Neuroendocrine Tumors (NETs) Support Group

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I also have stage 4 metastasized from small intestine to the liver. On Ocreotide injections for...

https://connect.mayoclinic.org/comment/1408667/

Discussion: 2nd 3 month follow up

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 5, 2025

I too am looking for some feedback on how others deal with NET. I've had PRRT...

https://connect.mayoclinic.org/comment/1190158/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 14, 2024

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, 2025

My experience: After discovery in Mar./2023 of a Grade 2, Small intestine NETs that metastasized to...

https://connect.mayoclinic.org/comment/1061064/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2024

@grange: My Lutathera PRRT treatment did produce fatigue that I accepted as my time to concentrate...

https://connect.mayoclinic.org/comment/1509342/

Discussion: Does anyone have persistent nausea and fatigue post Lutathera?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18 11:30pm

Hello bnjncrew, I'm also having severe edema in my legs and feet. I have also developed...

https://connect.mayoclinic.org/comment/1066245/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 11, 2024

Nice to hear from a fellow Badger. Certianly hope all goes well for your wife's recovery...

https://connect.mayoclinic.org/comment/827544/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2023

Here is a link from the Carcinoid Cancer Foundation about 10 Highlights of the Year 2014...

https://connect.mayoclinic.org/comment/127203/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2016

Hello @gapsc, I am also a patient with NETs. I had my first COVID vaccination last...

https://connect.mayoclinic.org/comment/257062/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 18, 2021

Hey all. My husband was diagnosed with NET that metastasized to liver 5 years ago. Since...

https://connect.mayoclinic.org/comment/1356472/

Discussion: NET tumor of pancreas (1 cm) diagnosed

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2025

We did find this out that there is extra help for Medicare patients with the drug...

https://connect.mayoclinic.org/comment/1135041/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2024

I meet some of his staff they are wonderful The issue I have is that this...

https://connect.mayoclinic.org/comment/1024682/

Discussion: 68Ga DOTATATE Positron Emission Tomography (PET) at Mayo Clinic

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 29, 2024

@terlato, Sorry to hear that you're having these frustrations in addition to dealing with the disease....

https://connect.mayoclinic.org/comment/982860/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2023

Yes, there is a diagnostic test you can and should have. It's a PT CT Dototate...

https://connect.mayoclinic.org/comment/792451/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2023

@lns83 Currently still on Ocreotide (2 shots every 28 days) ( I also have carcinoid syndrome...

https://connect.mayoclinic.org/comment/1414321/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 13, 2025

Thank god for our multi discipline team of NET specialists, surgeons, chemo specialists, etc. they have...

https://connect.mayoclinic.org/comment/985488/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 23, 2023

I did not have my first scan until 3 months after my last infusion. The nuclear...

https://connect.mayoclinic.org/comment/730194/

Discussion: PRRT for NETs: Questioning whether I should continue or not

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2022

Just about 1 year after starting Lanreotide. My initial diagnosis (discovered during a scan for another...

https://connect.mayoclinic.org/comment/729621/

Discussion: PRRT for NETs: Questioning whether I should continue or not

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2022

Hi, Pete. I've had a similar situation. I had a robotic surgery for my PNET in...

https://connect.mayoclinic.org/comment/817091/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2023

I was diagnosed in March 2018 with NETs in multiple locations after having a blockage in...

https://connect.mayoclinic.org/comment/807089/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

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