Neuroendocrine Tumors (NETs) Support Group | Page 7

Thank you @hopeful33250, it is much appreciated. She has had a CT scan and a Tektrotyd...

https://connect.mayoclinic.org/comment/749330/

Discussion: Support for Young Adult with carcinoid tumor on ovary

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 14, 2022

Yes, however I take Octreotide instead of the LAN. I’ve done a food journal and found...

https://connect.mayoclinic.org/comment/1445324/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 23, 2025

@pipo It's a long list. Distal Pancreatectomy Y90 to both lobes of liver Octreotide/Lanreotide Cyberknife to...

https://connect.mayoclinic.org/comment/1407713/

Discussion: Has anyone had NET show up on CT scan, I had CT scan in 23

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2025

@nannybb Oh, and the only followup for the DIPNECH/NETs has been CT scans at various intervals...

https://connect.mayoclinic.org/comment/1540765/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1 11:19pm

At minimum every 6 months, but also as needed if symptoms dictate. My endocrinologist is very...

https://connect.mayoclinic.org/comment/843305/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 14, 2023

My brother had PRRT after having surgery and Octreotide injections every 28 days. The tumor growth...

https://connect.mayoclinic.org/comment/877313/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2023

I asked my oncologist about the NO EPI and if it should be on my medical...

https://connect.mayoclinic.org/comment/137547/

Discussion: My Husband was newly diagnosed with Carcinoid Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 31, 2017

Hey Mark, I've had Octreotide, Lanreotide, and SI resection surgery. I'm currently doing monthly Lanreotide shots....

https://connect.mayoclinic.org/comment/1410494/

Discussion: NET's Metastasis to Brain

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2025

Sorry to hear about your cancer and fatigue. I’ve been in treatment for recurrent breast cancer,...

https://connect.mayoclinic.org/comment/1552421/

Discussion: Why do I get so tired so easy?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17 2:55am

@nana120 I wasn't told of any dietary restrictions when I started my octreotide injections, but maybe...

https://connect.mayoclinic.org/comment/937831/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 28, 2023

I was diagnosed March 2022 stage 4 grade 2 18%, primary tumour on the tail of...

https://connect.mayoclinic.org/comment/1049788/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2024

Very interested in your second opinion that indicated you did not need the Octreotide injections. I...

https://connect.mayoclinic.org/comment/1171874/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

@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: Mar 29 10:59am

What treatment did they prescribe when your tumors were found 16 years ago? How long have...

https://connect.mayoclinic.org/comment/1179256/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2024

*Update* My treatment regimen has been changed....it was 20mg octreotide every 28days it has been changed...

https://connect.mayoclinic.org/comment/1106072/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2024

I didn’t have success with my Dotatate scan either. I recently started the octreotide shots and...

https://connect.mayoclinic.org/comment/1358995/

Discussion: Recently diagnosed with a NET in my middle lobe of my right lung.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 29, 2025

@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

After a year on Octreotide 2 of my 16 Tumors showed some growth, ( No New...

https://connect.mayoclinic.org/comment/1056307/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024

One of the first things they did for my husband was to put him on OCTREOTIDE...

https://connect.mayoclinic.org/comment/895361/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2023

Before I was put on Lanreotide I had no symptoms Lanreotide gave me such a horrible...

https://connect.mayoclinic.org/comment/1249217/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2025