Neuroendocrine Tumors (NETs) Support Group

My liver enzymes are very elevated Not sure if it is from my Bland Embolization I had done in January Or from my 9 rounds...

Hi, My mom has recently been diagnosed with NET Grade 1 and the doctor has suggested her Octreotide 30mg. She has taken a couple of...

My husband has taken the Octreotide injection now for about 2.5 years. This past summer he started breaking into a rash/hives on the face &...

Following completion of PRRT treatment, my wife has been receiving monthly octreotide (Sandostatin LAR) injections.She will be out - of -town when the next injection...

Anyone have the above side effects? I was reading that the shot could effect your liver enzymes? I have non-functioning (no symptoms) metastatic tumors in...

Started Octreotide shot in Dec. Labs show Bilirubin going from .7 to 1.1 to 1.5 in three months, iron is 25 and % saturation is...

Maybe my story helps somebody. I've had well differentiated Nets for a while now. A review early last year of a 2019 CT confirmed mesenteric...

I was diagnosed with metastatic neuroendocrine cancer in the liver 4cm x 3.1 cm in Sept. Grade 2, non-functioning, well differentiated KCI 6-8%. My MRI...

Hi! Hope all are well! I am moving to Winston Salem NC and need to find a NET team to continue my 28day octreotide injections...

Hi everyone. After a very long month, I finally saw a surgeon for my 8mm si NETS. I am symptomatic. I was totally expecting to...

What is my life expectancy as a result of my NET? Diagnosed 3 years ago with Grade 1, Stage 4 NETs. Primary tumor is probably...

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

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...

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

If anyone has used the short acting Ocreotide for there treatment can you please share with me how it is dosed How is the injection...

Besides specialized nuclear testing scans, do any elevated blood tests indicate a possible NET tumor besides the 24 hour urine test with creatine? Is it...

I have been doing injection for a year now but as of a few months ago after the injection I am feeling very sluggish, and...

My sister has Grade 3 pancreatic neuroendocrine tumor with liver nodules. She was initially treated with CapTem, but it didn’t work, so the doctor switched...

Does anyone know how much CGA results can vary from lab to lab. Following are the last four CGA results for my wife: 75 (11/16...

My mom is 81 and she was just diagnosed with pancreatic cancer stage IV that has metastasized to her liver. Her oncologist has suggested that...