Neuroendocrine Tumors (NETs) Support Group

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Comment

Shari, that's so great to hear that you are doing so well!!! Did you have genetic...

https://connect.mayoclinic.org/comment/244183/

Discussion: Paraganglioma / Carotid Body Tumor Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2019

Comment

@elgie17 I literally just did the 24 hour pee test. My husband took it in this...

https://connect.mayoclinic.org/comment/1232411/

Discussion: Just diagnosed Paraganglioma - how to treat side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 8 3:11pm

Comment

Hello @hunts1014 My original lesion was found during a routine upper endoscopy. My first two surgeries...

https://connect.mayoclinic.org/comment/1234763/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 11 7:19pm

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

@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

Comment

The pain in the left arm would probably be depending on how the surgery goes. I...

https://connect.mayoclinic.org/comment/1108182/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2024

Comment

My goodness, you’ve had the mother load when it comes to testing. I met the benchmark...

https://connect.mayoclinic.org/comment/1104138/

Discussion: What am I missing? Possible NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 12, 2024

Comment

Hi, thank you! Yes, I do intend to address all my side effect issues with the...

https://connect.mayoclinic.org/comment/1103497/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2024

Comment

Being the "healthiest sick guy he knows!" is quite the compliment! Congratulations on living well, in...

https://connect.mayoclinic.org/comment/1084151/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10, 2024

Comment

While I haven’t been diagnosed with DIPNECH I am 2 years into my treatment journey living...

https://connect.mayoclinic.org/comment/1070929/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

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