Neuroendocrine Tumors (NETs) Support Group

My wife is currently undergoing PRRT (2nd treatment starts May3). Because of severe pan in both knees (primary osteoarthritis), which is a major impact to...

I’m questioning if I should continue PRRT for NETs on my liver. I feel much worse after starting PRRT

I am grade 2 metastatic to the liver of unknown origin. diagnosed in Oct 2024. Dr suspects it originated in the GI Track. Octreotide has...

My wife completed her 4th PRRT treatment in late August 2023.We are aware of the impact of the treatment relative to CBC (Hemogram) test results,...

My husband has just completed his second PRRT treatment 2 days ago. As with the first one, he is very tired but otherwise doing well....

PRRT was approved by the FDA on Friday, January 27, 2018 for use in the U.S. AAA is the manufacturer (who was purchased by Novartis)....

Has anyone taken part in a trial study using PRRT with the alpha emitter. If so which study and what were the results.

It’s been a long path, years of flushing, stomach cramps and diarrhea that came and went with no warning or explanation. Had a resection of...

I am currently enrolled in the this trial through LCMC and wanted to connect with anyone who may also be doing this trail to discuss...

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...

Wanted to ask the high-grade 2 and 3 neuroendocrine folks if PRRT has worked well for them.

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

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

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...

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

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...

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...

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,...

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...

@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...