Neuroendocrine Tumors (NETs) Support Group

Do any of your providers use quantitative methods to understand post treatment effectiveness e.g. tumor size; tumor burden; etc.? If so, can you share what...

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?

Anyone have advice on coping with the uncertainty after the last PRRT for the months before a scan to assess its effectiveness? (Stage 4, grade...

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...

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...

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,...

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

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...

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....

I will have my third PRRT treatment next week. All well so far. Had a cramping pain in the left side like a "Charlie Horse"...

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)....

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...

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...

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

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