Neuroendocrine Tumors (NETs) Support Group

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I have been on sandostatin since sept 2014. After extensive surgery to remove carcinoids on large...

https://connect.mayoclinic.org/comment/137527/

Discussion: My Husband was newly diagnosed with Carcinoid Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2017

@tufan HI Tufan, I'm sorry to hear that. I hope soon you start getting good treatment...

https://connect.mayoclinic.org/comment/803389/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2023

@sophiarose, I had to stop taking octreotide due to an anaphylactic reaction. Due to significant issues...

https://connect.mayoclinic.org/comment/830375/

Discussion: Stopping Octreotide???

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2023

Welcome to one of the world's crappiest clubs. I'm in exactly your spot. Many elevated endocrine...

https://connect.mayoclinic.org/comment/884116/

Discussion: Feeling discouraged and too many specialists

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2023

@bnjncrew I was diagnosed with pNET with metastasis to the liver on 8/22/2022. I have completed...

https://connect.mayoclinic.org/comment/883888/

Discussion: Looking for information on CAPTEM treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2023

Hello all! New to the group. Diagnosed with PNET that have metastasized to liver, bone, lung....

https://connect.mayoclinic.org/comment/890587/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 5, 2023

I had my pancreatic cancer surgery in Mar 2020 and 5 months ago my scan showed...

https://connect.mayoclinic.org/comment/937482/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 27, 2023

Hello! I have been there :). My pNet was discovered incidentally during a stroke work-up. Along...

https://connect.mayoclinic.org/comment/1061285/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3 8:30am

Hello fellow NET people. I am posting this as an update to my journey. After 9...

https://connect.mayoclinic.org/comment/1120051/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 8 11:07am

When I was diagnosed 10 years ago, there was little information to be found on NET....

https://connect.mayoclinic.org/comment/193066/

Discussion: NETs Becomes Newsworthy

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 19, 2018

Hi @taneall I am in the same boat as your husband...grade 1, stage 4. It is...

https://connect.mayoclinic.org/comment/892998/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9, 2023

Hi. Sorry it took me so long to reply. I traveled on Saturday to a NET...

https://connect.mayoclinic.org/comment/163157/

Discussion: How to get a second opinion for an international patient??

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 15, 2017

Hi Joan So you are one of the 75-80 families they have in the study. I...

https://connect.mayoclinic.org/comment/163587/

Discussion: NIH clinical study looking for the gene causing carcinoid cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 12, 2017

I have the same cancer as you. I have been on lanreotide almost a year. So...

https://connect.mayoclinic.org/comment/1106183/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15 4:56pm

Hi! I just came out of the hospital yesterday. Had extensive distal pancreatectomy, spleen and gall...

https://connect.mayoclinic.org/comment/808230/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 8, 2023

My wife @kim1965 was diagnosed with NET on tail of pancreas and numerous tumors on liver...

https://connect.mayoclinic.org/comment/802307/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2023

I was diagnosed in 2002 and mine was already metastasized to liver and lymph nodes. I...

https://connect.mayoclinic.org/comment/101985/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 11, 2016

Hi I was diagnosed with a malignant insulinoma last July. The tumor originated in my pancreas...

https://connect.mayoclinic.org/comment/901833/

Discussion: Anyone with an insulinoma have only therapies instead of surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2023

Hello carm1011! I have the same diagnosis - pNET well functioning, Grade 2, Stage 4 with...

https://connect.mayoclinic.org/comment/891762/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 7, 2023

Exactly. Neck to pelvis. I have had kidneys and liver issues for a while. Out of...

https://connect.mayoclinic.org/comment/893469/

Discussion: SDHB Positive and Ga-68 Dotatate Scan question.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 10, 2023

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