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Eating right with Neuroendocrine tumors
Hello all, I’ve noticed that there have been quite a few questions on here about what to eat and what to avoid when you have Neuroendocrine tumors. Today I was going through a stack of papers in my kitchen cabinet and found an eating plan I’d printed out after my second big surgery in 2019 to remove 11” of my large intestine and my appendix. So got on the website and it’s still there. Go to http://www.NETRF.org (Neuroendocrine Tumor Research Foundation), click on “For Patients”, then “Living with Nets”, “Nutrition”, and finally “Eating Right with Neuroendocrine Tumors”. There’s a list of what foods to eat and which ones to avoid. It was a good reminder for me.
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I’ve just found this support group, and none too soon; I ended up in my local hospital
back in October ‘21, I had eaten some fermented cabbage (Kimchee from my local health food store) the day before, and I developed a hypertensive crisis’ requiring emergency transport to the hospital. I would later learn that kimchee is to be avoided if you have a net, which, after a 24 hour urine collection, which showed very high levels of epinephrines and norepinephrines along with other levels that were abnormal. At discharge I was informed that I most likely had a PPGL, but that they didn’t think it was in the adrenal medulla, but they also
said they didn’t treat this disorder; I now have this list I refer to so that I don’t eat any foods or drink any beverages that contain tyramine, because if I do, I’ll end up in the hospital, and I have already been to my local hospital via ambulance over 20 times from 2019-2021. I can’t believe that there are no specialists in my state, and so I will be traveling out of state in the next couple of weeks to a hospital that supposedly treats this condition, but they’re not a certified center of excellence.
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