Neuroendocrine Tumors (NETs) Support Group

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Comments (736)

I have had PRRT radiation, what type of radiation are you having?

https://connect.mayoclinic.org/comment/1456684/

Discussion: Anyone had radiation for carcoinoid in Mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 9, 2025

@dbamos1945 Next session in two days (PRRT) - third session. I will not have scans until...

https://connect.mayoclinic.org/comment/1588444/

Discussion: Has anyone had cramping pain in left side nearing 3rd PRRT treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 1 1:20pm

Have any of you done PRRT treatments? They are going to discuss this with my sister.

https://connect.mayoclinic.org/comment/1038641/

Discussion: Anyone have experience with "functioning" Pancreatic NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 23, 2024

Thank you for the clarification. He mentioned PRRT and the monthly injections in the same sentence...

https://connect.mayoclinic.org/comment/797273/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15, 2023

So glad to hear that you had your 3rd PRRT treatment, @klpetts. I'm sure you are...

https://connect.mayoclinic.org/comment/257038/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 28, 2020

How long should I expect the side effects of nausea and fatigue to last after PRRT...

https://connect.mayoclinic.org/comment/1457990/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 10, 2025

Hi I w thanks kurtas wondering if there is very much pain from the PRRT? Thanks...

https://connect.mayoclinic.org/comment/1406009/

Discussion: PRRT Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2025

It was determined that I had a hernia the size of a golf ball. And it...

https://connect.mayoclinic.org/comment/713908/

Discussion: Any NET patients from NYC

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 3, 2022

PRRT came first because I was in a trial. I'm lucky the CAPTEM is working. Thank...

https://connect.mayoclinic.org/comment/1190952/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2024

Hello Just had my second PRRT session. NETS started in my liver and despite surgery removing...

https://connect.mayoclinic.org/comment/1528670/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17 1:10am

What is better about the PRRT then CAPTEM? I have been on CAPTEM for 7 months....

https://connect.mayoclinic.org/comment/839275/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 7, 2023

After prrt what do you do with your pillows and blankets due to the radiation??? Thanks...

https://connect.mayoclinic.org/comment/1525649/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12 10:57pm

How do you feel after the PRRT was in painful how long did it take to...

https://connect.mayoclinic.org/comment/1425506/

Discussion: PRRT Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2025

I don’t know if it’s associated but after PRRT started I’ve been diagnosed with rheumatoid arthritis

https://connect.mayoclinic.org/comment/729033/

Discussion: PRRT for NETs: Questioning whether I should continue or not

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 21, 2022

@djchambers I had both folfox and PRRT. Pretty good response to both but PRRT is much...

https://connect.mayoclinic.org/comment/1510426/

Discussion: NETs growing despite 3 months of capecitabine and temozolomide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20 11:21am

Thank you to everyone who responded to our request for side effects of PRRT - all...

https://connect.mayoclinic.org/comment/1597190/

Discussion: PRRT Treatment: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 6 days ago

sandy23 search on 'PRRT' here in Connect; there are several posts about patients experiences with PRRT...

https://connect.mayoclinic.org/comment/860181/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 15, 2023

If they offer PRRT (Peptide Receptor Radionuclide Therapy)with Lutetium-177 I would say take it. I did...

https://connect.mayoclinic.org/comment/1373428/

Discussion: Has anyone started taking radiation therapy? Yet my doctor have plan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 18, 2025

Getting ready for my first PRRT treatment in August for stage IV primary gastric tumor with...

https://connect.mayoclinic.org/comment/1358080/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2025

Hi @harley4650 Deciding on PRRT, or any type of chemotherapy, is a big decision. Getting more...

https://connect.mayoclinic.org/comment/753432/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2022

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