Neuroendocrine Tumors (NETs) Support Group

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Comment

@amongst That's great that you have a specialist, because treatment with an unknown primary adds an...

https://connect.mayoclinic.org/comment/1499461/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6 11:29am

Comment

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

Comment

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

Comment

My hematologist is the one who diagnosed my PNET due to extremely low platelet count. She...

https://connect.mayoclinic.org/comment/1049783/

Discussion: Anyone had a trend of their platelets going too low? What action?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2024

Comment

Yes. I had a Dotatate scan and the cancer has spread to my liver and 20...

https://connect.mayoclinic.org/comment/980712/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 14, 2023

Comment

Was diagnosed in March of this year. Origin in mesentary lining.Metastasized to liver, and elsewhere. I...

https://connect.mayoclinic.org/comment/774825/

Discussion: Pituitary and pNET: Can't do the things I love anymore

Support Group: Brain Tumor

Posted: Nov 18, 2022

Comment

Thank you Lindabees! Our emotions are all over the place right now. I hope there is...

https://connect.mayoclinic.org/comment/1206203/

Discussion: Hello. I am new here. My husband was recently diagnosed with NETs.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2025

Comment

It just makes me nervous there is so few cases that I have found that a...

https://connect.mayoclinic.org/comment/952691/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2023

Comment

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

Comment

I have we'll differentiated, grade 2 NET in tail of pancreas and spread to liver. Have...

https://connect.mayoclinic.org/comment/1266440/

Discussion: Well differentiated Neuroendocrine Grade 2 in rectum

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

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