Neuroendocrine Tumors (NETs) Support Group

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Comments (689)

I had PRRT for metastatic tumors in my liver. The plan is no treatment until they...

https://connect.mayoclinic.org/comment/1060197/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2024

I second dbamos1945 comment on PRRT, the doctors will tell you that the true results won't...

https://connect.mayoclinic.org/comment/1149811/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 30, 2024

@zacharycat I can’t remember if I have already stated but we hope to start PRRT treatments...

https://connect.mayoclinic.org/comment/1529932/

Discussion: Liver NETs: Anyone has extreme swelling in feet and ankles?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18 12:56pm

Hi @gapsc, these are good questions to ask your oncologist regarding the COVID vaccine and its...

https://connect.mayoclinic.org/comment/257061/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 17, 2021

We have been told that PRRT is effective. My husband had high uptake on positive receptors....

https://connect.mayoclinic.org/comment/1003830/

Discussion: NET in illeum, surgery or proper nutrition?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2024

Update: on to PRRT …

https://connect.mayoclinic.org/comment/1328564/

Discussion: Help understand interval progression

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2025

Treatment with prrt or octreotide

https://connect.mayoclinic.org/comment/90130/

Discussion: I have recently been diagnosed with my third neuroendocrine tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2016

@kurtjazzy01 I had 6 rounds of PRRT and didn't have any pain. It does require 2...

https://connect.mayoclinic.org/comment/1406540/

Discussion: PRRT Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2025

All the very best wishes for the 27th I did PRRT and I am stable for...

https://connect.mayoclinic.org/comment/1537213/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 28 10:41am

Teresa- Was responding to Alpha PRRT with Ac-225 in GEP-NETs, seeking " patients with inoperable, advanced,...

https://connect.mayoclinic.org/comment/1346475/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 12, 2025

@harley4650, I encourage you to read and ask questions in this related discussion as you consider...

https://connect.mayoclinic.org/comment/752040/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2022

Is PRRT available at the Mayo Clinic?

https://connect.mayoclinic.org/comment/182416/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 6, 2018

@djchambers I had both folfox and PRRT. Pretty good response to both but PRRT is much...

https://connect.mayoclinic.org/comment/1510426/

Discussion: NETs growing despite 3 months of capecitabine and temozolomide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20 11:21am

Have they suggested prrt therapy?

https://connect.mayoclinic.org/comment/887440/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 29, 2023

My brother had PRRT after having surgery and Octreotide injections every 28 days. The tumor growth...

https://connect.mayoclinic.org/comment/877313/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2023

Hello @susan481, On Connect, we have numerous discussions from members who have had treatment with PRRT....

https://connect.mayoclinic.org/comment/1328871/

Discussion: PRRT and Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

@tjstaufr, have you been able to get your next PRRT treatment? How are you doing?

https://connect.mayoclinic.org/comment/1490548/

Discussion: Canceled PRRT Treatments

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25 5:41pm

@kjstein @zacharycat The Neuroendocrene Cancer Foundation has trial information on their website. For example, I just...

https://connect.mayoclinic.org/comment/1538659/

Discussion: Is anyone taking cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30 10:08am

Everolimus and a Clinical Trial for Alpha PRRT.

https://connect.mayoclinic.org/comment/1389578/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 8, 2025

I see that you had PRRT in 2020 and it’s been stable since. I will have...

https://connect.mayoclinic.org/comment/811900/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2023

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