Neuroendocrine Tumors (NETs) Support Group

Hi everyone, I’m hoping to get some perspectives from others who have faced similar decisions around PRRT. I’m a 40-year-old male with a well-differentiated Grade...

I would like to know who are using these processes and how they are working. I have a carcinoid tumor in my mesentery inoperableand i...

Is there anyone out there that is considering or has been accepted to the COMPOSE PRRT Edotreotide Trial study?

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 had my first PRRT treatment in mid Jan and got my CgA blood work back today which shows an increase in my numbers. I...

After going through many years of misery & countless investigative scans, I was finally diagnosed with Stage 4 pNETs on 4 July 2023: I had...

My husband completed 4 Lutathera treatments and had his first PET/CT with intravenous contrast (Dototate). He has source NET in pancreas metastasized to liver. Diagnosis...

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

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...

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....

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...

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...