Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

Hi @pattirushing, octreotide and microwave ablation are the only two treatments I've had for my typical...

https://connect.mayoclinic.org/comment/845209/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

He had his first 6 days ago. Has had some stomach upset on and off and...

https://connect.mayoclinic.org/comment/991577/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2024

My primary NET tumor was surgically removed from the mesentery along with 15 lymph nodes (9...

https://connect.mayoclinic.org/comment/1480992/

Discussion: Anyone had radiation for carcoinoid in Mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12 10:39pm

I have just been diagnosed with NET tumors in my abdomen and am starting with MRI's,...

https://connect.mayoclinic.org/comment/1454524/

Discussion: Cost of treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 6, 2025

I had surgery for the very same thing n 2022. Dr removed the obstruction & 1...

https://connect.mayoclinic.org/comment/1350314/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2025

I was diagnosed with stage 4 NET’s December 2022, started in small intestines and metastasized to...

https://connect.mayoclinic.org/comment/901156/

Discussion: Should I want more treatment after pancreatic nets with lymph nodes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2023

I get octreotide injections along with exgeva monthly and yes, I’m pretty wiped out for about...

https://connect.mayoclinic.org/comment/1111700/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2024

I’ve been taking octreotide injections for DIPNECH and lung NETs for 4 years. No GI issues...

https://connect.mayoclinic.org/comment/1199060/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2024

@mdmarquardt the octreotide really took my appetite away the first year or so. I'm still not...

https://connect.mayoclinic.org/comment/937832/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 28, 2023

16 Tumors were discovered on my liver December 2022. Started on Lanreotide for 3 months, switched...

https://connect.mayoclinic.org/comment/1111382/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2024

@splendrous, my oncologist is located at the Springfield Clinic Cancer Center. My oncology surgeon is located...

https://connect.mayoclinic.org/comment/1275161/

Discussion: Tumor growth in three month follow up MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2025

I’ve been on octreotide injections for 5 months now I receive 2 shots monthly. The first...

https://connect.mayoclinic.org/comment/919654/

Discussion: Pain post Octreotide injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 27, 2023

Hi @nana120 I believe your hair loss will stabilize. My hair has really thinned due to...

https://connect.mayoclinic.org/comment/1008942/

Discussion: Anyone have hair loss with lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3, 2024

My primary was a tumor wrapped around my small intestine, discovered in 2007. I have been...

https://connect.mayoclinic.org/comment/898391/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

Was diagnosed with stage IV with primary in Duednum and 4 tumors in liver. Been on...

https://connect.mayoclinic.org/comment/1365332/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 6, 2025

It is so good to hear from you, @sophiarose. I'm glad to hear of the success...

https://connect.mayoclinic.org/comment/1312870/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2025

I was diagnosed with atypical carcinoid neuroendicrine tumors in March of 2022. I underwent surgery to...

https://connect.mayoclinic.org/comment/793653/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2023

Hi @ahtaylor -- I love your motto! I have always loved the "Never Give Up" poster...

https://connect.mayoclinic.org/comment/867775/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2023

Hi, My husband experiences the same symptoms after his Octreotide injection. Bad diaree, fatigue, fevers, vomiting,...

https://connect.mayoclinic.org/comment/848947/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2023

He Is fine with the Octreotide. He has been on it since June 2022. We have...

https://connect.mayoclinic.org/comment/831928/

Discussion: Neuroendocrine Insulinoma: Is treatment different for this type?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

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