Neuroendocrine Tumors (NETs) Support Group

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Comments (2,370)

We are a year and half into our journey in living with NET. I can’t remember...

https://connect.mayoclinic.org/comment/932424/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 19, 2023

@fim I have a pancreatic neuroendocrine tumor with metastasis to the liver and bones. I do...

https://connect.mayoclinic.org/comment/1507936/

Discussion: Anyone have pancreatic neuroendocrine tumors with carcinoid syndrome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17 9:04am

I don't believe I have a team. Only symptoms are inconsistent bm's and some slight abdominal...

https://connect.mayoclinic.org/comment/1035653/

Discussion: Anyone have experience with "functioning" Pancreatic NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2024

@ahtaylor I would agree that you are blessed to be at Mayo and have such good...

https://connect.mayoclinic.org/comment/843301/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 14, 2023

Thank you. No, I’ve not had a PET scan. I had symptoms and a CT showed...

https://connect.mayoclinic.org/comment/1229014/

Discussion: Lanreotide Question: Why start before the next scan?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2025

They prefer to work on smaller-sized tumors and, although I had 5 done, that is unusual....

https://connect.mayoclinic.org/comment/1195166/

Discussion: I recently learned of histotripsy treatment for metastatic NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 22, 2024

My brother was on a clinical trial using cabozantinib and nivolumab. Unfortunately, he had a lot...

https://connect.mayoclinic.org/comment/877316/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2023

Did your husband have side effects from the everolimus? I’m starting that tomorrow after larenotide injections...

https://connect.mayoclinic.org/comment/1370917/

Discussion: Neuroendocrine tumor pancreatic tail

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 14, 2025

Welcome, @teresea. You may be interested interested in this related discussion: - Bland embolization or transarterial...

https://connect.mayoclinic.org/comment/982346/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 17, 2023

Good luck to you! I have Stage IV carcinoid originally in my ileum, and now in...

https://connect.mayoclinic.org/comment/1150045/

Discussion: Straight to the liver: Anyone have NETs originating in strange areas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2024

I have functioning gastrinomas the lanreotide helped my symptom control significantly and I started right after...

https://connect.mayoclinic.org/comment/1296743/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2025

Hello @willam, It has been a while since you last posted. How are you doing? Have...

https://connect.mayoclinic.org/comment/900512/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2023

The LACNET support group has a very interesting and supportive optimistic and helpful story the director...

https://connect.mayoclinic.org/comment/813998/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 19, 2023

@amongst That's great that you have a specialist, because treatment with an unknown primary adds an...

https://connect.mayoclinic.org/comment/1499461/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6 11:29am

Yes monthly Somatuline Depot until further notice. Quarterly MRI to track the 1.7cm NET in my...

https://connect.mayoclinic.org/comment/894429/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 12, 2023

My hematologist is the one who diagnosed my PNET due to extremely low platelet count. She...

https://connect.mayoclinic.org/comment/1049783/

Discussion: Anyone had a trend of their platelets going too low? What action?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2024

Yes. I had a Dotatate scan and the cancer has spread to my liver and 20...

https://connect.mayoclinic.org/comment/980712/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 14, 2023

Was diagnosed in March of this year. Origin in mesentary lining.Metastasized to liver, and elsewhere. I...

https://connect.mayoclinic.org/comment/774825/

Discussion: Pituitary and pNET: Can't do the things I love anymore

Support Group: Brain Tumor

Posted: Nov 18, 2022

Thank you Lindabees! Our emotions are all over the place right now. I hope there is...

https://connect.mayoclinic.org/comment/1206203/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2025

The first MR after 3-months on Afinitor 10 mg daily showed stability to slightly improved liver...

https://connect.mayoclinic.org/comment/182422/

Discussion: PRRT has been approved by the FDA Jan 26, 2018, as expected

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 1, 2018

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