Neuroendocrine Tumors (NETs) Support Group

Was diagnosed with NET last year, have been getting Lanreotide injections every 28 days plus Everolimus medication everyday Dr stopped Everolimus in September because i...

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...

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...

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 have received Samotuline Depot injections every 28 days for a year. I have avoided Serotonin in my diet, but do I also need to...

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

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...

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 have had CLL since 1996 and during the years had oral chemo 3 times to regulate white blood count, but for about 8 years...

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...

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

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...

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...

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...

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...

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...

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 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 precious wife of 39 years has grade 3 NET in her liver and pancreas (also in the ileum that was removed). She is receiving...