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Neuroendocrine carcinoid with mets to the liver

sisterofasurvivor
Posts: 2
Joined: Dec 2009

Hello I am new to this website and was looking for someone who is or has experienced this illness, specifically to give insight so I can help my 43 yr. old brother who was diagnosed in June of 2008 and underwent the TACE procedure in Oct. of this year. Thanks for listening.

daniel_joo
Posts: 1
Joined: Dec 2009

First and foremost, my deepest sympathies for your brother's condition. I am contacting you on behalf of the Caring for Carcinoid Foundation (CFCF). In addition to funding research for carcinoid and neuroendocrine tumors, we provide information about the disease and treatment options on our website. I encourage you to visit the site at www.caringforcarcinoid.org, and if you have any additional questions, please feel free to call us as well at 617-848-3977. Finally, our facebook page (www.facebook.com/caringforcarcinoidfoundation) has consistent updates on events and recent news regarding the neuroendocrine community, I hope you'll join us.

Sincerely,
Daniel Joo

DiannaB
Posts: 1
Joined: Aug 2007

In addition to the great info you can get at the Caring for Carcinoid Foundation site, you can also get good information at www.carcinoid.org which is the website of the Carcinoid Foundation, (yes, I know the names are similar), one of the oldest resources for carcinoid and neuroendocrine cancer. You can find all kinds of information there...help for newly diagnosed, doctors and physicians who have experience treating carcinoid and NETs, recordings of conferences, etc.

Your first step should be to get to a carcinoid specialist. Your local doctors may have only seen a few of these cases in their lifetimes...you will need an expert who works with this stuff every day. Unfortunately, not only is carcinoid and neuroendocrine cancer rare, but each survivor reacts differently to the disease and treatments. You really need one of the gurus on your side.

You may find a carcinoid support group in your area helpful too...Many welcome not only carcinoid survivors, but caregivers and family as well. Many of the carcinoid support groups are listed on www.carcinoid.org and have ways to contact them listed.

I was diagnosed with carcinoid with mets to the liver early in 2006. This is a life changing event for your brother and his family. Feel free to email me if you would like more information.

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