Neuroendocrine Tumors (NETs) Support Group

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I am awaiting consultation with doctors at Cleveland Clinic. Medicare does pay because it is FDA...

https://connect.mayoclinic.org/comment/1180658/

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

Support Group: Liver Cancer

Posted: Nov 27, 2024

I just had scans on Monday. Everything is stable, and they even noted some shrinkage in...

https://connect.mayoclinic.org/comment/1123512/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 14, 2024

How did your embolization go? I have grade 2 metastatic to the liver with no known...

https://connect.mayoclinic.org/comment/1364518/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2025

I am having the once per month injection of Octreotide (sp?). The drug has calmed my...

https://connect.mayoclinic.org/comment/1349207/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2025

When my cancer was found, and they removed the tumor in my ileum, this is what...

https://connect.mayoclinic.org/comment/1285797/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2025

I think foods high in "amines" can trigger carcinoid syndrome or similar effects. I have a...

https://connect.mayoclinic.org/comment/1231773/

Discussion: How does Alcohol use affect Liver NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7, 2025

I am in Australia and waiting to see what the next step for me (lesion liver)...

https://connect.mayoclinic.org/comment/1089295/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2024

I totally agree with what you are saying! My liver enzymes (ALT, AST) are almost double...

https://connect.mayoclinic.org/comment/1009304/

Discussion: Anyone have hair loss with lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2024

I had surgery in 2018 for t-10 lesion but since have had cyberknife on additional spine...

https://connect.mayoclinic.org/comment/952169/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2023

I go to the Mayo Clinic 2-4 times a year for followup. I also have carcinoid...

https://connect.mayoclinic.org/comment/85558/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2016

I have multiple liver lessions too that have different characteristics, I’m not comfortable about it especially...

https://connect.mayoclinic.org/comment/829662/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2023

i appreciate your sharing. Were your tumors growing and that is why they gave you 4...

https://connect.mayoclinic.org/comment/1344045/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 8, 2025

tks for yr reply my husband is treated since 2020 with Octeotride injection, once a month...

https://connect.mayoclinic.org/comment/1317332/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 31, 2025

How well are you doing on the Cap/Tem? Her oncologist said that it will make her...

https://connect.mayoclinic.org/comment/880790/

Discussion: My Sister and Best Friend

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2023

Thank you. I'm so new to this. Saw oncologist for first time this afternoon. They're sending...

https://connect.mayoclinic.org/comment/796316/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 13, 2023

Not sure where your primary is. Mine is located in Duedenum and metastasis to liver, lymph...

https://connect.mayoclinic.org/comment/1453505/

Discussion: What is the best treatment for carcinoid tumor in mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 5, 2025

There's a good chance of you having both treatments when all is said and done. For...

https://connect.mayoclinic.org/comment/1380088/

Discussion: Questions for surgeon-considerations choosing PRRT or surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2025

You're very welcome. Like liver transplantation nets, especially high grade NEC really requires a specialist. If...

https://connect.mayoclinic.org/comment/1328792/

Discussion: Liver transplant and Neuroendocrine Carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2025

Hi all, I’m new to this forum and this condition. Started with GI pain and inconsistent...

https://connect.mayoclinic.org/comment/876745/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 11, 2023

I had both sides of my liver done I found eating small meals multiple times a...

https://connect.mayoclinic.org/comment/977500/

Discussion: After liver embolization: Looking for the best diet + food suggestions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 9, 2023