Neuroendocrine Tumors (NETs) Support Group

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Comment

I coughed constantly for 30 years due to lung NETs and DIPNECH but octreotide injections for...

https://connect.mayoclinic.org/comment/1067737/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 14, 2024

Comment

Hi, I'm 67 years old. Have been mis-diagnosed for over 5 years. 2023 Dr. finally walks...

https://connect.mayoclinic.org/comment/1054374/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2024

Comment

I have also been diagnosed with DIPNECH and have probably had for 20 years. I have...

https://connect.mayoclinic.org/comment/1172007/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

Comment

@jhhaas Glad the surgery is behind you. Yes, you should have a NETs multidisciplinary team at...

https://connect.mayoclinic.org/comment/976633/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2023

Comment

@meryls12, you may wish to consult with the leading NETs team at Mayo Clinic in Jacksonville...

https://connect.mayoclinic.org/comment/968224/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2023

Comment

DIPNECH and lung NETs typically do have somatostatin receptors which is why I had the DOTATATE...

https://connect.mayoclinic.org/comment/1361481/

Discussion: Recently diagnosed with a NET in my middle lobe of my right lung.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 1 12:33pm

Comment

@mlbschuler Great news that you were happy with your visit with Dr. Ramirez and he is...

https://connect.mayoclinic.org/comment/1024996/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 29, 2024

Comment

Hi @dipnech67 I would be happy to speak with you. I just sent you a private...

https://connect.mayoclinic.org/comment/1055386/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2024

Comment

Thanks for the update. I do not have those mutations so we may have different types...

https://connect.mayoclinic.org/comment/1226513/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31 7:20pm

Comment

@jhhaas Good idea to get a second opinion. Glad you don’t have coughing. Octreotide also helps...

https://connect.mayoclinic.org/comment/1143685/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2024

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