Neuroendocrine Tumors (NETs) Support Group

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@ds231, you're right. Fenbendazole is formulated for veterinary use and can cause irreparable liver damage. -...

https://connect.mayoclinic.org/comment/1290388/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2025

I’m living with net as well, pancreas which has metastasized to my liver. Discovered about 5years...

https://connect.mayoclinic.org/comment/1252221/

Discussion: Is there a particular diet to have when starting Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2025

I was diagnosed 2 years ago, with stage 4 ,started in my lower intestines and metastasized...

https://connect.mayoclinic.org/comment/1202170/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 2, 2025

Hello Karen (@immmm) - Welcome to Mayo Connect, thank you for being an advocate for your...

https://connect.mayoclinic.org/comment/167642/

Discussion: Lesions, Cystic liver mets, vs Tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2017

I have a primary pancreatic net with metastasis to the liver functioning gastrinomas. I was first...

https://connect.mayoclinic.org/comment/1035496/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2024

@fraaseo I live in Far North Qld Australia. I found out in 2021 I had net...

https://connect.mayoclinic.org/comment/1402161/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 26, 2025

I took lanreotide injections for a year and the side effects for me were worse than...

https://connect.mayoclinic.org/comment/933243/

Discussion: Anyone still have pancreas pain while taking Lanteotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2023

Great Info. I am so sorry to hear of your reoccurrences and now mets to the...

https://connect.mayoclinic.org/comment/896402/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2023

I was diagnosed in 2012 as a typical mid-gut, Ileum primary, liver mets and lymphnode mets...

https://connect.mayoclinic.org/comment/869112/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 30, 2023

@helloitsme It is nice to see so many comments to you! Congrats for choosing Mayo Phoenix...

https://connect.mayoclinic.org/comment/851553/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

Kim has had a rocky first week after surgery on March 1st. Went home from hospital...

https://connect.mayoclinic.org/comment/824732/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2023

Hello @bluedane and welcome to the NETs discussion on Mayo Clinic Connect. I am so glad...

https://connect.mayoclinic.org/comment/814509/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2023

My sister was diagnosed with a well differentiated Pancreatic Neuroendocrine tumor Grade 3 Stage 4. It...

https://connect.mayoclinic.org/comment/1105243/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2024

Keep us posted! After my first 2 surgeries to remove/ablate a total of 11 insulinomas, the...

https://connect.mayoclinic.org/comment/896644/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

I grew up in Oklahoma my Dad died of congestive heart failure my step mom died...

https://connect.mayoclinic.org/comment/845761/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 19, 2023

@ricki8: thank you so much for the patient’s perspective of Histotripsy. I have noted your responses...

https://connect.mayoclinic.org/comment/1410784/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2025

That is fantastic! I believe they said 15% isn't functioning. Not sure about the burden. What...

https://connect.mayoclinic.org/comment/1335556/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2025

The doctors didn't say anything about veins, but since that part of the pancreas shares blood...

https://connect.mayoclinic.org/comment/1321687/

Discussion: PNET in Tail of Pancreas, Portal and Splenic Veins

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 6, 2025

I had the same situation as you do. Net tumor went from my small intestine to...

https://connect.mayoclinic.org/comment/1434068/

Discussion: New NET in liver and small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2025

Yes it is. My three large tumors on my pancreas are about half the size in...

https://connect.mayoclinic.org/comment/836328/

Discussion: Anyone dealing with Carcinoid NETs with Diabetes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2023

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