Anyone Out There With Neuroendocrine Cancer?

Hi there,

My husband was diagnosed in October of 2005 with stage 4 neuroendocrine cancer (unknown primary) with mets to liver and some to bone. I came across this website a few weeks ago and have been reading all of the posts daily and have never found anyone with this type of diagnosis. My husband was inititally treated with Cisplatin and Irinotecan, then it was determined his cancer was a slow growing type (carcinoid) so he was switched to Thalidomide for a few months, then onto a combination of Thalidomide and Temodar for a few more months. Next he went into a clinical trial of Avastin and Panzem for about 10 months, but recently went off the trial as he was starting to experience a great deal of pain in the area of his liver and there was some growth to his tumors. He is now on a combination of Avastin and Xeloda (4 weeks into it now) and will go through a total of 9 weeks of treatment before his next CT scan.

Has anyone been treated for this type of cancer with any success? What other options are out there? I am looking into another type of treatment for him - there is currently a Phase 1 Clinical Trial using the Seneca Valley Virus, a naturally occurring animal virus which has been shown to attack tumors with neuroendocrine features when injected into humans. It sounds like a scary science experiment, but if it can help my husband I am all for it. Of course I am left to do all the research about this on my own, as my husband's oncologist basically dismissed this option as "just another one of those vaccines that probably doesn't work".

I would appreciate any feedback anyone could give me. I am extremely frustrated that this particular type of cancer has no specific treatment. I am growing tired of the "Let's try this drug - it works for (colon, brain, lung, etc) cancer patients." Meanwhile my husband is slowly deteriorating while we helplessly watch him fade away. He is only 42 years old, and we have 3 children, ages 12, 10, and 3.

Thanks for listening. My prayers go out to ALL of you who are fighting this horrible fight.

Jodi

Hi my name is Carrie, I live in Western Ma.  I am sorry that I cannot offer you the answers you are looking for.  Since this was written back in May I hope that you have come across some more answers and your husband is doing better.  I am 32 and was diagnosed at age 29 with Neuroendocrine (carcinoid) in pancreas, dneumde (small intestines) and mets to my liver.  I have been on similar stuff as your husband and stuff worked for about 1 1/2.  Well if you want to talk please email me I might just offer a shoulder to support you with.  I wish i had the answers.  Boy do I ever wish!!  Please visit my website  www.caringbridge.org/visit/carriesnelgrove  or email me at

 You and your family are in my thoughts and prayers

Carrie :)