Neuroendocrine Tumors (NETs) Support Group

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Hello @fae and welcome to Mayo Connect. I'm glad that you have connected with some of...

https://connect.mayoclinic.org/comment/827197/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 16, 2023

Thank you so much for your reply. I had an appointment yesterday, and they are planning...

https://connect.mayoclinic.org/comment/843319/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 14, 2023

Just to add on CAP/TEM, it in conjunction with Lanreotide injections, helped my wife reduce her...

https://connect.mayoclinic.org/comment/839791/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 8, 2023

I, too, have NET (Ileum), along with several METS. I have been going to Mayo since...

https://connect.mayoclinic.org/comment/134671/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2018

Here is an article that I thought you might interesting, about a youngster with NETs who...

https://connect.mayoclinic.org/comment/134557/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2021

I’m new to this world of Oncology as well. My dx NET tumor with metastasized to...

https://connect.mayoclinic.org/comment/774811/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 18, 2022

@lully2505 , how might we help guide you through tour upcoming surgery. My wife had a...

https://connect.mayoclinic.org/comment/938747/

Discussion: Found PNET on tail of pancreas but told it’s nonfunctional

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2023

Hello @avawein You posted about finding some"hotspots" on your liver after having a CU64 dotatate. I...

https://connect.mayoclinic.org/comment/636362/

Discussion: Possible NET with No Evidence of Tumor: Mediastinal Mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2021

I had NET on the head of my pancreas so the surgery is different from yours....

https://connect.mayoclinic.org/comment/793161/

Discussion: Scared - Suspected NET on tail of the pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2023

Is there a pet scan That cat scan the body to see if there are any...

https://connect.mayoclinic.org/comment/1022418/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25 1:46pm

After my whipple procedure Mar 2020 my Chromogranin A and Serotonin levels remained higher than normal,...

https://connect.mayoclinic.org/comment/967519/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2023

I have been diagnosed with pNET in December 2022. Grade 3 (Ki=18) with liver metastases (Stage4)....

https://connect.mayoclinic.org/comment/1035345/

Discussion: Anyone have experience with "functioning" Pancreatic NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17 4:24pm

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

Welcome @sueannsellers. I'm glad to hear that you are being referred to Mayo Clinic for consultation...

https://connect.mayoclinic.org/comment/806557/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5, 2023

@lastround your diagnosis seems so similar to my dads story in the sense of areas affected...

https://connect.mayoclinic.org/comment/834179/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2023

I also have tumor metastases on my spine and ribs, unknown primary. Diagnosed Jan 2020, multiple...

https://connect.mayoclinic.org/comment/810800/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

Hi mbg20, My husband has recently had a small bowel resection on Feb 27. He originally...

https://connect.mayoclinic.org/comment/830442/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2023

My problem at first was low sugar levels, as the tumors on my liver got bigger...

https://connect.mayoclinic.org/comment/868557/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 29, 2023

Thank you! I'm actually doing good with the octreotide( bi-weekly shots) and hopefully scheduled scans in...

https://connect.mayoclinic.org/comment/1000147/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19 1:25pm

Hello @kate777 I'd like to join @colleenyoung and @char1962, in welcoming you to Connect. I've had...

https://connect.mayoclinic.org/comment/777407/

Discussion: Merkel cell-radiation effective on chest-new 2 cm spot on liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 25, 2022

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