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Carcinoid cancer

Posts: 1
Joined: Aug 2009

Does anybody have this disease? I am lost right now. I have had the cancer three times in three years. Two major surgeries on stomach- abdomen. First surgery was partial removal of stomach. Second was stomach hernia repair with mesh, yikes! So painful... Very depressed, and need to communicate with fellow sufferers or survivors.

I have never broken down emotionally, just take on challenges as my motto: "it's not what you go through, but how you go through it". Am I abnormal or just good at coping?

Need a support group bad.

Candace M

renalcarcinoidguy's picture
Posts: 14
Joined: Aug 2009

Net tumors and Sandostatin
Hi, i have neuroendocrine carcinoma renal carcinoid. I have been through 2 clinical trials @mdacc from 05 to 09. The injection mentioned in this post is Sandostain Lar typically 30 but can go from 20mg to 60mg. It works on symptoms but tudies have shown it may inhibt midguy tumors. I have a detailed blog (my history is on the first 4 entries on the blog August 08). It has a number of links including to all the carcinoid foundations and a number os studies on lar including a link on sando as fyi. My blog is

I am currently undergoing PRRT treatment in Europe which is the most promising and effective systemic treatment relative to studies available. I have a ton of information on this treatment also. Look under PRRT on the top of the blog there is a search egine for the blog itself.
I accumulated the informtion for myself and to share with others. I literay have been through hell and wanted to share the path I took and hopefully others can pick up something and sharein return.

Btw, currently, I am going to Bad Berka with Dr richard baum who has a extenisve conference video of 1 hour again on the site.

C- there is a discussion board (also linked) names ACOR and sign up. Go to carcinoid and you can share you throughts and issues and questions there. A lot os support there. Always available to talk with you however. Hang in this cancer is log term is you have the right md;s treatment and ki index! take care

Good luck to all of you and glad to charge information if need. Stay strong!

renalcarcinoidguy's picture
Posts: 14
Joined: Aug 2009

Acor.com, sorry I posted twice.

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