Some Good News In Our Fight Against Cholangiocarcinoma

I just wanted to share some good news with everyone who is searching for information on cholangiocarcinoma. My husband had surgery on October 8, 2004 which removed the Klatskin's tumor and 2/3 of his liver. He did not get clean margins so he had adjuvunct therapy in Jan and Feb which included radiation and 5Fu chemo. Unfortunately, a new tumor appeared in March. He just finished an 8 week treatment of FOLFOX 6 (a combo of three chemos) and Erbitux. The great news was that the CT scan showed there was no new growth and the tumor shrunk somewhat. The doctors were very surprised and extremely pleased with the results (they expected to see growth). He is starting on another round of FOLFOX 6 and this time they are replacing the Erbitux with Avastin to see if the Avastin will help with the fluid build-up in his stomach. The Erbitux caused a pretty bad rash on his face so it will be nice to get some relief from that. Hopefully the new combo will continue to work. We are also trying natural remedies including a healthy diet, vitamin, mineral and herb supplements, and accupunture. It's hard to know what is working but we will keep doing everything we can and hope we continue to get good results.

Hello
My father has a Klatskin tumor in his bile duct but he has been told that there's no resection possible. We live in Prince George, BC Canada.
He has started to build up fluid in his stomach.
He has to get it drained once a week.
He has been basicly to go to Hospice House and that is it.
Any info would be good. Thanx in advance.
Where can you get this surgery?

Hi. I'm so sorry to hear about your father. I know one of the places you can get this surgery is at John Hopkins in Baltimore, Maryland. The surgeon is Dr. John Cameron. I have heard very, very good things about him and he performed the surgery on a friend's father. My husband had his surgery at a military hopsital in Hawaii. I wouldn't give up trying. I have read about other people who were told it couldn't be resected but they found another surgeon who could do it. Liver transplants can also sometimes be an option. From what I understand the Mayo clinics often perform liver transplants. There is also a big liver center at Pittsburgh Medical Center. You should read the other entries in the message boards for Bile Duct cancer on this website. I know there were other names of treatment locations and doctors posted there. Good luck and don't give up.

Thank you for your kind response.
I will discuss with my dads' surgeon here then
proceed with the next course of action on our part.
Can never give up hope.

Dad should be back in Canada by Thursday.

I'll get him on this discussion bord and talk to like minded people. There might be something that is working for someone else that he has not tried.
May God bless all that are affected by this terrible cancer, and that there will be a cure found soon.

this is a reply to susan's posting. I hope that your husband is continuing to do well, it is heartening to hear that someone out there is winning the fight against this dreadful disease.

I just wanted to add to your reccomendation for a second opinion. My Dad (61) is just about to have his second op to try to remove the tumor which has spread to his liver. We were told by the surgeon that performed the first operation that this would not be possible. At the time of writing I can not tell you if the second op is successful, however my Dad has made the decision that he wants to give it a shot.

My dad has actually seen about 4 different drs now who all give conflicting advice. The surgeon who is performing the op tomorrow has a reputation for an aggressive approach towards resection. My advice to anyone out there is to seek at least 3-4 opinions before starting on any course of treatment and seek out a specialist surgeon in this area - it is complex and risky surgery.

I'm new to this board. Actually, the first time I've spent much time researching bile duct cancer and 'stumbled' across this board. I was diagnosed in early Dec. of '96. I was so fortunate to have doctors who were on top of it. I had one test after the other, in some cases two tests on the same day and was in surgery a week and a day from my first doctor visit. They were aware of a blockage in the duct, could see it in the CT scan and ultrasound but were unsure of the nature of it. Dr. Mike Hart at the Swedish Medical Center in Seattle determined that surgery was called for in any case and they would find out the nature of it in surgery. They indeed discovered cancer in the bile duct and gall bladder and removed them. He told me the next day that they were unable to remove all of the cancer (which I don't quite understand to this day) and I would require chemo and radiation follow-up. I never asked any questions about the prognosis because I probably didn't want to know. (I need a shirt that says "You people talk about DENIAL like it's a bad thing").
I subjected myself to the prescribed treatments, lived each day as a gift from my Heavenly Father and let the pyhsicians worry about the state of my health. Afterall, that's why they make the big bucks. There's been a few bumps in the road (and there's not room on this message board for the whole story) but I'm cancer free and coming up on my ninth year; Dec. 18. Thanks be to God! This insidious cancer can be survived...

bob