Topic: Bear with me - I'm new to this!

We're so blessed to have this wonderful site.  Hi, my name is Carol and my husband Charlie (53) was diagnosed in June of this year with cholangiocarcinoma.  We have 2 great kids, Sarah, 19 and Ben, 16.  We're in Winston-Salem, NC.  Things have been a roller coaster for all of us as I'm sure you all have experienced.  Good to be here and God Bless You All!

Re: Bear with me - I'm new to this!

Hi Carol.
Welcome to this wonderful site, though sorry you needed to find it!! If you need anything or have any questions we are all here for you. There are some very knowledgable people here who can answer questions or point you in the right directions (though I am not one of them!)

Whenever you need support, post. We all do are best.
Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Bear with me - I'm new to this!

I'm new to this and not sure where to begin.  My name is Sonya and my uncle was just diagnosed 2 weeks ago and they really haven't given him a lot of hope.  He's beyond the point of surgery and can't get his insurance to get on the ball so he can get his chemo med (Xeloda?).  Just thought that I would see what I could find out this cancer.  We live in Virginia and he was told he could go to Maryland and be a guinea pig basically.  Hoping to find some information from others who have some knowledge to share. 

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Re: Bear with me - I'm new to this!

Sonya - where in VA do you live?  I live in Chesapeake and my husband was diagnosed with cc March 26th, and is also unable to have surgery.  All of his doctors here have sent us to Maryland, specifically to Johns Hopkins in Baltimore.  Its about a 4 hour drive, but we have had some positive results with Chemoembolization (see experiences section).  We had some trouble with our insurance giving the okay for treatment, as his tumor is twice the size as their guidelines allow, but once the doctors called, everything was cleared for treatment.  I wouldn't say your uncle or my husband  is a guinea pig, but from what I have read, and learned there is a lot of trial and error with this cancer with chemo and other treatments. - Colleen

Re: Bear with me - I'm new to this!

Hello.  My father has been battling cholangiocarcinoma for almost a year.  Resection is not an option because of his age, poor physical condition and location of the tumor.  Has anyone had experience with attempts to remove the tumor with the use of a cyberknife?

Re: Bear with me - I'm new to this!

Sonya -we are in NO VA and being treated by Georgetown Univ by one of the top G I oncologists Dr John Marshall.  There is not a huge list of experienced oncologists for this disease, they all seem to know each other, and are in contact with the same resources. This disease has so little data and approved treatments, that this site will be very helpful to you. Like Colleen's husband, my husband has also had some initial positive results with chemoembollization, and it has allowed us to get off the roller coaster for a bit of time this summer and live normally. Also had to appeal to insurance company -but we were finally successful, and the battles will probably continue...as so much of these treatments do not meet guidelines, there are too few of them.