Neuroendocrine Tumors (NETs) Support Group

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Comment

I took immunotherapy I was diagnosed in June of 23 with Merkel cell carcinoma it was...

https://connect.mayoclinic.org/comment/1172429/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: 6 days ago

Comment

To jls77 It sounds like you're wanting to know about people's experiences w paragangliomas. In April...

https://connect.mayoclinic.org/comment/1164658/

Discussion: Paraganglioma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 29 11:49am

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 4:21pm

Comment

I just found out I have a second and maybe third paraganglioma, carotid body tumor, this...

https://connect.mayoclinic.org/comment/1163726/

Discussion: Paraganglioma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 27 8:04pm

Comment

Hello @wilhelm and welcome to Mayo Connect. I appreciate your thoughtful comments about this rare disorder...

https://connect.mayoclinic.org/comment/1165843/

Discussion: Paraganglioma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31 1:55pm

Comment

@wilhelm I strongly agree w Teresa, Volunteer Mentor. When my NET on my carotid artery was...

https://connect.mayoclinic.org/comment/1166076/

Discussion: Paraganglioma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1 8:11am

Comment

Yes, they want to do a needle biopsy. They say there slow growing so they want...

https://connect.mayoclinic.org/comment/1169811/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7 9:59pm

Comment

Hello All .My name is Ladonna I live in Az now so went to seed Doctor...

https://connect.mayoclinic.org/comment/1173048/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: 5 days ago

Comment

I appreciate your kind remarks, @pamela1685. So many of on Connect have experienced a myriad of...

https://connect.mayoclinic.org/comment/1173905/

Discussion: How many doctors did you see to get to your NETS diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 3 days ago

Comment

Dear puddknocker, I had a big para in the skull base in the vagus nerve, I...

https://connect.mayoclinic.org/comment/856706/

Discussion: Paraganglioma / Carotid Body Tumor Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 8, 2023

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