Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

1,009 total results

Comments (931)

@jameshoch My husband was first diagnosed with a carcinoid tumor in 1995. They removed the tumor...

https://connect.mayoclinic.org/comment/1477405/

Discussion: What does the future look like for a stage 4 NET patient?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 8 11:21am

My husband was diagnosed with carcinoid in 1995. He had one tumor removed between the Illium...

https://connect.mayoclinic.org/comment/1376925/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2025

I appreciate you sharing your experience with lantreotid shots, @dbmenger. You said that you have "...no...

https://connect.mayoclinic.org/comment/1348041/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2025

Yes, they remove the gallbladder because if you get on Lanreotidd treatment ( as I am)...

https://connect.mayoclinic.org/comment/1249277/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2025

Here’s a brief summary prior to starting treatment with Dr Wolin. 59 year old male presents...

https://connect.mayoclinic.org/comment/1238487/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2025

I have not heard where PRRTwas your first course of treatment, then CAP/TEM. Of course we...

https://connect.mayoclinic.org/comment/1190917/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2024

Dougt - There is a good website you might checked out www.netrf.org (Neuroendocrine Tumor Research Foundation)...

https://connect.mayoclinic.org/comment/1143245/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2024

My husband has NETS stage 4 with tumors throughout his skull and body. One tumor was...

https://connect.mayoclinic.org/comment/1396598/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 19, 2025

We've posted the story before just to reiterate: My husband has stage 4 NETS with tumors...

https://connect.mayoclinic.org/comment/1393120/

Discussion: Has anyone had NET show up on CT scan, I had CT scan in 23

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2025

My partner diagnosed with CRC 6 mths ago. Had surgery but METs to multiple bone lesions....

https://connect.mayoclinic.org/comment/1386977/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 4, 2025

Splendrous, I've been on Octrotide injections monthly since April 2018, a month after my first surgery...

https://connect.mayoclinic.org/comment/1208675/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2025

Sophiarose, the radiologist and doctors want most of the Octreotide or Lanriotide out of your system...

https://connect.mayoclinic.org/comment/1169494/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2024

Thank you, @Roseflame!Thank you for the advice! I will start biotin! I also have elevated blood...

https://connect.mayoclinic.org/comment/1126586/

Discussion: Facial and lip sores from lanreotide injections for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 19, 2024

My husband was switched from Octreotide to Lanreoride 4 mos. ago & he said he has...

https://connect.mayoclinic.org/comment/1060449/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2024

Yes, unfortunately our facility couldn’t get me in until July 19th. I then get my lenreotide...

https://connect.mayoclinic.org/comment/881999/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 20, 2023

So glad to find this! Had NET surgery small intestine and mesentery in 2015 after diagnosis...

https://connect.mayoclinic.org/comment/827137/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 16, 2023

Hola, han pasado 7 semanas de la última aplicación de lutecio y las crisis carcinoides si...

https://connect.mayoclinic.org/comment/616929/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2021

My husband has Stage 4 Nets with tumors throughout his skull and body. He had 1...

https://connect.mayoclinic.org/comment/1407468/

Discussion: 2nd 3 month follow up

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2025

My husband has been having Lanriotide injections every 28 days for 2 1/2 years. He is...

https://connect.mayoclinic.org/comment/1355375/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2025

I had two lantreotide shots. They controlled my hot flashes and made me feel human but...

https://connect.mayoclinic.org/comment/1347584/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 13, 2025

Follow

10095

1 hour ago

Follow

8222

3 hours ago

Digestive Health

Follow

18383

3 hours ago

Follow

1178

4 hours ago

Melanoma & Skin Cancer

Follow

1085

4 hours ago