Neuroendocrine Tumors (NETs) Support Group

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Comments (932)

jlsgt, I eat all sorts of raw veggies (tomatoes, cucumbers, lettuce, onions, broccoli, etc.) as well...

https://connect.mayoclinic.org/comment/1142978/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2024

Thank you for your quick response I took 3 infusions of Lanreotide in 2022 had to...

https://connect.mayoclinic.org/comment/1128751/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2024

Hello kim1965! Hope the drs choose the right treatment after seeing the results of the MRI!...

https://connect.mayoclinic.org/comment/887702/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 30, 2023

Hello @mimmy and welcome to Mayo Connect! I'm glad that you found this forum. It sounds...

https://connect.mayoclinic.org/comment/821922/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 6, 2023

Yes! I had the GJ tube removed Friday (3/3) - never used it, but had to...

https://connect.mayoclinic.org/comment/821228/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2023

I, too, have metastatic innumerable liver lesions, as well as in my pelvis, lymph nodes, and...

https://connect.mayoclinic.org/comment/811172/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2023

@coachv Hi can i ask a few questions. My og reply us below yours. For your...

https://connect.mayoclinic.org/comment/1515385/

Discussion: Recently been diagnosed with Paraganglioma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26 9:20pm

Greeting from Canada. So pleased to see that you folks are sharing your life on NETs....

https://connect.mayoclinic.org/comment/1066292/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 11, 2024

Good morning, NET group. My saga continues with the introduction of a new med protocol, Temozolomide....

https://connect.mayoclinic.org/comment/1060712/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2024

Hi @donnarushing55 He had a distal pancreatectomy in 2008 during which they discovered the many liver...

https://connect.mayoclinic.org/comment/1003991/

Discussion: PNET on tail of pancreas with numerous bilobar hepatic metastases

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2024

Stay positive, I had 15 years ago nec in my small intestine, surgery sucesfully but secondary...

https://connect.mayoclinic.org/comment/1288577/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2025

@cindypat1 The life expectancy data is flawed. It includes the very old, those diagnosed very late...

https://connect.mayoclinic.org/comment/1208295/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2025

Hi! I was recently… finally diagnosed with DIPNECH. I am 69 and probably have had this...

https://connect.mayoclinic.org/comment/1173598/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 14, 2024

I can't offer any advice but can empathize. Mine started in my small bowel in 2020...

https://connect.mayoclinic.org/comment/1171118/

Discussion: Experience w/ watch and wait approach for metastatic liver tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

I wish I had an answer for you, but I doubt that even your doctor can...

https://connect.mayoclinic.org/comment/867084/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2023

Hello! Welcome to the ' zebra club' :). I had somewhat complicated case , as had...

https://connect.mayoclinic.org/comment/1074310/

Discussion: newly diagnosed pNET on tail of pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2024

After my fourth injection of lanreotide every 28 days I have settled into my “new normal”...

https://connect.mayoclinic.org/comment/940526/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2023

Cobraman: Hi! I received diagnosis of small intestine (duodenum) NET tumor that had metastasized to liver...

https://connect.mayoclinic.org/comment/868984/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 30, 2023

A couple of immediate suggestions, as we have all fought this battle for NET's. There is...

https://connect.mayoclinic.org/comment/856394/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 8, 2023

Just checking in and saying hello before the support group meeting tomorrow. I am new to...

https://connect.mayoclinic.org/comment/713387/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 1, 2022