Neuroendocrine Tumors (NETs) Support Group

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Comment

The carcinoid heart disease caused a lot of swelling to the point it was putting pressure...

https://connect.mayoclinic.org/comment/911346/

Discussion: Has anyone had NETs metastasized to heart?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 11, 2023

Comment

I was diagnosed type 2 diabetes 2 years ago when I was diagnosed with carcinoid syndrome.....

https://connect.mayoclinic.org/comment/1233965/

Discussion: Anyone dealing with Carcinoid NETs with Diabetes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10 5:22pm

Comment

I started Lanreotide February 2023, didn’t stop the hot flashes (carcinoid syndrome). Dr switched me to...

https://connect.mayoclinic.org/comment/1289422/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25 8:10am

Comment

I was diagnosed with NET’s starting in small bowel and metastasized to liver, I’ve been on...

https://connect.mayoclinic.org/comment/1283550/

Discussion: NET in jejunum spread to liver: Treatment options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 16 6:11pm

Comment

They call the disease Zebras because no 2 are the same I never had a hot...

https://connect.mayoclinic.org/comment/1196548/

Discussion: What does my dentist need to know about my NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 24, 2024

Comment

I’ve been on Ocreotide for about 18 months it has worked great on the hot flashes,...

https://connect.mayoclinic.org/comment/1194070/

Discussion: Still have symptoms after surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 20, 2024

Comment

Thank you. Yes my last 4th treatment was on the 14th. Several of my labs came...

https://connect.mayoclinic.org/comment/257043/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 15, 2020

Comment

@hopeful33250 Wow - what a great article and information. No, I didn't know about octreotride. I...

https://connect.mayoclinic.org/comment/297055/

Discussion: Anyone have neuroendocrine tumor (NETs) of the breast?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2020

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 should mind my own business However! I have had 4 different options if there is...

https://connect.mayoclinic.org/comment/1028520/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 6, 2024

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