Neuroendocrine Tumors (NETs) Support Group

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Comment

Diagnosed with NELM 2017 with unknown primary, well differentiated grade 2 in liver and abdominal area....

https://connect.mayoclinic.org/comment/998435/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2024

Comment

As I said there have no treatments for the past 5 months. I did have Lanreotide...

https://connect.mayoclinic.org/comment/1209962/

Discussion: I am one year out with my diagnosis just finished 4th round of PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12, 2025

Comment

My 88 year old loved one has had a gallbladder full of stones before starting lanreotide...

https://connect.mayoclinic.org/comment/1317638/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 1, 2025

Comment

Welcome. Have you posted before? That's a lot to unpack. You have a rare type of...

https://connect.mayoclinic.org/comment/1406878/

Discussion: Several inoperable paragangliomas, on lanreotide, now big mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2025

Comment

@dbamos1945 - how long after Lanreotide ( how many injections?) you noticed hairloss? I had my...

https://connect.mayoclinic.org/comment/868957/

Discussion: Facial and lip sores from lanreotide injections for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 29, 2023

Comment

I have had many PET scans but they have not ever requested my every three week...

https://connect.mayoclinic.org/comment/1425181/

Discussion: PET Ga-68 Dodatate Scan & Octreotide LAR Injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2025

Comment

Lanreotide only seems to control symptoms for me it did not shrink tumors. My tumors did...

https://connect.mayoclinic.org/comment/1287242/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2025

Comment

I was diagnosed July of 2024. I recently started lanreotide injections a couple of months ago....

https://connect.mayoclinic.org/comment/1344472/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9, 2025

Comment

Thank you. I’m curious if you had surgery to remove the liver Mets and the primary...

https://connect.mayoclinic.org/comment/1232879/

Discussion: Lanreotide Question: Why start before the next scan?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2025

Comment

I have scans every six months plus I do my Lanreotide injection every 28 days and...

https://connect.mayoclinic.org/comment/1279986/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2025