My Uncle was recently diagnosed….
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Dear Brian- Welcome and like we all say here sorry you had to find us. I am a cc
survivor due to a liver transplant.I have the most amazing story to share. I was diagnosed July 31, 2008 and now 2 years later I am well and alive!! I was perfectly fine with my only sympton being incredibely itchy. By the grace of God I was put in the care of the most wonderful doctors at Barnes-Jewish Hospital in St. Louis, MO. Barnes is listed as one of the few cholangiocarcinoma centers. My amazing “miracle worker” was Dr. William Chapman (google him) and staff.
I had to undergo chemo, 24 hour chemo pump and radiation together before going on transplant list and oral chemo while waiting for liver. You can read my story by going to thetelegraph.com and typing in christmas miracle.
I would love to talk to you or your uncle so feel free to e-mail me or call at 618-567-3247. I love to share my story because it is the one way I can honor my donors (I ended up having 2 liver transplants), I am alive because 2 families gave selflessly in there time of trajedy. Lots of prayers-CathyGO GREEN RECYCLE YOUR ORGANS-YOU CAN SAVE A LIFE
Dear Brian – Welcome to you and your uncle. Our thoughts and prayers are with you. You are on a new roller coaster and the downs are tough – so hold on tight. The ups are to be celebrated and cherished. Hopefully you with your medical knowledge and love for your uncle and him with his great attitude, will make a winning team in his treatment. We are here for you and encourage you to visit often with questions, just to vent, or to offer support. Blessings, Susan
HI Brian,
WElcome to the site. Sorry that you had to find us all and I am sorry also to hear about your Uncle. You have done the right thing in coming here and joining us all as you will get a load of support from everyone here. I came here back in 2008 when my dad was diagnosed and everyone helped me so much and I know they will all do the same for you. My dads CC was also deemed inoperable from diagnosis, too close to the portal vein and he had PDT as his treatment.
You will also find out a load of information here and please feel free to ask as many questions as you have. We also have 2 other specific boards that will be of interest to you, a chemo board and also a radiation board and you will find a lot of great posts there from our members. That is great to hear that your uncle has a positive attitude as this will help carry him a long way. I hope you will keep coming back as we know what you are going through right now and how you feel.
My best wishes to you and your uncle,
Gavin
Hello Brian and welcome to our wonderful family but sorry you had to join us.
As Nancy said we have had many go through the same treatment as your Uncle Kurt is going to receive. Being a Medical student you know that knowledge is a powerful weapon agains CC so read up as much as you can. When one first hears this diagnosis the response is real fright and rightly so but once the game plan is started somehow that fright turns to fight. Wishing your Uncle the best and please keep us posted, we all care!Brian – Welcome to our website which will provide you with so much information and support! Your uncle is lucky to have someone like you in his life! Your medical knowledge will help you to understand all that is going on. I suggest you read through some of the older posts to help answer many of your questions. Use the search engine at the top to navigate through topics. There are many folks here who have had the chemo/radiation treatment and you should be able to find their posts. Where is your Uncle being treated? We always believe it is very important to find doctors/treatment centers that have experience with cholangiocarcinoma. If there are any questions you have along the way, feel free to ask our wonderful “CC” family who will do everything they can to help answer questions. Best wishes and prayers to Kent – Nancy
Hey all,
My uncle has recently been diagnosed with CC. His tumor was inoperable so now he’s in line for chemo/radiation with hopefully a liver transplant in the future. I know this is a relatively new treatment, but I don’t know much about the process. I wanted to join this board both to get some information about this disease and to have a support system who can relate to what we’re going through. My uncle and I are very close and this is hard on me, but I have hope. From what I’ve been reading, they’ve made real progress with this cancer. My uncle is one of the greatest people I know. His attitude about this has been very positive, even when the news hasn’t always been. He’s in good health and we think he’s a lock to get on the transplant list, but I know this still takes time, and it’s time that scares me. I’m a 2nd year medical student so I know some of how cancer invades. I know that lymphatic spread is common with carcinomas and I worry that the time he has to wait for the transplant may allow enough time for the cancer to metastasize and really cause some problems. I was just wondering if anyone else has been through this specific type of treatment, and how everything has worked out so far?
Thank you all so much for your help, and please keep Kent in your prayers.
Brian
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