Neuroendocrine Tumors (NETs) Support Group

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Comments (932)

My husband had a carcinoid tumor removed from his intestinal area 20 years ago, then two...

https://connect.mayoclinic.org/comment/1072285/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2024

Thank you for sharing and your wife is in my prayers. I was thinking all my...

https://connect.mayoclinic.org/comment/866477/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2023

I just had my 20th Somatuline depot aka Lanreotide injection last week. I too eat dairy...

https://connect.mayoclinic.org/comment/1122213/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 12, 2024

Hi Ce1b, I have been receiving lanreotide injections for three years. I took a break for...

https://connect.mayoclinic.org/comment/902108/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2023

Hi I was diagnosed a year ago with NET. It showed up with multiple lesions in...

https://connect.mayoclinic.org/comment/854586/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

Just thought I would contact this group to say Hi. I was diagnosed with NETS about...

https://connect.mayoclinic.org/comment/689085/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 13, 2022

Hi @nana120 That's such great news to be stable!!! Sounds like the lanreotide is doing its...

https://connect.mayoclinic.org/comment/937205/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 27, 2023

Hi. I also have NET starting in the lung. It has spread to liver and lymph...

https://connect.mayoclinic.org/comment/835071/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2023

Today I had a visit with my oncologist after the surgery. Original huge tumor of the...

https://connect.mayoclinic.org/comment/823714/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2023

I agree! Over the last 13 years of getting these shots I have had to educate...

https://connect.mayoclinic.org/comment/1308665/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 20, 2025

We can't suggest a treatment, your NET Specialist is source for making the best decision. I...

https://connect.mayoclinic.org/comment/857592/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2023

I have been on Lanreotide for 11 months now, and Octreotide for the previous 13 years....

https://connect.mayoclinic.org/comment/826838/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 16, 2023

You had 2 ft of small intestine removed due to NETs. I'm assuming you also had...

https://connect.mayoclinic.org/comment/1467938/

Discussion: Lanreotide side effects: Anyone having GI issues?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 26, 2025

@nannybb omygosh...it doesn't instill confidence, does it? Problem is, my surgeon is the head of GI...

https://connect.mayoclinic.org/comment/1418065/

Discussion: How can test be so different?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2025

Thank you all so much for your help and support. We are indeed very pleased with...

https://connect.mayoclinic.org/comment/1256916/

Discussion: New and concerned about my wife.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 13, 2025

I have been receiving the Octreotide injections (Sandostatin, and now lanreotide) for 11 years, every 28...

https://connect.mayoclinic.org/comment/1197117/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 25, 2024

Hello @joneshome and welcome to the NETs support group on Mayo Connect. I appreciate you sharing...

https://connect.mayoclinic.org/comment/1118329/

Discussion: Anyone have problems with elevated blood pressure while on Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2024

Thank you so much for the responses! I have been out of pocket and just now...

https://connect.mayoclinic.org/comment/167648/

Discussion: Lesions, Cystic liver mets, vs Tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2017

@patrick031621 - I have similar conditions - surgery to remove huge pancreatic NET, metastastized to liver....

https://connect.mayoclinic.org/comment/856275/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 8, 2023

I was also going to suggest you look into the Ipsen Care program. They are the...

https://connect.mayoclinic.org/comment/1415524/

Discussion: Cost of treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025