Neuroendocrine Tumors (NETs) Support Group

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Comments (569)

@gmapam Your NETs oncology team should be able to tell you. You need to have somatostatin...

https://connect.mayoclinic.org/comment/912394/

Discussion: How do I know somatostatin is in my system?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2023

Hi, I was diagnosed 8-7-23 with NET of the small intestines. I am a Grade 2...

https://connect.mayoclinic.org/comment/1015199/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2024

Hi @bcraft. I'm new to this site too and what brought me here was a search...

https://connect.mayoclinic.org/comment/838450/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2023

I had surgery in 2016 (8-years ago) to remove tumor / mass at appendix and five...

https://connect.mayoclinic.org/comment/1142526/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

Gig666, I am somewhat appalled that your docs didn't give you more options rather than just...

https://connect.mayoclinic.org/comment/1054944/

Discussion: NET not found on PET/CT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2024

When I was diagnosed that my NET had come back 2 1/2 years after my liver...

https://connect.mayoclinic.org/comment/822159/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2023

Hi Theresa, My dietary journey with this disease has been long and troublesome, so I will...

https://connect.mayoclinic.org/comment/673106/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2022

I am 48, well-diff, grade 3 (ki67 17-29), unknown primary with tumors in liver (innumerable), pancreas,...

https://connect.mayoclinic.org/comment/1117054/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2024

Hi Teresa, Hubs is currently stable. His treatment is the Sandostatin/Octreotide. It appears that when his...

https://connect.mayoclinic.org/comment/1270087/

Discussion: New Diagnosis: husband's labs are all indicating NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30 11:31am

Hi, in case it's of interest, the following describes my recent NET experience. Following a blockage,...

https://connect.mayoclinic.org/comment/782928/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 9, 2022

mgb20, Reading your post was like reading my story - 5 years ago (3/18) I, too,...

https://connect.mayoclinic.org/comment/830736/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 23, 2023

In reply to your questions, I had breast cancer 9 years ago, so periodically have scans...

https://connect.mayoclinic.org/comment/1167626/

Discussion: Dotatate lights only in liver, but report says metastatic to liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2024

Dbamos1945 and bubbles 2023 - Dbamos, your response struck a cord with me as your response...

https://connect.mayoclinic.org/comment/885814/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023

We did find this out that there is extra help for Medicare patients with the drug...

https://connect.mayoclinic.org/comment/1135041/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2024

Hi jestjohn, I’d be interested to know the results of your Dec. 15, 2023 PET scan....

https://connect.mayoclinic.org/comment/1015601/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2024

Hi there! Your diet doesn't sound dull to me at all! I believe this diet or...

https://connect.mayoclinic.org/comment/856433/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 8, 2023

This site is new to me. I was diagnosed with NET and Carcinoid Syndrome in 2013....

https://connect.mayoclinic.org/comment/849237/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2023

We been missing in action due to more hospitalizations. We did just get a bit of...

https://connect.mayoclinic.org/comment/1329420/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17 5:59pm

Nana120, welcome to the Mayo Connect online support group for Neuroendocrine tumor patients. I hope you’ll...

https://connect.mayoclinic.org/comment/898735/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

Thanks for all the comments regarding my son. His medical care is 24-7 sometimes sitting is...

https://connect.mayoclinic.org/comment/1303165/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13 9:22am

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