Neuroendocrine Tumors (NETs) Support Group

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Comments (641)

Yes, I would say your throat clearing is from DIPNECH. Octreotide fixed that for me. Yes,...

https://connect.mayoclinic.org/comment/1330274/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2025

My octreotide injections are scheduled every 28 days, and my next 3 are on the calendar.....

https://connect.mayoclinic.org/comment/901161/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2023

I have hair loss not sure if it is from PRRT treatment or the octreotide treatment...

https://connect.mayoclinic.org/comment/1389916/

Discussion: PRRT and hair loss

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 8, 2025

@kdubbs Welcome to the DIPNECH family as it’s rare. I have both DIPNECH and lung NETs...

https://connect.mayoclinic.org/comment/1391732/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2025

I did the Lanreotide injections for 3 months Then switched To Octreotide which I am currently...

https://connect.mayoclinic.org/comment/819293/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2023

Hi, interesting. What is a octreotide scan then? I read that it helps find them...well, I'll...

https://connect.mayoclinic.org/comment/1388191/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 6, 2025

@nannybb I have extremely dry eyes as well. Did octreotide make it worse? I don’t know....

https://connect.mayoclinic.org/comment/1541536/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2 8:10pm

Hi, who iz your oncologist? I see Dr. Diane Reidy-Lagunes and Lindsay Juste (at 53rd Street)...

https://connect.mayoclinic.org/comment/812159/

Discussion: Scared - Suspected NET on tail of the pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2023

Thanks @hopeful33250 ! The PET was negative, I did a 5-day trial of short acting Octreotide...

https://connect.mayoclinic.org/comment/271268/

Discussion: Possible NET with No Evidence of Tumor: Mediastinal Mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 21, 2019

Note: I am not a doctor - Yes, octreotide injections are much faster, however, the injector...

https://connect.mayoclinic.org/comment/1428265/

Discussion: PET Ga-68 Dodatate Scan & Octreotide LAR Injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1, 2025

Hello 👋🏻 My treatment was with Octreotide (Sandostatina LAR30) One each 4 weeks, 18 doses. Between...

https://connect.mayoclinic.org/comment/794591/

Discussion: PET Ga-68 Scan Scheduling vs. Most Recent Lanreotide Injection

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2023

I have two carcinoid tumors on my liver and they have been there for many years....

https://connect.mayoclinic.org/comment/1111420/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2024

My surgeon suspects that I have a carcinoid tumor in my intestine and is going to...

https://connect.mayoclinic.org/comment/802671/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2023

Were your tumors growing while you were on Octreotide and that is why you were given...

https://connect.mayoclinic.org/comment/1344050/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 8, 2025

As if monthly shots aren’t enough to deal with, checking my last statement I noticed I...

https://connect.mayoclinic.org/comment/1489674/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23 6:52pm

I’ve been taking monthly Octreotide injections post op for a year & my SI NETS with...

https://connect.mayoclinic.org/comment/1447938/

Discussion: Anyone had positive results from Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 26, 2025

Anyone diagnosed with DIPNECH? I’ve had 3 injections of Octreotide so far. I started having GI...

https://connect.mayoclinic.org/comment/1193098/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2024

In addition to my chronic cough, I had issues with mucous and shortness of breath upon...

https://connect.mayoclinic.org/comment/1250966/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2025

Hello @pennypowell I'm glad to hear that she wants to see another oncologist. You mentioned that...

https://connect.mayoclinic.org/comment/799643/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2023

Three weeks after 2nd surgery I started the Octreotide injections; no adverse side effects except for...

https://connect.mayoclinic.org/comment/1269922/

Discussion: Has anyone had the peritoneal stripping surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30, 2025

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