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Neuroendocrine Tumors (NETs) Support Group

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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 12:45pm
Discussion
Anyone had a significant difference between a CT and MRI reading?
My precious wife of 39 years has grade 3 NET in her liver and pancreas (also in the ileum that was removed). She is receiving...
Last active: 4 days ago
Discussion
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
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 2:02pm
Discussion
How can test be so different?
Hi, I hope all are feeling well. For the past yr I have been undergoing many tests. 24 hr Urine positive in small bowel, Gallium...
Last active: Oct 19 10:16am
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 1:50pm
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 11:03am
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 10:46am
Discussion
New approved drug for pNETs
Good morning! Yesterday I had a meeting with my oncologist to discuss the data from my last CT scan. I have been moved from scans...
Last active: Jul 25 11:54am