Neuroendocrine Tumors (NETs) Support Group

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Comments (298)

Hello @snd. I am sorry you are feeling scared and totally understand feeling like you are...

https://connect.mayoclinic.org/comment/803545/

Discussion: Recently diagnosed with PNET Grade2

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2023

How successful has the surgery been to remove PNETS? What is the criteria for PNET enucleation?...

https://connect.mayoclinic.org/comment/1024930/

Discussion: Is enucleation appropriate for me?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 29, 2024

I have a Pnet. Sorry that I don’t have advice but rather a question. Why a...

https://connect.mayoclinic.org/comment/914924/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 18, 2023

Thank you for this information, I also have stage 4 pNET. My nausea is not controlled...

https://connect.mayoclinic.org/comment/1215430/

Discussion: Olanzapine (Zyprexa) 5mg for nausea: Did it work for you?

Support Group: Cancer: Managing Symptoms

Posted: Jan 18 8:16am

Hello. My wife is a PNET patient at Mayo Rochester - I am her caregiver /...

https://connect.mayoclinic.org/comment/679282/

Discussion: What’s next: Seeking advice on how to navigate diagnosis appointments?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10, 2022

Were any of your scans a Ga-68 Dotatate PET scan? That is what my oncologist uses...

https://connect.mayoclinic.org/comment/1340867/

Discussion: 1/2 Pancreas, 1 lymph node involved. What treatment would be likely?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 4 9:12am

You have been through so much. You must be a strong person. I really appreciate that...

https://connect.mayoclinic.org/comment/859017/

Discussion: Just diagnosed with PNET: Any thoughts on watch & wait approach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 12, 2023

The staging system most often used for pNETs is the American Joint Committee on Cancer (AJCC)...

https://connect.mayoclinic.org/comment/1364437/

Discussion: What is staging for pancreatic NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5 3:42pm

In 2019 a 6mm PNET was found on the head of my pancreas. In October of...

https://connect.mayoclinic.org/comment/1397878/

Discussion: New pNET so scared

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 21 9:32am

Look into Enucleation of PNET. Not eye surgery! It is a procedure to remove the NET...

https://connect.mayoclinic.org/comment/1024925/

Discussion: Is enucleation appropriate for me?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 29, 2024

Hi, PNet is one that starts in the pancreas then spreads to other parts like the...

https://connect.mayoclinic.org/comment/1071577/

Discussion: pNET with liver metastases: What is necrosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 20, 2024

I am 14 mo post PNET, 1 yr after surgery. Stage 4 NELM. I , too,...

https://connect.mayoclinic.org/comment/1012363/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2024

I too have pNET grade 2, stage 4 due to liver metastases, but have not heard...

https://connect.mayoclinic.org/comment/1062830/

Discussion: pNET with liver metastases: What is necrosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 5, 2024

Hello @bellom, I see that you are monitoring a PNET on a regular basis. How are...

https://connect.mayoclinic.org/comment/1027532/

Discussion: Is enucleation appropriate for me?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4, 2024

Hello @fabiant, I am glad to hear that you are being seen by NET specialists at...

https://connect.mayoclinic.org/comment/880527/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2023

I had two strokes before being diagnosed with pNET. Turned out I also have antiphospholipid syndrom....

https://connect.mayoclinic.org/comment/1328873/

Discussion: Blood Clots, DVT and Neuroendocrine Cancer - Be aware.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17 6:40am

I have been on Lanreotide for 14 months after pNET with liver metastases. Right after surgery...

https://connect.mayoclinic.org/comment/1070331/

Discussion: pNET with liver metastases: What is necrosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 18, 2024

Hi Charlie, to help you connect easily with others like you, I moved your message about...

https://connect.mayoclinic.org/comment/931530/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2023

My husband is on that same regimen. He was on captem for 14 cycles and cap...

https://connect.mayoclinic.org/comment/1123228/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2024

Hello @wagneriandreamer , I’m new to this chat. I was just recently diagnosed with PNET. I...

https://connect.mayoclinic.org/comment/782732/

Discussion: Newly diagnosed - neuroendocrine tumor in intestines

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 9, 2022

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