Neuroendocrine Tumors (NETs) Support Group

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A few months ago, they detected 2 NETs in my liver. One golf ball size. The...

https://connect.mayoclinic.org/comment/809673/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 11, 2023

Hello @felo and welcome to Mayo Clinic Connect. I can understand that you would want to...

https://connect.mayoclinic.org/comment/667746/

Discussion: Liver neuroendocrine tumors: I would like to talk with others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2022

Of course I’m not a doctor, Kim’s case is after 9 months of chemo, she had...

https://connect.mayoclinic.org/comment/877443/

Discussion: Is it common to start on Lanreotide with no known tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2023

We are a year and half into our journey in living with NET. I can’t remember...

https://connect.mayoclinic.org/comment/932424/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 19, 2023

My husband has had the insulinoma metastasized to liver since 2022. He also couldn’t do the...

https://connect.mayoclinic.org/comment/1144312/

Discussion: Pancreatic neuroendocrine insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20 5:34am

I do understand, @carcinoid. Your husband's weakend physical condition certainly might preempt him from some of...

https://connect.mayoclinic.org/comment/240133/

Discussion: Carcinoid cancer in intestine or NETs (Neuroendocrine Tumors)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 18, 2019

My brother was on a clinical trial using cabozantinib and nivolumab. Unfortunately, he had a lot...

https://connect.mayoclinic.org/comment/877316/

Discussion: Experiences with cabozantinib

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2023

Hello @willam, It has been a while since you last posted. How are you doing? Have...

https://connect.mayoclinic.org/comment/900512/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2023

Welcome, @teresea. You may be interested interested in this related discussion: - Bland embolization or transarterial...

https://connect.mayoclinic.org/comment/982346/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 17, 2023

The LACNET support group has a very interesting and supportive optimistic and helpful story the director...

https://connect.mayoclinic.org/comment/813998/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 19, 2023

@ahtaylor I would agree that you are blessed to be at Mayo and have such good...

https://connect.mayoclinic.org/comment/843301/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 14, 2023

I don't believe I have a team. Only symptoms are inconsistent bm's and some slight abdominal...

https://connect.mayoclinic.org/comment/1035653/

Discussion: Anyone have experience with "functioning" Pancreatic NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18 8:54am

Yes monthly Somatuline Depot until further notice. Quarterly MRI to track the 1.7cm NET in my...

https://connect.mayoclinic.org/comment/894429/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 12, 2023

The first MR after 3-months on Afinitor 10 mg daily showed stability to slightly improved liver...

https://connect.mayoclinic.org/comment/182422/

Discussion: PRRT has been approved by the FDA Jan 26, 2018, as expected

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 1, 2018

So glad to find this! Had NET surgery small intestine and mesentery in 2015 after diagnosis...

https://connect.mayoclinic.org/comment/827137/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 16, 2023

He had two tumors on his pancreas so they removed his pancreas in 2018. It has...

https://connect.mayoclinic.org/comment/292375/

Discussion: Multiple Endocrine Neoplasia 1 (MEN1): What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2020

I am a patient of Dr Starr's at Mayo Clinic Jacksonville. My NETS were ileum primary...

https://connect.mayoclinic.org/comment/876912/

Discussion: Where can I find a carcinoid syndrome specialist in Florida?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2023

Hi. Glad to have friends on the subject. Just had surgery-ilioectemy, lymph nodes were cancerous. New...

https://connect.mayoclinic.org/comment/817446/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2023

Hello Theresa. Can you tell me how serious a descending colon NET that has metastasized to...

https://connect.mayoclinic.org/comment/792586/

Discussion: Newly diagnosed - neuroendocrine tumor in intestines

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2023

Small intestine surgery in 1998, liver surgery in 2016, PRRT beginning this year. Two treatments, two...

https://connect.mayoclinic.org/comment/728930/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2022

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