Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

I take octreotide injections and get inappropriate huge blood sugar spikes anytime I eat anything other...

https://connect.mayoclinic.org/comment/1356060/

Discussion: Lanrotide & PRRT: Blood sugar and gluten

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2025

@myboys02 Sorry to hear about your diagnosis, but so glad you have a diagnosis because DIPNECH...

https://connect.mayoclinic.org/comment/1554737/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 19 6:30pm

How did your embolization go? I have grade 2 metastatic to the liver with no known...

https://connect.mayoclinic.org/comment/1364518/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2025

I am having the once per month injection of Octreotide (sp?). The drug has calmed my...

https://connect.mayoclinic.org/comment/1349207/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2025

Thx for sharing. Did they say if her tumor was functioning or non functioning from the...

https://connect.mayoclinic.org/comment/1163510/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 27, 2024

No on bland embolization, did not try lanretide, been on octreotide for 1 yr. had 4...

https://connect.mayoclinic.org/comment/1037570/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2024

I wish to join a group with NET Pancreas with multiple Secondaries in Liver, and on...

https://connect.mayoclinic.org/comment/1294836/

Discussion: I’m living with Pancreatic Neuroendocrine Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2025

Hi Cassandra my husband is in the same way you are, very sad, he has a...

https://connect.mayoclinic.org/comment/1394114/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

@peggymariejackson @hopeful33250 @sherikayb @debbieguk @ce1b I see some of you have lung NETs, some GI NETs,...

https://connect.mayoclinic.org/comment/861008/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Im so sorry youre going through all this.🙏🏼 He has not. The surgeon did tell us...

https://connect.mayoclinic.org/comment/1347070/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 13, 2025

Yes, every 28 days. I cannot even feel the injection. It was only after I had...

https://connect.mayoclinic.org/comment/134517/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2017

I have had a 111IN-Octreotide in 2013, and in 2014 a F-18 FDG PET/CT of the...

https://connect.mayoclinic.org/comment/186246/

Discussion: Multiple abnormal hormone levels - Could it be autoimmune related?

Support Group: Autoimmune Diseases

Posted: Feb 26, 2018

@jhhaas I’m curious. You listed a lot of symptoms but said you haven’t needed treatment shots...

https://connect.mayoclinic.org/comment/1205397/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2025

This is my 6 years trying to get information for having Neuroendocrine Cancer, lung Nets! I...

https://connect.mayoclinic.org/comment/1203278/

Discussion: What does my dentist need to know about my NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2025

I have GERD too. Before my DIPNECH and lung NETs was diagnosed even though we knew...

https://connect.mayoclinic.org/comment/1329913/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

I'm not familiar with the term, "centriest" @panorman3. Perhaps the term is "mesentery"? The mesentery is...

https://connect.mayoclinic.org/comment/1257878/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2025

I'm currently taking Lanreotide. I have taken Octreotide as well. It is so hard to separate...

https://connect.mayoclinic.org/comment/1391715/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2025

@nannybb I on Medicare they would only approve the long term my RX insurance wouldn’t approve...

https://connect.mayoclinic.org/comment/1540439/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1 12:33pm

@mieczyslaw If you have a lot of tumorlets in both lungs it sounds suspect for DIPNECH....

https://connect.mayoclinic.org/comment/962492/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2023

I also responded to you on another thread about fatigue, hair thinning, blood sugar spikes and...

https://connect.mayoclinic.org/comment/1174579/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2024

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