Neuroendocrine Tumors (NETs) Support Group

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Comment

I have had four rounds of Lutathera. I continue to be on an injection of Lanreotide...

https://connect.mayoclinic.org/comment/806746/

Discussion: Recurrence with Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5, 2023

Comment

@ant12 One more thing, lanreotide/octreotide injections can really help with carcinoid syndrome -- the flushing, diarrhea,...

https://connect.mayoclinic.org/comment/1033639/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2024

Comment

My spouse was diagnosed with GEP-NET and "heavy load" of tumors on the the small intestines...

https://connect.mayoclinic.org/comment/959684/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 5, 2023

Comment

I have functioning gastrinomas the lanreotide helped my symptom control significantly and I started right after...

https://connect.mayoclinic.org/comment/1296743/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2025

Comment

Interesting I never had any symptoms until I was put on Lanreotide for growth and like...

https://connect.mayoclinic.org/comment/1169907/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2024

Comment

I have pancreatic NET , grade 2, stage 4 with liver metastases. Had debulking surgery on...

https://connect.mayoclinic.org/comment/1286484/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2025

Comment

I have we'll differentiated, grade 2 NET in tail of pancreas and spread to liver. Have...

https://connect.mayoclinic.org/comment/1266440/

Discussion: Well differentiated Neuroendocrine Grade 2 in rectum

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

Comment

@zacharycat My progression and treatments: diagnosed with Nets stage 4 mets to liver Jan. 2021, well...

https://connect.mayoclinic.org/comment/1537920/

Discussion: Is anyone taking cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 2 days ago

Comment

My pain was caused by a statin I was taking for glucose control. The doctors also...

https://connect.mayoclinic.org/comment/1094448/

Discussion: Pain in hands, arms and shoulders with pNET stage 4

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2024

Comment

I guess I’ve been blessed had my first Lanreotide shot February 16th, no side effects, and...

https://connect.mayoclinic.org/comment/826436/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2023

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