Neuroendocrine Tumors (NETs) Support Group

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Comments (689)

@tomrennie I am so sorry for my delayed response - For clarification: Latest PET / Ga-68...

https://connect.mayoclinic.org/comment/1441118/

Discussion: NET's Metastasis to Brain

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2025

@gsm13161, Hope the cyberknife operation has kept your condition stable. With mets to spine, were you...

https://connect.mayoclinic.org/comment/947492/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2023

Thanks for the feedback firepower. I also have grade 3 Ki67 of 42 and am looking...

https://connect.mayoclinic.org/comment/828496/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19, 2023

@stevestenberg31 he did last week! Unfortunately not enough uptake of the tracer so PRRT is not...

https://connect.mayoclinic.org/comment/824943/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

I was dx in may with net in small intestine tumor was removed but pep scan...

https://connect.mayoclinic.org/comment/758557/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2022

Update for folks who have been so helpful - doctor appointment hard but useful. Lanreotide alone...

https://connect.mayoclinic.org/comment/1328851/

Discussion: Help understand interval progression

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

Hi My husband has a similar situation. He was diagnosed last March with a grade 1,...

https://connect.mayoclinic.org/comment/1216829/

Discussion: I am one year out with my diagnosis just finished 4th round of PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2025

Welcome to Mayo Connect, @glenkinman68 I am glad that you have joined our NETs discussion group....

https://connect.mayoclinic.org/comment/134547/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 21, 2019

@blee123: As you are aware, NET patients do not react the same to treatments; but my...

https://connect.mayoclinic.org/comment/1384449/

Discussion: Questions for surgeon-considerations choosing PRRT or surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 1, 2025

I have had no surgery. Surgeon offered radical stomach, gallbladder, spleen, much intestine reduction - I...

https://connect.mayoclinic.org/comment/1216991/

Discussion: MRI or CatScan as follow up imaging for metastatic liver tumor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2025

Thanks dbamos, you are more than welcome. I was thrilled when they stopped the trial because...

https://connect.mayoclinic.org/comment/1419188/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 19, 2025

Just adding a little update on my experience with PRRT to Mark's response. I completed my...

https://connect.mayoclinic.org/comment/969057/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2023

Hello stevesrenberg31, I have been taking octreotide for 8mo. It feels like it works intermittently as...

https://connect.mayoclinic.org/comment/1023345/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2024

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

@colleenyoung I wanted to give an update on my CT scan after 2 PRRT infusions. Three...

https://connect.mayoclinic.org/comment/819167/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2023

I only took Afinitor for 9 weeks it gave me a major BP and pulse issue...

https://connect.mayoclinic.org/comment/1313487/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2025

I have not heard where PRRTwas your first course of treatment, then CAP/TEM. Of course we...

https://connect.mayoclinic.org/comment/1190917/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2024

Ask your team of doctors if CAP/TEM chemo pill is an option for NET. My wife...

https://connect.mayoclinic.org/comment/1035319/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2024

The same thing happened to me: I’ve been on these shots for 13 months already but...

https://connect.mayoclinic.org/comment/1288910/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2025

The oncologist feels that the Zometa will strengthen the areas in my spine and pelvis. One...

https://connect.mayoclinic.org/comment/1143611/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2024

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