Neuroendocrine Tumors (NETs) Support Group

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Hi @grec I shared my details earlier in the thread if you want to scroll back....

https://connect.mayoclinic.org/comment/1048486/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

Comment

Sorry to hear of all your challenges. It's difficult when they are coming from all directions....

https://connect.mayoclinic.org/comment/1228165/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2 11:55pm

Comment

Welcome to the group. I have had success controlling my blood sugar with Octreotide (Sandostatin LAR...

https://connect.mayoclinic.org/comment/1180040/

Discussion: Neuroendocrine insulinoma and MDS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 26, 2024

Comment

Yes, absolutely seek out a multidisciplinary NETS team. I see one at UCLA and they work...

https://connect.mayoclinic.org/comment/861475/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Comment

Hello @sophiarose Personally, I have never taken either octreotide or lanreotide so I do not know...

https://connect.mayoclinic.org/comment/727713/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2022

Comment

I have been on Octreotide shots for several years and also took Afinitor for a couple...

https://connect.mayoclinic.org/comment/710265/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2022

Comment

Hi @mimi206 I have DIPNECH and lung NETs (typical carcinoids) with 50+ nodules so we are...

https://connect.mayoclinic.org/comment/1250591/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4 7:24pm

Comment

Hi,Sorry to hear about your diagnosis. One thing doctors and research haveshown is that most neuroendicrine...

https://connect.mayoclinic.org/comment/90131/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2016

Comment

@gig666 How did your PET scan turn out? Was it a DOTATATE scan specifically for NETs?...

https://connect.mayoclinic.org/comment/1033637/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2024

Comment

Do get a second opinion but be sure they are a NET specialist. My husband was...

https://connect.mayoclinic.org/comment/996445/

Discussion: PNET on tail of pancreas with numerous bilobar hepatic metastases

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 13, 2024

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