Neuroendocrine Tumors (NETs) Support Group

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Allow me to be the acronym buster for this discussion: - SSA = Somatostatin analogue https://www.cancerresearchuk.org/about-cancer/neuroendocrine-tumours-nets/treatment/somatostatin-analogues/what-are...

https://connect.mayoclinic.org/comment/1001311/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2024

Comment

I have also been diagnosed with DIPNECH and have probably had for 20 years. I have...

https://connect.mayoclinic.org/comment/1172007/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

Comment

@jhhaas Glad the surgery is behind you. Yes, you should have a NETs multidisciplinary team at...

https://connect.mayoclinic.org/comment/976633/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 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

@rachismarie Sorry to hear about all you’re going thru. I understand how scary it can all...

https://connect.mayoclinic.org/comment/1181823/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

Comment

I've been told by Oncologist they are working on oral versions of Octreotide and Lanreotide. But...

https://connect.mayoclinic.org/comment/1334042/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24 9:35am

Comment

Hi @helloitsme, your reaction to finding out you have NETs is normal. Even though NETs is...

https://connect.mayoclinic.org/comment/851198/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

Comment

@jhhaas Good idea to get a second opinion. Glad you don’t have coughing. Octreotide also helps...

https://connect.mayoclinic.org/comment/1143685/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2024

Comment

Thank you! I'm actually doing good with the octreotide( bi-weekly shots) and hopefully scheduled scans in...

https://connect.mayoclinic.org/comment/1000147/

Discussion: PNET on tail of pancreas with numerous bilobar hepatic metastases

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2024

Comment

Was an insulinoma the cause for his hypoglycemia? I have not researched on Octreotide much. Was...

https://connect.mayoclinic.org/comment/895885/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2023

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