Bile duct cancer in person with Down syndrome

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  • October 21, 2009 at 5:26 pm #32237
    martie
    Spectator

    Thanks everyone. I’ll check on all these good ideas.
    Martie

    October 21, 2009 at 3:41 am #32236
    marions
    Moderator

    Thanks Patty….I just found it, also. These librarians are always one step ahead. Thanks so much.
    Marion

    October 21, 2009 at 3:36 am #32235
    tiapatty
    Member

    I, too, remember Julie’s sister posting and was able to find an old post, her name is Belle, here is her profile:

    http://www.cholangiocarcinoma.org/punbb/profile.php?id=2135

    You can get her posts from here and also send her an e-mail.

    Patty

    October 21, 2009 at 3:06 am #32234
    marions
    Moderator

    Martie…Julie Goss had Down Syndrom. Her sister (I can’t remember her name) had posted about some difficulties regarding anxiety and treatment problems. It is possible that you may receive a response from her if she is still logging in to our site. I will also try my hardest to find her discussions and with that hopefully, her e-mail address.

    Best wishes,
    Marion

    October 20, 2009 at 11:46 pm #32233
    Bazel
    Spectator

    Martie,

    I have not cared for someone with Down’s Syndrome and bile duct cancer but I am thinking that you may also want to post a similar type question in a broader forum – maybe the American Cancer Society (and for that matter a Down’s Syndrome forum??) has a forum board?? I think techniques would like cross “types” of cancer and focus on care tips there.

    Sorry I can’t offer more help.

    Bz

    October 20, 2009 at 9:38 pm #2792
    martie
    Spectator

    My 49 year old brother was diagnosed last year with bile duct cancer. He had a metallic stent placed in his bile duct. His jaundice and itching were relieved with the stent placement.

    He has Down syndrome and because he was feeling better, he thought he was cured. We have never used the cancer word with him. He has been through several family members dying of cancer and it scares him.

    Now his jaundice and itching are back. I assume the stent is no longer functioning. He can barely tolerate getting blood drawn without being sedated.

    I am wondering if anyone else has taken care of someone with Down syndrome and bile duct cancer and if they have any specific recommendations for how to help.

    Thank you.

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