Cholangiocarcinoma

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cvertz
cvertz Member Posts: 5
edited March 2014 in Rare and Other Cancers #1
I have just recently joined this site because my wife was diagnosed with cholangiocarcinoma on February 17th. Her original doctor said that her tumors are inoperable because they have spread to her lymph nodes. She currently has appointments at the University of Chicago and the Mayo clinic for second opinions. This is where I believe she will be getting her treatment. The original diagnosis somewhat took us by surprise because they basically said there wasnt anything that could be done. If anybody has fought this disease or has any trial information that could be helpful I would appreciate your comments. We are all staying positive and keeping up the fight!

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  • BW
    BW Member Posts: 1 Member
    #2
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    Cholangiocarcinoma
    Hi cvertz, I'm Bill, 58yrs old and fighting CC for 15months. I can tell how I have done so far maybe it will give you a little insight into what might be helpful to you. Diagnosed on
    11/14/08 and like you my wife and I were caught by surprise. It also had spread to the lymph
    nodes and is inoperable. We had all the tests done at the Mayo Clinic and they thought we were
    canidates for photo dynamic therapy (PDT- you can google it). They also recommended chemo.
    Both of these was just to buy time, a few months was the best guess. Well we've done the PDT
    3x now. It burns off some of the tumor and allows for a plastic stent to be placed is such a
    way to keep the bile duct open. Side effects are extreme light sensitive. Both sun light and incadescent mostly. 2 weeks to recover but not in bed except a few days and the stent which is temporary, 12wks max 6wks on the short side. Stent life determined by how soon it clogs up
    or attracts infection. Usually it starts with a fever. As far as chemo goes we said no. We also drastically changed my diet. No sugar(nothing made w/sugar),No dairy(nothing made with dairy) No caffeine, I stay away from acidic foods too. I read inspirational books.
    Prayers of family and friends is the most powerful help you can get. I also have greatly improved my own relationship with God. I have graditude for each day and all thats in it.
    The first yr. I lost 50lbs, I was at 200. I've had many fevers, fatique, and hopeless days.
    DON'T LET IT GET YOU DOWN! You have youth on your side. You need that energy to fight. Get
    rest don't over do it. Listen to your body it does talk to you. When it says rest get rest.
    I hope I have been of some help. I think you have enough to digest for now. Feel free to ask any questions you like. I'll say some prayers for you. Take Care, Bill
    By the way this year has been better so far. I've gained 6+ pounds and haven't had a fever
    since mid October. Thank God!

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