Neuroendocrine Tumors (NETs) Support Group

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Comment

I was diagnosed in April 2002 and have had monthly Sandostatin injections starting in 2008 and...

https://connect.mayoclinic.org/comment/90133/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2016

Comment

My Journey of what I have done Liver resection Lanreotide Octreotide Liver embolizations both sides Afinitor...

https://connect.mayoclinic.org/comment/1328140/

Discussion: First scan after 3 months of lanreotidec

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2025

Comment

My husband started with emboliztion but I have read that PRRT is being considered as a...

https://connect.mayoclinic.org/comment/1087600/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2024

Comment

Hello @sophiarose I appreciate your reply to @dbmenger about your difficulties with Lanreotide and Octreotide. It...

https://connect.mayoclinic.org/comment/1249618/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2025

Comment

Lots of variety for you. Interesting (and good) that all your nodules are in one lung....

https://connect.mayoclinic.org/comment/1229577/

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2025

Comment

Hi @pattirushing It's a little bit hard for me to single out all the octreotide side...

https://connect.mayoclinic.org/comment/838730/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2023

Comment

Great! It sounds like you've been doing your research. Please keep us posted. I'd love to...

https://connect.mayoclinic.org/comment/838724/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2023

Comment

@markmark007 Thank you for your prompt reply. Wonder if PRRT is the first treatment option prescribed...

https://connect.mayoclinic.org/comment/968905/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2023

Comment

@siluka Thank you this update too. I am going to go over everything again after the...

https://connect.mayoclinic.org/comment/1433166/

Discussion: S4, G2 NETS in mesentery. Declined Exploratory Surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2025

Comment

@cmc188 I don't blame you for not wanting side effects without any benefit. I have had...

https://connect.mayoclinic.org/comment/1206123/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2025

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