Neuroendocrine Tumors (NETs) Support Group

I am looking for anyone that has dealt with this diagnosis and received treatment. My husband was diagnosed July 2018 and we’ve had two reoccurrence...

20 months after NET found in small intestine and already spread to liver. I have had resection, monthly octreotide injections, and Lutathera. The cancer seemed...

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...

Hiya. My partner is on her fourth monthly lanreotide & just had scans. They showed significant growth in liver despite the treatment ( grade 2,...

I have primary NET in the small intestine, spread to stomach wall and liver. I just got my 3rd monthly Somatuline (Lanreotide) injection 4/12. About...

Hello I was diagonised with Neuron drone Tumor Cancer April 2024 from having a bowl obstruction surgery which was the tumor in the intestines that...

After 8 months on lanreotide I am getting the diet down and no longer losing weight, but my hair loss is beginning to be noticeable....

Hi. I am diagnosed with NET Ki 80% potentially pancreas head and metastas liver. Looking for similar patients and willing to pay specialized doctors in...

I have had non-alcoholic cirrhosis of the liver for 7 years. I’m doing really good but after a lung biopsy last week, I have also...

Hi! I had pancreatic NET surgery on Feb.1. Recovering nicely at home. Never had flushing before surgery. Now I experience flushing almost every day. Should...

Interested in others experience to understand imaging. Radiologist reports "Hepatic metastases have mildly increased in size from prior CT Dec 2024 and MRI November 2024."...

Hello All, I'm new to the NET world and feeling very lost (uninformed). Mine was found in my appendix in the pathology report by chance...

Diagnosed with high grade(3) neuroendocrine carcinoma. Irgun duodenum. Mets pancreas and many in liver. Did 4 cycles of carboplatin and etopiside chemo in hope to...

Pnets KI67 25%. My husband had 3 captems cycles. The last cycle had toxicity and became sick. Anyone experience Y90 procedure for Pnets mets to...

Starting Everolimus later this week due to progression after 3 months of Lanreotide. Planning to stay on Lanreotide while on Everolimus. What are your experiences...

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...

PNET Grade 2 (K-67 3.2%) in tail of pancreas, both portal and splenic veins. No mets to liver or spleen. Just finished 3rd round of...

I am interested in hearing people’s experiences with cabozantinib. I was diagnosed January 2020, grade 3, well-differentiated, unknown primary with tumors in liver, pancreas, lungs,...

I had stage 4 neuroendocrine cancer 3 years ago. They removed 55 % of my liver to remove 3 tumors and 17 inches of my...

Hello. My wife (53) was diagnosed with stage IV neuroendocrine rectal cancer last November. It had spread to her liver. She did 6 treatments with...