Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

So sorry to reply in septembre i ve been very busy with my husband and i...

https://connect.mayoclinic.org/comment/1394123/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

@jukebox42 Sorry you feel stressed. Is this a new diagnosis for you? I posted about octreotide...

https://connect.mayoclinic.org/comment/1254968/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

I also have 2 carcinoids in my left lung and multiple, small other nodules. My tumor...

https://connect.mayoclinic.org/comment/844958/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

@nannybb Since I’ve been taking octreotide injections for 5 years now, I’m a little fuzzy on...

https://connect.mayoclinic.org/comment/1540763/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1 11:06pm

@markmark007 I take octreotide injections for lung NETS and DIPNECH. My 50+ lung tumors are very...

https://connect.mayoclinic.org/comment/966952/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 18, 2023

I am receiving octreotide injections monthly. They are trying to diagnose the cause of the nausea,...

https://connect.mayoclinic.org/comment/705227/

Discussion: Any NET patients from NYC

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2022

That is wonderful news I get my second Followup scans on July 3 What are you...

https://connect.mayoclinic.org/comment/1338931/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 1, 2025

Just off a virtual call with the doctors. They are putting me on a regimen of...

https://connect.mayoclinic.org/comment/805822/

Discussion: Newly diagnosed - neuroendocrine tumor in intestines

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3, 2023

Yes. Octreotide is known to increase blood sugar. Many have to go on metformin to control...

https://connect.mayoclinic.org/comment/1261727/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19, 2025

I have had 5 octreotide injections so far and have been loosing weight ( which I...

https://connect.mayoclinic.org/comment/919026/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2023

Thanks for your reply. Have you been getting MRI's for the past 1 1/2 years to...

https://connect.mayoclinic.org/comment/1165494/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2024

For all of you who are currently taking Octreotide for carcinoid syndrome, by injection, there is...

https://connect.mayoclinic.org/comment/726705/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2022

Thanks for your post! I thought I might be the only one with reactions to octreotide!...

https://connect.mayoclinic.org/comment/994669/

Discussion: Rash/Hives with Octreotide injection

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2024

Hello @carolc66 and welcome to the NETs discussion group on Mayo Connect. While I've had three...

https://connect.mayoclinic.org/comment/748669/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2022

I can only answer for lung. If you have a carcinoid tumor in your lung, the...

https://connect.mayoclinic.org/comment/1254782/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

UCLA NETs team is coordinating with my local breast oncologist. Works great so I can get...

https://connect.mayoclinic.org/comment/1179348/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2024

I believe that Octreotide scan is older and has been replaced by PET scan these days....

https://connect.mayoclinic.org/comment/1388323/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 6, 2025

BTW, I’m in the Cam2029 Clinical Trial at Mayo/Jacksonville and tolerating biweekly octreotide injections very well...

https://connect.mayoclinic.org/comment/1065502/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 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

My husband is on 28 day octreotide shots in addition to the cap/tem. No hypoglycemic episodes...

https://connect.mayoclinic.org/comment/943958/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2023

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