Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

756 total results

Comments (689)

Hello @amk1122 and welcome to the NETs support group on Mayo Connect. I am sorry to...

https://connect.mayoclinic.org/comment/949381/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 17, 2023

I had initial PRRT in 2021 with excellent results and some hair loss (also early on)....

https://connect.mayoclinic.org/comment/1544877/

Discussion: PRRT for stage 4 pNET with mets to liver, small intestine & skull

Support Group: Neuroendocrine Tumors (NETs)

Posted: 18 hours ago

PRRT might contribute to vein damage. Waiting for PET scan now, and its been harder for...

https://connect.mayoclinic.org/comment/1421700/

Discussion: PRRT Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2025

Did you do bland embolization? Did you try Lanreotide? I heard that there is a clinical...

https://connect.mayoclinic.org/comment/1037516/

Discussion: Treatment for GI NET with liver mets not working: Options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2024

@ricki8: Thank you for your reply. I listened to the podcast again and found it reassuring...

https://connect.mayoclinic.org/comment/1410132/

Discussion: So, now just still waiting, losing my mind being worried and new quest

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2025

what is the difference between Lanreotide and prrt?

https://connect.mayoclinic.org/comment/1257523/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2025

@tfoucaul Sounds like you might have some experience with PRRT? If so, can you please share?...

https://connect.mayoclinic.org/comment/1498305/

Discussion: Stable metastatic NET – should I be pushing harder for PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4 7:35pm

I am not a doctor ...... Have you had a PET scan? Depending on results your...

https://connect.mayoclinic.org/comment/1498067/

Discussion: NETs growing despite 3 months of capecitabine and temozolomide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4 1:18pm

@zacharycat thanks. My tumors are not likely responsive to PRRT. They said most people only stay...

https://connect.mayoclinic.org/comment/1510557/

Discussion: NETs growing despite 3 months of capecitabine and temozolomide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20 2:19pm

Hello @susan481, I see that you are looking for others to share about hair thinning as...

https://connect.mayoclinic.org/comment/1388603/

Discussion: PRRT and hair loss

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 7, 2025

Grange - sorry to hear about your wife’s side effects. I did my 4 rounds of...

https://connect.mayoclinic.org/comment/1514246/

Discussion: Does anyone have persistent nausea and fatigue post Lutathera?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25 9:24am

PRRT ( peptide receptor radionuclide therapy) is a radiation treatment.. I was on Ocreotide injections for...

https://connect.mayoclinic.org/comment/1258508/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2025

Did your husband have PRRT treatment?

https://connect.mayoclinic.org/comment/1048916/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 11, 2024

Hello @sbds and welcome to the NETs support group on Mayo Connect. I see from your...

https://connect.mayoclinic.org/comment/1003738/

Discussion: NET in illeum, surgery or proper nutrition?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2024

Hello @badi and welcome to Mayo Clinic Connect. It sounds as if your husband's journey with...

https://connect.mayoclinic.org/comment/821930/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 6, 2023

@klpetts , Hi I read your posting of April 2020 that you were heading off to...

https://connect.mayoclinic.org/comment/871565/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 3, 2023

@tjstaufr How are you handling the PRRT so far?

https://connect.mayoclinic.org/comment/1429721/

Discussion: New NET in liver and small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2025

Take the shots first. PRRT is in the options. Don’t go there first

https://connect.mayoclinic.org/comment/1396269/

Discussion: My carcinoid tumor is inoperable: What are the best ways to control?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2025

Is it inherited like MEN-1, are you candidate for PRRT treatment.

https://connect.mayoclinic.org/comment/102024/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2016

@markmark007 As your wife has completed the PRRT treatment, do you mind to let us know...

https://connect.mayoclinic.org/comment/968308/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2023

Follow

1104

21 minutes ago

Digestive Health

Follow

18201

4 hours ago

Follow

8128

5 hours ago

Melanoma & Skin Cancer

Follow

1034

7 hours ago

Visiting Mayo Clinic

Follow

6716

8 hours ago