Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

Hello again @phoebeghostwriter Here is a link that will direct you to other tests that can...

https://connect.mayoclinic.org/comment/670209/

Discussion: Do NET tumors show up in basic blood work?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12, 2022

I don’t mind you asking at all :). The allergy desensitization involved an admission to ICU...

https://connect.mayoclinic.org/comment/839294/

Discussion: Ways to control hypoglycemia caused by insulinoma in pancreas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 7, 2023

Welcome Lenora, I'm so glad that you posted about your NETs story after following the discussions...

https://connect.mayoclinic.org/comment/668647/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2022

I coughed constantly for 30 years due to lung NETs and DIPNECH but octreotide injections for...

https://connect.mayoclinic.org/comment/1067737/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 14, 2024

@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

Good point about Octreotide, I would definitely be asking the Dr. I made it almost 2...

https://connect.mayoclinic.org/comment/1274338/

Discussion: Tumor growth in three month follow up MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2025

Wow! To all in this discussion. My husband is due to have his first liver debulking...

https://connect.mayoclinic.org/comment/771459/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2022

As if monthly shots aren’t enough to deal with, checking my last statement I noticed I...

https://connect.mayoclinic.org/comment/1489674/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23 6:52pm

There are different kinds of pet scans. There is one that is specific for nets called...

https://connect.mayoclinic.org/comment/1388706/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 7, 2025

That's great news! Thanks for updating us. I know you indicated that she has an oncologist...

https://connect.mayoclinic.org/comment/1360503/

Discussion: (Spouse)Supports Stage 2

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 31, 2025

My husband does the Lanreotide 120 every 28 days. Medicare B covers 100%. He then did...

https://connect.mayoclinic.org/comment/1134950/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2024

My husband took Octreotide shots for about 18 months, side effects slightly looser stools & then...

https://connect.mayoclinic.org/comment/1269466/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2025

My husband has had the insulinoma metastasized to liver since 2022. He also couldn’t do the...

https://connect.mayoclinic.org/comment/1144312/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2024

They tried the diazoxide on my husband but he had a bad reaction so ended up...

https://connect.mayoclinic.org/comment/934692/

Discussion: Ways to control hypoglycemia caused by insulinoma in pancreas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 23, 2023

@jasonrex86 I have not done RFA but I have had a hepatic artery embolization to treat...

https://connect.mayoclinic.org/comment/1527291/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15 9:08am

Just following up. I had the calcium stimulation test on Tuesday. The liver was positive for...

https://connect.mayoclinic.org/comment/843297/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 14, 2023

@aprils1957 So you are now with Dr. Pommier? I'm a bit confused. Is Dr. Pregna an...

https://connect.mayoclinic.org/comment/1541292/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2 2:08pm

@nannybb I just wanted to share my experience with the Octreotide injections. I have been getting...

https://connect.mayoclinic.org/comment/1540260/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1 9:26am

The fact that things are stable is excellent! Frankly since there is no evidence of disease...

https://connect.mayoclinic.org/comment/1498538/

Discussion: Stable metastatic NET – should I be pushing harder for PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 8:33am

Yes I did! My markers were increased even after my second treatment and my oncologist said...

https://connect.mayoclinic.org/comment/1534471/

Discussion: Started PRRT treatment: Anyone experience tumor markers increasing?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24 2:19pm

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