Neuroendocrine Tumors (NETs) Support Group

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Comments (1,790)

@donnapeck51, as @californiazebra mentioned there are merkel cell discussions you might like to join. Here is...

https://connect.mayoclinic.org/comment/1177083/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2024

@sophiarose, I'm sorry to read of your treatment complications. I'm tagging fellow NETs members @trivia @jhilbish...

https://connect.mayoclinic.org/comment/906085/

Discussion: Bland Liver Embolization complication

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 1, 2023

I’m very sorry to hear but glad the surgeon says are options. If You don’t mind...

https://connect.mayoclinic.org/comment/763130/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 19, 2022

I have been on Lanreotide ( every 4 weeks) for 2+ yrs now for pNET with...

https://connect.mayoclinic.org/comment/1279952/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12 9:41am

My husband was diagnosed with GITract small bowel Neuroendocrine tumor Stage 4 Grade 2 well-differentiated KY...

https://connect.mayoclinic.org/comment/1120029/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 8, 2024

I've been told MRI with contrast is best way to detect liver matastasis. With PET/CT there...

https://connect.mayoclinic.org/comment/805340/

Discussion: What's the best way to detect liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2, 2023

You are so welcome and thank you for words of encouragement. Sounds like you have a...

https://connect.mayoclinic.org/comment/826704/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2023

The treatment plan that was discussed with me in 2018 for my NETs was Whipple surgery,...

https://connect.mayoclinic.org/comment/898267/

Discussion: NET's and possible liver transplant discussion

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2023

I have neuroendocrine lung cancer stage 4, grade 1. Liver and bone nets. I've gotten good...

https://connect.mayoclinic.org/comment/1227132/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1 3:41pm

@harley4650 My wife also only has NET in liver only as least that shows on all...

https://connect.mayoclinic.org/comment/1047348/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 8, 2024

When will you know if the treatment was successful ? I have pancreatic with mets to...

https://connect.mayoclinic.org/comment/1007994/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2024

Thank you for your response. I'd been told "flushing" might be a part of the liver...

https://connect.mayoclinic.org/comment/993700/

Discussion: Anyone have bouts of severe sweats accompanied by muscle weakness

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 8, 2024

Good Evening. I’ve been away for a while. I recently lost my sister and have been...

https://connect.mayoclinic.org/comment/320990/

Discussion: Inflammatory Pseudo Tumor

Support Group: Digestive Health

Posted: Jan 6, 2021

Hi I was diagnosed in June of2021 with lung to liver net Ki67 1-5% with two...

https://connect.mayoclinic.org/comment/813436/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2023

I also had similar results on CAP/TEM with my pancreatic NET with liver metastasis. Every thing...

https://connect.mayoclinic.org/comment/1038336/

Discussion: Treatment for GI NET with liver mets not working: Options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2024

Fortunately, no fatigue. Hypoglycemia worsened but that could also be tumor growth in the pancreas. They...

https://connect.mayoclinic.org/comment/831407/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2023

My pancreas had an 8x6cm tumor. My liver also had innumerable lesions with the largest being...

https://connect.mayoclinic.org/comment/1254696/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10 10:54am

I have pancreatic neuroendocrine tumor with liver metastasis. It is grade 1. I am scheduled for...

https://connect.mayoclinic.org/comment/992109/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2024

Please read my comments and experience on Histotripsy (of the liver). 2 articles above you.

https://connect.mayoclinic.org/comment/1199558/

Discussion: I recently learned of histotripsy treatment for metastatic NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

In my experience every time I read the latest scans summary, it's a day of new...

https://connect.mayoclinic.org/comment/1219632/

Discussion: Liver masses found on CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23 10:23am

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