Neuroendocrine Tumors (NETs) Support Group

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Comment

Dougt - There is a good website you might checked out www.netrf.org (Neuroendocrine Tumor Research Foundation)...

https://connect.mayoclinic.org/comment/1143245/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2024

Comment

No on bland embolization, did not try lanretide, been on octreotide for 1 yr. had 4...

https://connect.mayoclinic.org/comment/1037570/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2024

Comment

I'm in the same situation. Lasix not helping. Started in legs then around waist then abdomen....

https://connect.mayoclinic.org/comment/892443/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 8, 2023

Comment

I would recommend checking out Memorial Sloan Kettering in NYC as I think they have state...

https://connect.mayoclinic.org/comment/879794/

Discussion: Octreoscan/Ga-68 DOTATATE PET/CT -- Where to go?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2023

Comment

Here’s a brief summary prior to starting treatment with Dr Wolin. 59 year old male presents...

https://connect.mayoclinic.org/comment/1238487/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16 4:10pm

Comment

Yes, they remove the gallbladder because if you get on Lanreotidd treatment ( as I am)...

https://connect.mayoclinic.org/comment/1249277/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3 8:52am

Comment

I have not heard where PRRTwas your first course of treatment, then CAP/TEM. Of course we...

https://connect.mayoclinic.org/comment/1190917/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2024

Comment

I appreciate you sharing your experience with lantreotid shots, @dbmenger. You said that you have "...no...

https://connect.mayoclinic.org/comment/1348041/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14 11:51am

Comment

My husband was diagnosed with carcinoid in 1995. He had one tumor removed between the Illium...

https://connect.mayoclinic.org/comment/1376925/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22 4:48pm

Comment

Thank you, @Roseflame!Thank you for the advice! I will start biotin! I also have elevated blood...

https://connect.mayoclinic.org/comment/1126586/

Discussion: Facial and lip sores from lanreotide injections for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 19, 2024

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