Neuroendocrine Tumors (NETs) Support Group

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Comments (2,060)

My husband has been on CAP and TEM and also a monthly injection of lanreotide for...

https://connect.mayoclinic.org/comment/885058/

Discussion: Looking for information on CAPTEM treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 25, 2023

Wow! You are truly a determined person and a good example for me. I have often...

https://connect.mayoclinic.org/comment/854458/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

Hi Teresa. I now know that I am NET. I didn't even know what that was...

https://connect.mayoclinic.org/comment/776779/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 23, 2022

The thing that gives me hope is that all my blood work was normal. Like liver,...

https://connect.mayoclinic.org/comment/1195438/

Discussion: CEA test: Just starting the diagnostic testing phase: Waiting is hard

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 22, 2024

Lanreotide monthly since dec 2023. NET currently stable after scan in May . Diagnosed in Oct...

https://connect.mayoclinic.org/comment/1104370/

Discussion: What is a normal range for Chromogranin A test? Mine was 99 in 2021.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 12, 2024

I’ll speak to 3 & 4. My wife with NETs (ileum), 50 METS to liver has...

https://connect.mayoclinic.org/comment/134661/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 25, 2018

Hi, I had 1.5m of my ileum removed 2022 due to nets. Was in hospital for...

https://connect.mayoclinic.org/comment/1273504/

Discussion: Small Intestine Resection

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 3 3:06pm

We sound very similar. Small bowel primary with mets to liver. Started octreotide after bowel resection....

https://connect.mayoclinic.org/comment/1218810/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22 9:23am

Thank you. I do have a pain doctor at Mayo - for another (random?) nerve pain...

https://connect.mayoclinic.org/comment/905585/

Discussion: Pain relief when lying flat?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 1, 2023

Hi, I too have NETs that were discovered in my ileum after being in the ER...

https://connect.mayoclinic.org/comment/777826/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 27, 2022

Hello Karen (@kjstein) Welcome to Mayo Clinic Connect! I am glad to hear that you have...

https://connect.mayoclinic.org/comment/713478/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2022

I, too, have high grade (2/3) metastatic NETs—liver, pancreas, lungs, bone, adrenal gland, parotid gland. I...

https://connect.mayoclinic.org/comment/811356/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2023

How old are you? Why is surgery not an option ? Im 55yr old male. I...

https://connect.mayoclinic.org/comment/917185/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2023

I’m so glad you reached out to us with your swelling concerns. My treatment of Somatuline...

https://connect.mayoclinic.org/comment/883717/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2023

We did not have a choice with a mass on pancreas. Had to remove tail, spleen...

https://connect.mayoclinic.org/comment/842059/

Discussion: Who has had Distal Pancreatectomy and regretted it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

I also had multiple small lesions in my liver and a few larger ones. I decided...

https://connect.mayoclinic.org/comment/813447/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2023

Great info and of course I’m sorry for all you’ve been through. I have not had...

https://connect.mayoclinic.org/comment/796507/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 14, 2023

Oncologists always say no it seems. Next step-see a noted surgeon who deals with liver/pancreas in...

https://connect.mayoclinic.org/comment/1314636/

Discussion: Pancreatic Cancer Q&A with Dr. Stauffer, Mayo Surgeon: May 29

Support Group: Pancreatic Cancer

Posted: May 28 7:31am

Hello, I too was diagnosed with Carcinoid Center in May of 2017. Mine is located in...

https://connect.mayoclinic.org/comment/184516/

Discussion: Carcinoid Cancer and working

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2018

I was diagnosed in 1993 by a doctor who performed a colonoscopy after heavy rectal bleeding....

https://connect.mayoclinic.org/comment/771371/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 9, 2022

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