Neuroendocrine Tumors (NETs) Support Group

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Comment

Hi @nana120 That's such great news to be stable!!! Sounds like the lanreotide is doing its...

https://connect.mayoclinic.org/comment/937205/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 27, 2023

Comment

@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

Comment

@triveraderubio I had to go back and read through this entire thread to remember what you...

https://connect.mayoclinic.org/comment/962925/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2023

Comment

Hi @ahtaylor -- I love your motto! I have always loved the "Never Give Up" poster...

https://connect.mayoclinic.org/comment/867775/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2023

Comment

Surgery to remove the malignant carcinoid (and right middle lobe) was on Oct 2. Surgeon wants...

https://connect.mayoclinic.org/comment/976626/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2023

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

Hi @cmc188 I have 50+ lung NETs tumors across both lungs. I also have DIPNECH (really...

https://connect.mayoclinic.org/comment/1199984/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

Comment

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

Comment

Hello @jhhaas, I appreciate you sharing your DIPNECH experience with @jan355. It does help to hear...

https://connect.mayoclinic.org/comment/1223032/

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2025

Comment

So have you considered octreotide injections for the DIPNECH? My allergy issues are respiratory. I was...

https://connect.mayoclinic.org/comment/1205603/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2025

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