Neuroendocrine Tumors (NETs) Support Group

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Comment

@Hollywood81: I am anxiously following your case because I am now receiving PRRT Lutathera treatment for...

https://connect.mayoclinic.org/comment/1151563/

Discussion: Straight to the liver: Anyone have NETs originating in strange areas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 4, 2024

Comment

I should mention that my primary (origin) started in the small bowel and metastasized into my...

https://connect.mayoclinic.org/comment/1227757/

Discussion: Histotripsy near St. Louis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2, 2025

Comment

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

Comment

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, 2025

Comment

"What would you do?" you asked. I"m pretty much in the same situation. I still have...

https://connect.mayoclinic.org/comment/1227644/

Discussion: Cu-64 Dotatate PET results show no malignancy. What’s next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2, 2025

Comment

@tomrennie I’m curious about how your bones were diagnosed. My net was small bowel and ovary...

https://connect.mayoclinic.org/comment/1478868/

Discussion: What does the future look like for a stage 4 NET patient?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10 11:48am

Comment

I had a liver tumor biopsy in October even though the doctors and I all knew...

https://connect.mayoclinic.org/comment/795174/

Discussion: Bland embolization or transarterial chemoembolization (TACE)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 11, 2023

Comment

Wow thats a lot to deal with at once. I've been dealing with it since 2020...

https://connect.mayoclinic.org/comment/1289339/

Discussion: New To NETS - Stage 4 / Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2025

Comment

I’m very interested in joining this group and sharing/learning to control symptoms of small bowel blockage....

https://connect.mayoclinic.org/comment/1403258/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Sep 28, 2025

Comment

Hello, Am Ayesha from Massachusetts, just diagnosed with small bowel carcinoma, 2 weeks ago. I have...

https://connect.mayoclinic.org/comment/765099/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2022

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