Neuroendocrine Tumors (NETs) Support Group

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Comment

Hi @mimi206 I have DIPNECH and lung NETs (typical carcinoids) with 50+ nodules so we are...

https://connect.mayoclinic.org/comment/1250591/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4, 2025

Comment

It has probably been close to 10 years since DIPNECH was suspected in me. In the...

https://connect.mayoclinic.org/comment/881201/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

Comment

I take octreotide injections for lung NETs and DIPNECH to control respiratory symptoms (works great) and...

https://connect.mayoclinic.org/comment/1346205/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2025

Comment

Wow hats off to you on your journey what an experience you learned from and handled...

https://connect.mayoclinic.org/comment/821372/

Discussion: NETs: Competing Pathologies--how to sort it all out?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2023

Comment

Hello @gprior, I understand your interest in reading about how others have treated DIPNECH. You mentioned...

https://connect.mayoclinic.org/comment/1223548/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2025

Comment

I think you hit the nail on the head with the workaround. That being said, I...

https://connect.mayoclinic.org/comment/1126890/

Discussion: Lanreotide eventually becomes less effective, why?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 19, 2024

Comment

@mhcohan Yes, I had a 26 mm lung NET destroyed with microwave ablation 4 years ago....

https://connect.mayoclinic.org/comment/1415806/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

Comment

@californiazebra Thank you so much for all that information. I looked up DIPNECH as soon as...

https://connect.mayoclinic.org/comment/1432510/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

Comment

Hello @jan355 and welcome to Mayo Connect. I see that @californiazebra has already posted with you....

https://connect.mayoclinic.org/comment/1221355/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2025

Comment

Hi @marciamiller I also have DIPNECH and lung NETS (cancer). I’m guessing you saw Dr. Ramirez....

https://connect.mayoclinic.org/comment/1162740/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2024

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