High Grade Neuroendocrine Carcinoma

Hi, I'm new here. A very close family friend was dxd last week w/ High Grade Neuroendocrine Carcinoma in the pancreas. The Dr's are not giving much hope, but not much info either. They have said nothing about it moving into the lymph nodes, only a couple of "spots" in the stomach. He is having the Whipple procedure done as I type this message. He is 68 yrs old and ALWAYS been healthy. He has never even had a toothache. He is very weak right now because he has been fed w/ an IV for the past week and has developed a severe case of the hiccups that won't subside. Has anyone had any experience w/ this type of cancer? The Dr's are saying it is rare. Thanks so much!

I also have Pancreatic Neuroendocrine Carcinoma.  Please visit my blog which talks about what my treatment plans are and what my Doctors are hoping to do.  Mine moved to my liver instead of my stomach, so it will not be exactly the same, but there is a lot of info and links about the cancer and treatments.  I would be happy to talk to you further about it but I have to run right now to get down to UCLA.  I am having surgery down there this Tuesday.

The thing that made the most difference in my fight was finding doctors who had experience with this type of cancer.  It is rare and that makes it much more difficult.  Please look at getting a second opinion if you are able to!

Talk to you later and good luck to your friend and his surgery! 

Mark

http://ouroboros1.blogspot.com 

 

On 1/25/2008 fxshot wrote:

I also have Pancreatic Neuroendocrine Carcinoma.  Please visit my blog which talks about what my treatment plans are and what my Doctors are hoping to do.  Mine moved to my liver instead of my stomach, so it will not be exactly the same, but there is a lot of info and links about the cancer and treatments.  I would be happy to talk to you further about it but I have to run right now to get down to UCLA.  I am having surgery down there this Tuesday.

The thing that made the most difference in my fight was finding doctors who had experience with this type of cancer.  It is rare and that makes it much more difficult.  Please look at getting a second opinion if you are able to!

Talk to you later and good luck to your friend and his surgery! 

Mark

http://ouroboros1.blogspot.com 

 

I just read your message.  I was disagnosed with VIPomas, a very rare neuroendocrine tumor of pancreas which are supposed  to be very indolent.  they were removed a year and a half ago.  I now have a recurrence which was discovered on my first body scan last week.  I am very worried because even neuroendocrine cancer is rare and this little guy is 1 in 10,000,000.  I would rather not be this special.  In any event, where the heck do I go to find a hospital/doctor who knows what to do with me?  Thanks.