Neuroendocrine Tumors (NETs) Support Group

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Comment

I have been told by multiple oncologists that along with managing symptoms it also inhibits the...

https://connect.mayoclinic.org/comment/1345975/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2025

Comment

My husband started Roth Octreotide & has now switched to Lanreotide, both shots makes him itch...

https://connect.mayoclinic.org/comment/1334316/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2025

Comment

The protocol used by most oncologists is based on the National Comprehensive Cancer Network's recommendations, and...

https://connect.mayoclinic.org/comment/802916/

Discussion: What's your NETs treatment and surveillance protocol?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2023

Comment

Everyones situation is different, I started with Lanreotide, for the first 3 months, then switched to...

https://connect.mayoclinic.org/comment/1364750/

Discussion: Interested in your experience with treatments of PRRT vs surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 6, 2025

Comment

So far I do not have any side effects to SBRT. Am getting 5 treatments and...

https://connect.mayoclinic.org/comment/838786/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2023

Comment

I totally get the "Get it outta me" mentality. As others have said, due diligence is...

https://connect.mayoclinic.org/comment/1386533/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 4, 2025

Comment

@calimomma Hard to answer your question because you have a lot going on and I’m not...

https://connect.mayoclinic.org/comment/1232671/

Discussion: Relationship between endometrium cancer and DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2025

Comment

Missterri, I had those symptoms as well, the lobectomy really helped and the chemo and proton...

https://connect.mayoclinic.org/comment/1488022/

Discussion: What does the future look like for a stage 4 NET patient?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21 11:11am

Comment

I’ve been taking octreotide injections for DIPNECH and lung NETs for 4 years. No GI issues...

https://connect.mayoclinic.org/comment/1199060/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2024

Comment

@mdmarquardt the octreotide really took my appetite away the first year or so. I'm still not...

https://connect.mayoclinic.org/comment/937832/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 28, 2023

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