Dear LadyLinden welcome to our remarkable family but sorry you had to find us. I cannot help with Chemo and Trials as my husband never had those treatments but WOW, did he have the horrible itching as well. Sounds like you are on the right track and hoping and wishing for the very best for you. I know you will be hearing from more members and please do keep us posted as we truly care. BTW we have had Members who were DX at Stage IV inoperable and after treatment things all changed for the better.
Hello, So glad to have found this website! I was diagnosed on May 24, 2013 with cholangiocarcinoma, Stage IV, inoperable. Prior to diagnosis, I thought I was very healthy except for fatigue. Nine days prior to May 24, I began not to feel well and had uncontrollable itching. I went to urgent care centers three times in one week. Finally, could bear it no longer and checked into Henry Ford Hospital, West Bloomfield, MI emergency room. They took a cat scan and mri. I was told I had a 6 cm liver mass and would need to have a stent placed for drainage of the bile. Bile duct was obstructed by tumor. I have been stented 3 times since May 27, 2013. The procedures went great and has made me comfortable, although I must watch my food intake. Cholangiocarcinoma was suspected per my chart right from the beginning. PET SCAN confirmed metastasis to lymph nodes. I will skip the details, but if you want to know, please e-mail me. I have been accepted at University of Chicago for a clinical trial study. IS ANYONE familiar with the FOLFIRINOX study? If so, I would appreciate hearing from you.