Neuroendocrine Tumors (NETs) Support Group

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Comment

Yes I did! My markers were increased even after my second treatment and my oncologist said...

https://connect.mayoclinic.org/comment/1534471/

Discussion: Started PRRT treatment: Anyone experience tumor markers increasing?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 4 days ago

Comment

Hi Teresa, Thanks for following up. I have surgery scheduled for October 21st to have the...

https://connect.mayoclinic.org/comment/636553/

Discussion: Possible NET with No Evidence of Tumor: Mediastinal Mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2021

Comment

@jasonrex86 I have not done RFA but I have had a hepatic artery embolization to treat...

https://connect.mayoclinic.org/comment/1527291/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15 9:08am

Comment

I did the Lanreotide injections for 3 months Then switched To Octreotide which I am currently...

https://connect.mayoclinic.org/comment/819293/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2023

Comment

Hi, interesting. What is a octreotide scan then? I read that it helps find them...well, I'll...

https://connect.mayoclinic.org/comment/1388191/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 6, 2025

Comment

My octreotide injections are scheduled every 28 days, and my next 3 are on the calendar.....

https://connect.mayoclinic.org/comment/901161/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2023

Comment

I have hair loss not sure if it is from PRRT treatment or the octreotide treatment...

https://connect.mayoclinic.org/comment/1389916/

Discussion: PRRT and hair loss

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 8, 2025

Comment

Yes, I would say your throat clearing is from DIPNECH. Octreotide fixed that for me. Yes,...

https://connect.mayoclinic.org/comment/1330274/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2025

Comment

@kdubbs Welcome to the DIPNECH family as it’s rare. I have both DIPNECH and lung NETs...

https://connect.mayoclinic.org/comment/1391732/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2025

Comment

Hi, who iz your oncologist? I see Dr. Diane Reidy-Lagunes and Lindsay Juste (at 53rd Street)...

https://connect.mayoclinic.org/comment/812159/

Discussion: Scared - Suspected NET on tail of the pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2023