Neuroendocrine Tumors (NETs) Support Group

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Comments (932)

@helloitsme , Hi! I have pancreaticNET with liver metastases, I am on Lanreotide after surgery for...

https://connect.mayoclinic.org/comment/938587/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2023

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 have been on Lanreotide injections since March 2023. I have Stage 4 pNET with liver...

https://connect.mayoclinic.org/comment/899254/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

Hi I am writing this for my husband who has been diagnosed with neuro endocrine pancreatic...

https://connect.mayoclinic.org/comment/1324462/

Discussion: Lanreotide side effects: diarrhea constipation, what to do?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10, 2025

@laree - I have been in this journey for 2+ yrs. We also thought it was...

https://connect.mayoclinic.org/comment/1208982/

Discussion: Hello. I am new here. My husband was recently diagnosed with NETs.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 11, 2025

Good morning. I see Dr. Jason Starr at Mayo Jacksonville, Fl. In the last two years,...

https://connect.mayoclinic.org/comment/271257/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2019

On 4 July 2023 I was diagnosed with stage 4 pNET. I had a Whipple on...

https://connect.mayoclinic.org/comment/1345077/

Discussion: PRRT and lanreotide questions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 10, 2025

So optimistic about this treatment modality! I have two questions. Has this treatment been successful on...

https://connect.mayoclinic.org/comment/1192687/

Discussion: Has anyone out there tried Histotripsy for tumors in the liver?

Support Group: Liver Cancer

Posted: Dec 18, 2024

I'm am 56yrs old with liver NETs metastatic as well. Ki-67 is 4, well differentiated as...

https://connect.mayoclinic.org/comment/1167298/

Discussion: Dotatate lights only in liver, but report says metastatic to liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 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

@iverwig I had quite a bit of dizziness lightheadedness. I’m sure a few factors were cause...

https://connect.mayoclinic.org/comment/1492252/

Discussion: Anyone having severe dizziness or lightheadedness with NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28 12:24am

I have been on Lanreotide for 14 months after pNET with liver metastases. Right after surgery...

https://connect.mayoclinic.org/comment/1070331/

Discussion: pNET with liver metastases: What is necrosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 18, 2024

I get Lanreotide monthly at the University of Michigan they bill at 30,000 before I was...

https://connect.mayoclinic.org/comment/1454645/

Discussion: Cost of treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 6, 2025

Not sure about pain never really had any and have the same thing. I do have...

https://connect.mayoclinic.org/comment/927920/

Discussion: Anyone still have pancreas pain while taking Lanteotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2023

My experience is similar to Caitlin’s, I’ve had 3 treatments at Mayo with the 4th in...

https://connect.mayoclinic.org/comment/806802/

Discussion: Recurrence with Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5, 2023

Yes. I was on immunotherapy for almost a year and my last pet scan showed only...

https://connect.mayoclinic.org/comment/1215480/

Discussion: I have 3 neuroendocrine tumors in left lung: Can I handle radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 18, 2025

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

Did you do bland embolization? Did you try Lanreotide? I heard that there is a clinical...

https://connect.mayoclinic.org/comment/1037516/

Discussion: Treatment for GI NET with liver mets not working: Options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2024

Hello, Michelle! Good luck on your scans! I am approaching my surgery's first anniversary. Have been...

https://connect.mayoclinic.org/comment/1005058/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2024

Same here - PNET grade 2, Stage 4. Had surgery for removal of pancreatic tail, spleen,...

https://connect.mayoclinic.org/comment/922881/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2023