Neuroendocrine Tumors (NETs) Support Group

Hi folks - I know that PRRT and vitamins have a complex relationship. Has anyone been advised not to take any vitamin c? What if...

I was dx with small bowel NET, met to the liver in 2018 (Carcinoid subset). Surgery removed the large primary tumor & some lymph nodes....

Diagnosed in August 2025. Started Lanreotide injections in October. Pet Scan revealed a "Christmas tree". Tumors covering pancreas and liver. Non-functional and no further symptoms....

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...

I am currently on octreotide every 28 days and I am currently stable after PRRT treatmentsMy NET has metastasized to my bones I have been...

My partner (grade 2, stage 4 PNET) has an unrelated tooth implant to do & that involves mixing bone & blood to build up the...

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...

@tresjur @gaylejean @gulzar @joannem @joanney @amyh2439 @lucci50 @derekd @lorettanebraska. Hi carcinoid folks. How is everyone doing? I would like to discuss treatments for carcinoids. Surgery...

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...

Kim is about to complete her 2nd of 4 scheduled PRRT treatments, with scheduled PET scan and CAT scan to review progress before treatment #3....

Just a up date on my journey of net been on my shots octretide for two yrs. had four treatment of prrt, not going very...

had a tumor removed from small intestine 5/2022.that metastasis to the liver started octretide shots every 28 days,shots did not work very well with the...

My wife has been battling NET bone involvement since 2018 (co- primary sites pancreas and SB found in 2014).Treatments including PRRT (4X) sessions while stabilizing...

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...

Hello, I was diagnosed with liver mets from ileocecal primary. I am scheduled for primary site removal next month, but the liver is still undecided....

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,...

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...

Today, during our meeting with our NET cancer team, we were reviewing the results from CT, MRI, and PET scan, and in general we are...

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...

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...