for diverticulitis and/or other digestive tract problems but I've found them very helpful for me. (I have also had two invasive surgeries for NETs in the duodenal bulb and then a third surgery that was done endoscopically.)

Here are links to some of these discussions:
https://connect.mayoclinic.org/discussion/slow-transit-constipation-and-surgery/
https://connect.mayoclinic.org/discussion/chronic-small-bowel-obstruction-from-adhesions/
Feel free to not only read the posts but also to ask questions of the Members. You might find @thull to have some good ideas as she has had many surgeries and has dealt with these problems for many years.

Thank you.

More topics from dietitians/nutritionist are welcomed! 🙂

Thanks for your reply, Teresa @hopeful33250. I contacted NIH a couple years ago about their research in familial carcinoid cancer. They were very interested in having my family join the research. But they needed proof of two relatives with NETs. And my half-sister refused to sign the release of information so her biopsy reports could go to NIH. And at that time they were not including Merkel Cell Carcinoma in their criteria. Needless to say sister and I were very disappointed. So now my focus is in finding out how family members could be checked for NETs so a diagnosis could be made early.
BTW - do you live in Jacksonville Beach?