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Neuroendocrine Tumors (NETs) Support Group

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Coninually low potassium
Have 5 nets in liver, lymph node, and kidney. Diagnosed almost 2 years ago. From at least then--and maybe before--potassium has been either too low...
Last active: May 30, 2024
Discussion
After liver embolization: Looking for the best diet + food suggestions
We are looking for the best diet or food suggestions for after liver embolization. There is no nausea but still very weak. Monthly lanreotide shots...
Last active: Dec 11, 2023
Discussion
Should NET w/liver met patient stop rx that has Seratonin?
I have received Samotuline Depot injections every 28 days for a year. I have avoided Serotonin in my diet, but do I also need to...
Last active: Dec 16, 2025
Discussion
What is the best treatment for carcinoid tumor in mesentery?
I am going to have to seek a treatment; what do you suggest1tumor.I have a carcinoid tumor in the Centrist part of my body and...
Last active: May 19, 2025
Discussion
Case manager provided by your health insurance plan
My husband was diagnosed with grade 1, stage 4 NET about 6 months ago. He is currently stable on monthly Lanreotide injections. Recently he was...
Last active: Jan 29, 2025
Discussion
NET's Metastasis to Brain
1. Net's found in 2017 - pancreas / small intestine co- primaries 2. Lanreotide until 2023 when progression was identified including bone metastasis. 3. 4...
Last active: Nov 17, 2025
Discussion
Lanrotide & PRRT: Blood sugar and gluten
My 29 son has a grade 3 PNET and Liver METS. He receives monthly Lanrotide which causes wild blood sugar highs and rapid lows. He...
Last active: Jul 25, 2025
Discussion
Biopsy showed DIPNECH
I received the results of a lung biopsy last week & it showed DIPNECH. I see an oncologist next week to discuss treatment options. Pulmonologist...
Last active: Sep 23, 2025
Discussion
Anyone have pancreatic neuroendocrine tumors with carcinoid syndrome?
I'm 87 years old and was recently diagnosed with a well-differentiated grade 1 pancreatic neuro-endocrine tumor, with widespread hypermetabolic disease. My PET scan showed extensive...
Last active: Feb 17 3:55pm
Discussion
Had CLL since 1996 & Now NETs-Anyone Else?
I have had CLL since 1996 and during the years had oral chemo 3 times to regulate white blood count, but for about 8 years...
Last active: Aug 27, 2023