1 year in and looking for information

Discussion Board Forums General Discussion 1 year in and looking for information

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  • #35153
    lainy
    Participant

    Hello BDK and welcome to our Family! You are already a survivor, congratulations for that.
    I will keep this short as I agree with all above comments, just want to say don’t listen to statistics as we have many Miracles on our Board and unlike a bakery we don’t take a number and stand in line waiting to be called. Please feel free to visit often and ask away, vent or advise. Also please keep us posted on your progress!

    #35152
    mlepp0416
    Participant

    BDK:

    Welcome to the best site on the internet for persons with Cholangiocarcinoma! It’s the site that no one wants to join, myself included. With that being said, you will find a ton of information on this site, simply by reading the previous posts!

    My husband Tom also had a resection in June 2008. After removing 3/4 of his liver and gallbladder, they said no chemo and no radiation because all his margins were clear. You can read his journey under my login name, mlepp0416.

    After numerous ctscans, liver enzymes coming down, tumor markers coming down and being told over and over that he was cancer free, in Nov. 2009 he started turning yellow. A CTScan revealed a new tumor in the remaining Rt lobe of the liver, in the center of the biliary tree. Inoperable because of it’s position and because it involved the main blood vessel in the liver.

    As Marion stated, each case and each person is different and can have different outcomes given the circumstances. Tom and I are not giving up and we’re committed to KICKIN’ this cancer, even given setbacks like the new tumor. We got 2nd and 3rd opinoins. The one common thread that we have seen is that all his new doctors said that even with clean margins, Chemo should have been done at a minimun.

    He has now just completed about 27 rounds of radiation and his bilirubin level which had climbed to 24.7 is now back down to 9.9 and his tumor has shrunk. His tumor markers which were at 466 are coming down again and were about 336 at the last check.

    Be vigilant in getting your blood work done, follow doctors orders, be optimistic! Never take no for an answer and ask every question you can think of.

    Prayers are coming your way from Wisconsin!

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    #35151
    gavin
    Moderator

    Hi BDK,

    Welcome to the site, although I am sorry that you have to be here but I am glad that you have found us. Please come back often, post a lot and ask all and as many questions as you will have, as you will get a load of help and support from us all.

    That sure does sound like you did a great job in collecting lots of different opnions as to your options. And I am very glad to hear that your scans have come up clean as you say. Please try and stay positve and focus on the now, and as you say, you have been told that your surgery has cured you. Perhap that is worth focusing on more than statistics.

    My vey best wishes to you,

    Gavin

    #35150
    marions
    Moderator

    Hello BDK and welcome to our site. You demonstrate a great example of how to stay persistent. Congratulations on a successful resection. Staying vigilant with regular scans and follow-up with your physician is a must. We have seen, on this board, members live much more than the quoted 5 years in fact, Chris, is speaking of 8 years post surgery, without recurrence. It varies greatly from person to person. We will have to wait for the more updated statistics in order to prove increased life expectancy. Recurrence rate is high even after resection therefore; regular scans and other testing have been put in place. In the meantime I prefer to look at you as being cured.
    I am sure that many others will chime in real soon. This has been a hot topic for us all along.
    Best wishes,
    Marion

    #3138
    bdk5859
    Participant

    1 year ago I had 60% of my liver removed along w/gallbladder. I had gone to 6 hospitals including NW, U of C etc and everyone said chemo or radiation only to slow interhepatic CC down but thats it. Finally Loyola agreed to surgery. All scans have been clean and no further treatment to date. I’m getting conflicting info. On one hand I’m told surgery has cured me and on the other I’m told that recurrence rate is still probably 75% and 5 year life expectancy. Any comments would be greatly appreaciated either here on via e-mail @ BDK5859@aol.com. Thank you.

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