Neuroendocrine Tumors (NETs) Support Group

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Hi @dak10 and @mimmy. Thank you for sharing your lung NETs info. I also have typical...

https://connect.mayoclinic.org/comment/835869/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2023

I have received the short term Octreotide while in the hospital. It was given to me...

https://connect.mayoclinic.org/comment/1132551/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 28, 2024

Thank you so much for sharing your journey. Wishing you good health and lots of adventures!...

https://connect.mayoclinic.org/comment/845245/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

Octreotide LAR is technically designed to control to symptoms of carcinoid (diarrhea, flushing, nausea, etc) which...

https://connect.mayoclinic.org/comment/1060800/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2024

Thank you, I feel great! Recent CT FU with oncologist shows only one area of concern....

https://connect.mayoclinic.org/comment/1272555/

Discussion: Has anyone had the peritoneal stripping surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2025

https://www.google.com/search?q=octreotide+not+containing+the+growth+of+neuroendocrine+cancer&rlz=1C1UEAD_enUS1116US1116&oq=octreotide+not+containing+the+growth+of+neuroendocrine+cancer&gs_lcrp=EgZjaHJvbWUyBggAEEUYOTIHCAEQIRiPAjIHCAIQIRiPAtIBCTIzODIzajBqN6gCALACAA&sourceid=chrome&ie=UTF-8 Above is the source. I have read that it is not 100% effective with everyone...

https://connect.mayoclinic.org/comment/1346165/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2025

@drkarasheed, you may wish to join these relevant discussions: - Pancreatic Cancer: Anyone have liver metastasis...

https://connect.mayoclinic.org/comment/1304347/

Discussion: I’m living with Pancreatic Neuroendocrine Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 14, 2025

Hi, I’m new to post and fairly new to be diagnosed. In October 2025 I went...

https://connect.mayoclinic.org/comment/1552699/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17 9:57am

@dipnech67 Robert Ramirez MD at Vanderbilt in Nashville is a NETS specialist who talks about DIPNECH...

https://connect.mayoclinic.org/comment/1054381/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2024

Did the doctors give you any thoughts on why the tumors were growing fast when you...

https://connect.mayoclinic.org/comment/1344033/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 8, 2025

@pavlina60 Thank you .wish u a healthy life. My sister has completed her Etoposide and Cisplatin...

https://connect.mayoclinic.org/comment/1409683/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2025

I need to know how long after PRRT treatment should you get a MRI with contrast...

https://connect.mayoclinic.org/comment/1169156/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2024

Hi...I had the gallium PET. It was negative. But a CT enterography found it... I'm not...

https://connect.mayoclinic.org/comment/1386858/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 4, 2025

@markmark007 The nurse told me the manufacturer was no longer making lanreotide. Ive had more fatigue...

https://connect.mayoclinic.org/comment/1428966/

Discussion: PET Ga-68 Dodatate Scan & Octreotide LAR Injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 2, 2025

We received the confirmation from Mayo. His diagnosis is Atypical Stage 3/grade 2. He was given...

https://connect.mayoclinic.org/comment/1330147/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 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. Your situation is very much like mine. I was diagnosed last November. I'm receiving monthly...

https://connect.mayoclinic.org/comment/907888/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2023

@dadcue Hello Mike, Your imaging sounds a lot like mine from several months ago. If you...

https://connect.mayoclinic.org/comment/1540119/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1 7:21am

Only if the give me anesthesia will I have to get an injection of octreotide I...

https://connect.mayoclinic.org/comment/1322184/

Discussion: Root canal without Epinephrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 7, 2025

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