Lynne - My husband, Dan, was diagnosed with cholangiocarcinoma in August 2005. Next week, it will be one year since he was diagnosed and he is still active and doing well. He has been taking Zeloda and Gemzar continuously since January '06, with a few weeks off here and there because of infections and a few other complications.
His CA19-9 (tumor marker) is now at 40- from over 900 originally. His liver function tests are almost normal, too. He has had a metal stent in place for over 8 months and it's still functioning well. He recently had a CT scan and just received the results today. The news was the best we can hope for---no change, no new tumor growth, and his original tumor has shrunk from over 5 cm to 3.8 cm.
He does have some fluid around his right kidney that is causing some discomfort, and aside from being tired occasionally, he feels fine. We are enjoying all his good days and continue to pray for many more.
My message to you is that, while there may not be a cure, there is plenty of hope and much longer than just 2-6 months. Get the best doctors you can find that have dealt with this rare type of cancer (our experience was that doctors that have had little or no experience with this disease give you little hope or encouragement), get 2nd & 3rd opinions if necessary--and especially, keep a positive attitude, don't ever give up hope and don't let anyone take your hope away. Best of luck--please keep us posted on your progress.