Neuroendocrine Tumors (NETs) Support Group

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@hopeful33250 Thank you for the welcome. Really feels good to have a community to chat to...

https://connect.mayoclinic.org/comment/1499187/

Discussion: Stable metastatic NET – should I be pushing harder for PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6 6:36am

I just completed my last PRRT (Lutathera)treatment in May, I had a scan before my third...

https://connect.mayoclinic.org/comment/1324144/

Discussion: Advice for Preparations and Expectations on starting PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10, 2025

@Pavlina60: wondering how your pancreatic cancer is behaving after surgery. My latest MRI showed significant tumor...

https://connect.mayoclinic.org/comment/1109535/

Discussion: Facial and lip sores from lanreotide injections for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 21, 2024

Many factors to consider—grade of tumors, locations, whether well-differentiated or poorly differentiated. A close friend of...

https://connect.mayoclinic.org/comment/861020/

Discussion: Dying from car accident can cause death more so this cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

@vinnie694 Mine are similar to both, Small intestines with liver mets, stage 2, grade 4, Ki-67...

https://connect.mayoclinic.org/comment/1415454/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

Hello. Diagnosed almost 2 years ago. Had one year of uncontrollable diarrhea. Diagnosed with IBS at...

https://connect.mayoclinic.org/comment/952145/

Discussion: Is everyone with pNETs on creon?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2023

Lutathera infusion therapy was my choice. My NET tumors showed great response after 4 sessions (6mo)....

https://connect.mayoclinic.org/comment/1229015/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2025

Hope all are doing well! I did my 4th PRRT treatment on 10/9 This time when...

https://connect.mayoclinic.org/comment/1156203/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 13, 2024

I hope the PRRT has been working well for your wife. I'm part of a study...

https://connect.mayoclinic.org/comment/982588/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2023

Finally, I had my last PRRT (Lutathera) treatment done on 11/29/2023. After three day side effects...

https://connect.mayoclinic.org/comment/977585/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 9, 2023

Just went to the first oncologist appointment. After my doctor discussed with the hospital tumor board...

https://connect.mayoclinic.org/comment/812004/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2023

Tom: My wife is scheduled to begin PRRT on 3/9/2023 @ Fred Hutch - Seattle. The...

https://connect.mayoclinic.org/comment/808540/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2023

Hi. My son has well differentiated, grade 2 NETs. He is currently only receiving monthly Lanreotide...

https://connect.mayoclinic.org/comment/163153/

Discussion: How to get a second opinion for an international patient??

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2017

I am a grade 1, stage 4 and know exactly how you both feel. It’s the...

https://connect.mayoclinic.org/comment/1238295/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2025

Hello, all my fellow NET travelers. I saw Dr. Dasari at MD Anderson. He gave me...

https://connect.mayoclinic.org/comment/829631/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2023

My cancer is Stage IV, but I can't find anything about the staging of my tumor......

https://connect.mayoclinic.org/comment/812031/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2023

Hello @hollywood817 and welcome to the NETs discussion group on Mayo Connect. I see from your...

https://connect.mayoclinic.org/comment/804933/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2023

I see my NET oncologist tomorrow So far the NET team gave me a NET cardiologist...

https://connect.mayoclinic.org/comment/1109406/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 21, 2024

Hello. By the time he was diagnosed he had lost almost 40 lbs. He has only...

https://connect.mayoclinic.org/comment/955865/

Discussion: Is everyone with pNETs on creon?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 29, 2023

Hello, sorry to hear you are having such difficulty. I do not know who is rendering...

https://connect.mayoclinic.org/comment/802548/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2023

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