You are not logged in. Please login or register.
La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Due to recent news about new cancer treatments, CCF is gathering information about your experience with genetic testing of your tumor. Whether you have or have not
had any genetic testing it is important to answer the questions to help us make progress in cancer research.
Take the Survey
Posts found: 2
Thank you Lainy and Pamela. I consider it somewhat unfortunate that since the very beginning of this journey that many doctors and specialists who have worked with and on me have not had even one positive thing to say to me (at the time that I was in the hospital there were up to 7 different physicians trying to decide what to do). Finally, here...I think...I am able to find some positive feedback. Please know that I appreciate your support.
Introducing myself...with a huge desire to get involved in the ongoing discussions. My name is Tom, 68 years old living in Eastern Washington State. I was diagnosed with CC towards the end of February of this year...after a small time period during which my family physician and a general surgeon believed that something else might be going on....and it almost goes without saying that I am extremely worried as to how this thing may develop. I had all of the usual symptoms at that time...rapid weight loss (30 pounds in 6 weeks), very high bilirubin level, loss of appetite, etc. After a week in the local hospital...and a failed attempt to place stents in the bile duct I was sent home with a biliary drain in my side. At the end of March stents were finally placed in the bile duct which the doctor described as a very difficult procedure (the doctor indicated that it took 5 times longer than normal to do the procedure). I began chemo treatments in the middle of April and they are ongoing at present....Oxaliplatin and Gemzar. My oncologist and several other doctors feel that resection and radiation are out of the question since the cancer has wrapped its nasty fingers around the blood supply going into the liver....and one lobe of the liver is also showing presence of the CC there. My concern is underscored by the fact that about three weeks ago I had a CT scan which shows that the tumor has neither shrunk in size (it was 4 centimeters in size at the start) nor has it enlarged at all....sooooo, chemo treatments continue. I am heartened to read here that there is hope...and I am also made aware now that there are other avenues of treatment to explore. I agree wholeheartedly with a statement that I read on this website that "The last thing to die is hope!".....it has to be that way.
Posts found: 2