Neuroendocrine Tumors (NETs) Support Group

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Hello All: For those of you who have had surgery for NETs in the thoracic area...

https://connect.mayoclinic.org/comment/631580/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 31, 2021

Comment

I’ve been taking octreotide injections for DIPNECH and lung NETs for 4 years. No GI issues...

https://connect.mayoclinic.org/comment/1199060/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2024

Comment

I hope that you had diagnosed i had the same symptoms of cushing with normal pitutary...

https://connect.mayoclinic.org/comment/884022/

Discussion: Feeling discouraged and too many specialists

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2023

Comment

Thank you for your response and treatment info. It seems a good thing that you have...

https://connect.mayoclinic.org/comment/814505/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2023

Comment

Hi @marciamiller I also have DIPNECH and lung NETS (cancer). I’m guessing you saw Dr. Ramirez....

https://connect.mayoclinic.org/comment/1162740/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2024

Comment

@gprior Have you tried octreotide injections for respiratory symptoms? It has been life changing for me....

https://connect.mayoclinic.org/comment/1142710/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

Comment

Hi there- I initially had pancreatitis. Because of that, my physician ordered a variety of lab...

https://connect.mayoclinic.org/comment/805673/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3, 2023

Comment

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

Comment

I'm exactly your age and my situation appears to be exactly like yours. But my journey...

https://connect.mayoclinic.org/comment/941331/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2023

Comment

Hi GAP, Last May 2022 I had a lung NET removed with the right upper lobe...

https://connect.mayoclinic.org/comment/802258/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2023

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