Searching for answers for my Aunt

Hi Cindy,

I really don’t have any more to add to all the good advice you have gotten but I am glad you found this site. You will be happy you did. Well, maybe not happy, but relieved. It is all so very overwhelming and all the good, knowledgable people here can help sort it out. Just as another weird coincidence, I have a sister named Cindy Lou and my name is Darla, close to the same as Darlene.

Hi Cathy and welcome to our wonderful family! NO, is a word we don’t like to hear and when a doctor tells us no, we seek out another opinion. We have quite a few survivors on here who were originally told no. Everyone has given you great advise and I am wondering about your Aunt’s age. If she is an older lady there may be the age fear and factor. It also sounds like your Aunt’s doctor cannot have treated many CC patients and we try to get someone who has. I am sending you best wishes and hope everything starts to turn around for your family. The worst part is having no game plan and once that is in place there is a big sigh of relief because something is being done.

Hello I am a cc survivor due to a liver transplant. I was diagnosed in July 2008 and was immediately put in the care of Dr. Wiiliam Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman saved my life not once but twice. I ended up having a second transplant due to radiation damage (this is very rare) You can read my story at thetelegraph.com by putting in christmas miracle. My cc was stage 4 and inoperable. I received my first transplant on May 24,2009 and second one July 4 2009. Dr. Chapman and staff are the most amazing people. i never needed a second opinion because I was in the care of the best. Please feel free to e-mail me if I can give you more information. Good luck and lots of prayers-Cathy

Hi Cindy,

Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear of your Aunt, but I am happy that your aunt’s CC seems to have been caught early enough so that surgery may be an option. In my dads case, his CC was not caught early enough so surgery was ruled out from the start and I am sure that the wondeful members here will come forward and share their experiences and knowledge with you.

I am glad that you have joined us all as you will get a ton of support as you and your aunt go through all of this so I do hope that you will keep coming back here. We know how you are feeling right now and we know what you are going through. And please, feel free to ask any questions that you might have and we will all help if we can.

To go along with the link that Marion posted, these links may also be of use to you. This is a list of some of the major treatment facilities in the USA –

http://www.cholangiocarcinoma.org/majorcancercenters.htm

And we also have a transplant board here that may be of use at some point –

http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=46

And the resections board may also provide more information as well –

http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=41

Please let us know how your aunt gets on.

My best wishes to you and your aunt,

Gavin

Hi Cindy, how great it is if there are no mets! Im wondering if the chemo worked to shrink the tumor? Northwestern in Chicago may be worth a phonecall, I know in my dads case, they were able to operate and remove the tumor. It is definitely always good to have an advocate getting info, processing info, helping with decisions, your aunt is lucky to have you.