Neuroendocrine Tumors (NETs) Support Group

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Comment

Hello Matt2024 and others with MENS1. Similar experience: parathyroids removed and one relocated to inner arm....

https://connect.mayoclinic.org/comment/1312686/

Discussion: Recently diagnosed with MEN1

Support Group: Diabetes & Endocrine System

Posted: May 25, 2025

Comment

I am also one of the lucky ones with carcinoid syndrome.. started with Lanreotide which didn’t...

https://connect.mayoclinic.org/comment/1123918/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2024

Comment

I go to KU Med, and they have always scheduled my PET scans for the day...

https://connect.mayoclinic.org/comment/896642/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

Comment

Dear Terry, My spouse was miss diagnosed for years with GERD. He has a "heavy tumor...

https://connect.mayoclinic.org/comment/973944/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 2, 2023

Comment

I feel for you with the difficult to control blood sugars. For a time I was...

https://connect.mayoclinic.org/comment/838750/

Discussion: Ways to control hypoglycemia caused by insulinoma in pancreas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2023

Comment

Don’t remember the grade in our case, but my wife had stage 4. She had primary...

https://connect.mayoclinic.org/comment/1344908/

Discussion: PRRT and lanreotide questions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 10, 2025

Comment

Thank you so much for this wealth of information. I do have respiratory issues. However, since...

https://connect.mayoclinic.org/comment/1532989/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22 3:06pm

Comment

I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was...

https://connect.mayoclinic.org/comment/746044/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 6, 2022

Comment

Hi Joy (good positive name) I believe your primary source is in your sm. intestine (same...

https://connect.mayoclinic.org/comment/953010/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2023

Comment

Yes, I have hair thinning. My curly gray hair measures a few inches below my shoulders....

https://connect.mayoclinic.org/comment/1165778/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2024

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