Neuroendocrine Tumors (NETs) Support Group

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Comments (2,370)

Are you still on CapTem. I have been in on it for 6 months. Dr. Hopes...

https://connect.mayoclinic.org/comment/1367019/

Discussion: Neuroendocrine tumor pancreatic tail

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 9, 2025

My husband also has one in the small intestine that metastasized to the liver & spine,...

https://connect.mayoclinic.org/comment/885632/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023

I was diagnosed with multiple Net’s in the small bowel, and 16 Net’s on my liver...

https://connect.mayoclinic.org/comment/1023918/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 27, 2024

Hello dhtaylor! My HPB surgeon warned me that the medication used for NET care ( Somatulin/Lanreotide)...

https://connect.mayoclinic.org/comment/944197/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2023

I agree it's hard being one's own advocate. I don't even know what I should be...

https://connect.mayoclinic.org/comment/1334787/

Discussion: Should NET w/liver met patient stop rx that has Seratonin?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 25, 2025

Thanks for your reply. So it has not gotten any better for you over the years....

https://connect.mayoclinic.org/comment/1207776/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2025

My husband had a 50% tumor burden in his liver. He had radioembolization done in 2010....

https://connect.mayoclinic.org/comment/1174884/

Discussion: Radioembolization Is My Next Step

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2024

I do not see my specialist until mid June, but I did see my gp. I...

https://connect.mayoclinic.org/comment/1075835/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2024

Hi! I am also getting 4th mo SamotulineDepot injections due to small intestine NET primary with...

https://connect.mayoclinic.org/comment/810312/

Discussion: What's your NETs treatment and surveillance protocol?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 12, 2023

Hi I am happy to engage a conversation on my personal email if you would like!...

https://connect.mayoclinic.org/comment/807004/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

@dbamos1945 Very similar, well differentiated, grade 2, KI67- 6.6% Stage 4 , small intestine, metastasized to...

https://connect.mayoclinic.org/comment/1414315/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 13, 2025

100% agree, make sure the doctor is a NET specialist. I’m on my 3rd hospital. The...

https://connect.mayoclinic.org/comment/824035/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2023

Hello @osiejay26 and welcome to the NET discussion group on Mayo Connect. I can understand that...

https://connect.mayoclinic.org/comment/804430/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2023

@djchambers Can anyone provide side effects they experienced from CAPTEM treatment? I was told complete hair...

https://connect.mayoclinic.org/comment/1511203/

Discussion: NETs growing despite 3 months of capecitabine and temozolomide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 21 11:37am

I totally understand the desire for a conservative approach. While there is likely a primary somewhere,...

https://connect.mayoclinic.org/comment/1157998/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 16, 2024

I was diagnosed with a pnet metastasized to my liver and bones in 8/22. It was...

https://connect.mayoclinic.org/comment/1350623/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2025

I have pnets pancreatic primary many liver tumors they are functional gastrinomas grade 2 ki67 7%...

https://connect.mayoclinic.org/comment/1341847/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 5, 2025

Hi, My name is Cindy. I was just diagnosed with Grade 2 Stage 4 NET in...

https://connect.mayoclinic.org/comment/1202058/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 1, 2025

My wife, @Kim1965, was diagnosed with NET April 2022, with mass on tail of pancreas and...

https://connect.mayoclinic.org/comment/793540/

Discussion: Scared - Suspected NET on tail of the pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2023

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

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