Neuroendocrine Tumors (NETs) Support Group

1. Net's found in 2017 - pancreas / small intestine co- primaries 2. Lanreotide until 2023 when progression was identified including bone metastasis. 3. 4...

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...

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...

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...

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...

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...

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...

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...

I received the results of a lung biopsy last week & it showed DIPNECH. I see an oncologist next week to discuss treatment options. Pulmonologist...

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...

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...

In reference to my wife: Recent C/T of abdomen and pelvis showed "increased hypervascularity in the haptic metastasis in the caudate". Initial discovery Background: NET...

I was told yesterday that my NET has spread to my spine L1 and my periportal lymph node I did Lanreotide and Ocreotide injections for...

Hi, I was dx with pancreatic nets in 2010, had a resection in my pancreas. There were some nodules left. I had octreotide for carcinoid...

Hello everyone. I am new to this site and this is my first post. I had a routine colonoscopy in March and found that I...

I was diagnosed in ‘21 (51 y/o) with SB net and metastatic tumor in the mesentery lymph nodes. All successfully resected. The metastasis in mesentery...

My wife has well differentiated, grade 2 stage 4 NET to the terminal illeum (which was removed) w mets to the liver and pancreas -...

My wife has well differentiated, grade 2 stage 4 NET to the terminal illeum (which was removed) w/ mets to the liver and pancreas which...

Hello. I’m thinking this may have been discussed before. Sorry if I’m asking an old question Is everyone with a pNET on Creon. Pancreatic enzymes...

Started Everolimus for pancreatic Neuroendocrine cancer with Mets to liver and bone diagnosed four years ago. Was 49 when diagnosed. Had TACEx4, IV radiation(PRRT) x4,...