Neuroendocrine Tumors (NETs) Support Group

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Comments (932)

Hi @nana120 I believe your hair loss will stabilize. My hair has really thinned due to...

https://connect.mayoclinic.org/comment/1008942/

Discussion: Anyone have hair loss with lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3, 2024

My primary was a tumor wrapped around my small intestine, discovered in 2007. I have been...

https://connect.mayoclinic.org/comment/898391/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

@dadcue I'm not a doctor, so my opinion is just that an unqualified/unskilled opinion. For me...

https://connect.mayoclinic.org/comment/1543997/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6 10:34am

I have been on this journey for a short time, so I am not qualified to...

https://connect.mayoclinic.org/comment/933961/

Discussion: Carcinoid syndrome; NET not found

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 21, 2023

I’d like support last round suggestions, as my wife also had too many tumors to count...

https://connect.mayoclinic.org/comment/874754/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 8, 2023

Hi Teresa, I had been having MRI scans every 4-6 months after removal of the primary...

https://connect.mayoclinic.org/comment/801786/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2023

Thank you so much for the response. You have no idea how nice it is to...

https://connect.mayoclinic.org/comment/1283166/

Discussion: New To NETS - Stage 4 / Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 16, 2025

My blood sugar at one point kept going up and down but changing my diet and...

https://connect.mayoclinic.org/comment/1261777/

Discussion: Liver function (birirubin, globulin, glucose, iron) and Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19, 2025

@arleighna - it gets better with time! My first 6 mo I was in bed for...

https://connect.mayoclinic.org/comment/1208482/

Discussion: I have 3 neuroendocrine tumors in left lung: Can I handle radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2025

Hi, my husband was diagnosed last year with grade 1, stage 4 neuroendocrine tumor. We found...

https://connect.mayoclinic.org/comment/1295489/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2025

Hello @susan481 and welcome to Mayo Connect. I'm sure your partner appreciates you reaching out for...

https://connect.mayoclinic.org/comment/1293995/

Discussion: Lanreotide side effects: diarrhea constipation, what to do?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2025

I had explosive diarrhea also not a fun thing to deal with! I get the lanreotide...

https://connect.mayoclinic.org/comment/1287554/

Discussion: Gastrinomas and Whipple procedure

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2025

Husband was diagnosed in Nov. of last year with low grade neuroendocrine carcinoma which started at...

https://connect.mayoclinic.org/comment/941333/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2023

I think I’m right but maybe not I am in Panama I also have NETS and...

https://connect.mayoclinic.org/comment/1449620/

Discussion: Anyone had positive results from Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2025

My husband is also a patient at Mayo Phoenix. Have they discussed captem with you? Everolimus...

https://connect.mayoclinic.org/comment/1122814/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2024

Hello @jennywren8 and welcome to the NETs support group on Mayo Connect. I appreciate your response...

https://connect.mayoclinic.org/comment/1010237/

Discussion: GI NET attached to pancreas supposedly non-producing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5, 2024

She has a well-differentiated grade 3 PNET that metastases to the liver. There were quite a...

https://connect.mayoclinic.org/comment/934866/

Discussion: Carcinoid syndrome; NET not found

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 23, 2023

I had surgery on Feb.1. Distal pancreatectomy, removal of part of the stomach, gallbladder and spleen.,...

https://connect.mayoclinic.org/comment/822921/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 8, 2023

Hello All I too have Neuroendocrine carcinoma that started in my small intestine and metastatic to...

https://connect.mayoclinic.org/comment/797748/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2023

In 2021 I went to the emergency room with severe stomach pain. Thank-God the emergency room...

https://connect.mayoclinic.org/comment/1427968/

Discussion: NETs with Liver metastasis: starting lanreotide injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2025

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