Neuroendocrine Tumors (NETs) Support Group

@rkklinger We have a number of members who have had good success with PRRT. Here is...

https://connect.mayoclinic.org/comment/1568531/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 6 8:53pm

As with other comments made, I agree with all; although 1 commenter shared his/her less positively...

https://connect.mayoclinic.org/comment/1588392/

Discussion: PRRT Treatment: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 1 12:09pm

@mmar2025 I went to a clinical trial interview for Alpha PRRT last week. Unfortunately I was...

https://connect.mayoclinic.org/comment/1585117/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28 8:11am

http://prrtinfo.org/prrt Peptide Receptor Radionuclide Therapy (PRRT) about PRRT one of the best known treatment for neuroendocrine...

https://connect.mayoclinic.org/comment/90147/

Discussion: I have recently been diagnosed with my third neuroendocrine tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1, 2016

Followers of this discussion may also be interested in these related discussions: - High or Fluctuating...

https://connect.mayoclinic.org/comment/1050522/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 14, 2024

@kwan Here is a link I found under the PRRT discussion group. It's very informative! If...

https://connect.mayoclinic.org/comment/861029/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Hello @sbds and welcome to the NETs support group on Mayo Connect. It is good to...

https://connect.mayoclinic.org/comment/1095873/

Discussion: PRRT treatment how does it work?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 28, 2024

I had prrt nearly 3 years ago. It shrunk my tumours in total by about 20%...

https://connect.mayoclinic.org/comment/1587535/

Discussion: PRRT Treatment: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 31 11:24am

@dbamos1945 I received my Ocreotide shots the same day as the PRRT treatments..

https://connect.mayoclinic.org/comment/1591068/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5 7:25am

I'm sorry that things changed. I have read about side effects of Cabometyx. I am reading...

https://connect.mayoclinic.org/comment/1584450/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27 9:37am

This was my treatment calendar while going through PRRT Treatments, All the tests were compared to...

https://connect.mayoclinic.org/comment/1469072/

Discussion: What is the Imaging Protocol Following Completion of PRRT Therapy?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2025

Is this the lutetium 177 (Lutathera) PRRT? Had this in 2024 and agree with the others...

https://connect.mayoclinic.org/comment/1568569/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 6 10:33pm

@kwan, I moved your question about PRRT to this existing discussion: - Interested in hearing people's...

https://connect.mayoclinic.org/comment/867742/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2023

Comments above are very informative and constructive - After my wife completed 4 PRRT sessions in...

https://connect.mayoclinic.org/comment/1587653/

Discussion: PRRT Treatment: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 31 1:07pm

Welcome @littlecrown1966. You're not alone in having a long road to diagnosis with misdiagnosis along the...

https://connect.mayoclinic.org/comment/755494/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 30, 2022

@kaiulani: after the Lutathera PRRT session are you getting the Lanreotide shot within a couple days?...

https://connect.mayoclinic.org/comment/1590751/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 4 3:47pm

@firepowr, sorry to hear that the CT scan revealing more growth in the liver. Glad that...

https://connect.mayoclinic.org/comment/775388/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2022

Teresa: There is a newer version of the original Beta PRRT in advanced clinical trials now....

https://connect.mayoclinic.org/comment/1219077/

Discussion: MRI or CatScan as follow up imaging for metastatic liver tumor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2025

Hello were you prescribed other treatments after PRRT? My husband will be doing PRRT soon but...

https://connect.mayoclinic.org/comment/1383995/

Discussion: Questions for surgeon-considerations choosing PRRT or surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 1, 2025

@tgsenn70 I'm sure you are looking forward to your husband getting this treatment. We have several...

https://connect.mayoclinic.org/comment/1415557/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025