Neuroendocrine Tumors (NETs) Support Group

Hiya. My partner is on her fourth monthly lanreotide & just had scans. They showed significant growth in liver despite the treatment ( grade 2,...

For those of you that have already had PRRT, was it done through a PICC line? Was it inserted the day before procedure or day...

I had my 2nd PRRT treatment in October. Third treatment in December was canceled due to low platelet count and scheduled for this Thursday. Had...

I’ve read from some of you and elsewhere that hair thinning occurs for some with PRRT and that it comes back. I’ve also read it...

PRRT Update: Today I got the absolute best news😁 Had my PRRT follow-up appt with the Radiologists. After reviewing both of my surgery path reports...

After 4 PRRT treatments for PNET, grade 2 stage 4, burning, pain and urgency/frequency with leakage & risk of incontinence. No UTI. Doctors in the...

My wife is scheduled to begin PRRT in early March 2023. In spite of a recent consult with radiology, we are still concerned about the...

My partner is grade 2, stage 4 PNET diagnosed Jan 28 2025 and post start of lanreotide (3 months) showed growth still. Starting PRRT shortly....

Do any participants have personal experience or know of someone who were treated with other therapies following unsuccessful Lutathera treatment ?If so, what was used?What...

After my 2nd PRRT treatment I started having out of control erratic BP and Pulse also Heart skipping beats. I can’t touch my head or...

Sorry if this has been discussed before, but I was interested in hearing peoples experience with PRRT (Peptide Receptor Radionuclide Therapy)? I live in Georgia...

My husband has small bowel Neuroendocrine cancer that had metastasized to liver, lymph nodes,and bones he had surgery to remove primary tumor in small bowel,...

My 29 son has a grade 3 PNET and Liver METS. He receives monthly Lanrotide which causes wild blood sugar highs and rapid lows. He...

I am considering surgery for neuroendocrine tumors metastatic to the liver. I have about 6-7 tumors that are visible on MRI. One surgeon told me...

My wife completed her fourth PRRT treatment in late August 2023. (SPEC scans were done in conjunction with PRRT treatments)She is scheduled in early January...

I am currently preparing to begin Lutathera at Mayo in Jacksonville after showing progression while on Clinical trial CAM2029 octreotide. Fully terrorized as what to...

Is there an imaging standard for monitoring treatment efficacy?Was a protocol developed as a result of NETTER clinical trials?E.G.1. modality2. when3. when repeatedI do understand...

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...

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...

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...