Cholangialcarcinoma

My sister, 43, was diagnosed with this rare form of liver cancer in Nov.2004. She has since began treatment at Memorial Sloan kettering on NYC. I have not found them to be very informative as to what to expect, other options or other support that may be helpful to our family. We are trying a new Dr. and he seems to be more progreesive and not affiliated w/Sloan. Does anyone have any info that could help us get a handle on this diease. My sister has a 10 yr old little girl and she wants to do all she can to make for the sake of her child.

I just responded to another message on this very disease. I was on the message board and clicked on bile duct cancers. If you can't find it, please let me know.

I am 28 years old, recently diagnosed with advance cholangiocarcinoma, and started on chemo 10 days ago (Cisplatin / Gemcitabine combo). I am being treated at another supposed top notch facility - MD Anderson in Houston. Docs pretty much told me I'm going to die. I told them I wanted ultra agressive therapy and was not concerned with quality of life - I just want to increase my chances. They just look at me funny and seem to ignore my request. I'm assuming your sister's cancer is inoperable according to standard methods. There is a radical procedure called ex vivo liver resection and autotransplantation. I only found one performed in the US by Dr. Alan Hemming at the university of Florida. This procedure is not for everyone, since there is a considerable risk of death.

Hope this helps and never give up hope!

http://www.shands.org/professional/ppd/ppd_article.asp?ID=26
http://www.mesotheliomaresource.org/news/cancer-medical/canc
http://annonc.oxfordjournals.org/cgi/content/full/14/7/1115

I'm glad you are not giving up hope. The statistics are bad, but SOME people do live. It sounds like you've decided which camp you want to be in.

My husband has bile duct cancer. He is doing pretty well. His cancer was inoperable until he went on a regimin of Gemzar and Erbitux. Erbitux is a new colon cancer drug. After eight treatments, his tumor had "shrunk dramatically". It did not do a whole lot more the next few months, but it was enough that they were able to resection his liver. He still has the cancer on the remaining side of his liver, but there is a new proceedure that he did about a month ago where they place tiny, radioactive beads into the liver through the femor artery. This was done by Dr. Charles Nutting--in Denver at Porter Adventist Hospital. They have had good results with this. My husband has not had a follow up PET scan, but we are hopeful. The Erbitux has seemed to have run its course, so now he is on another new colon cancer drug, Avastin.

hi, can i say firstly that i am very sorry to hear that you are faced with this dreadful disease and i hope that you are doing well on the chemotherapy. My 61 yr old dad is also suffering cholangiocarcinoma. he is terrified and about to start on gemcitabine and cisplatin combination as the tumor was unable to be removed surgically. He did however have radiofrequency ablation which has worked well. The cancer had spread to the liver and his most recent CT scan shows that the majority of cancer cells that had spread to the liver have now died. do you mind sharing with me how you have done on the chemo? - i hope it has worked well for you.