Newbie here for Mom

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Viewing 6 posts - 1 through 6 (of 6 total)
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  • June 1, 2015 at 5:40 pm #88385
    jthomas1111
    Member

    Catherine,

    thank you for the reply and kind words.

    Josh

    June 1, 2015 at 4:22 pm #88384
    middlesister1
    Moderator

    Dear Josh,

    Welcome to our group. My mother was diagnosed 20 months ago, and we have been very fortunate with her treatment thus far (she was inoperable). However, I agree that it is very important to find a major cancer center and doctors who are familiar with treating CC. And, another word of caution; although the literature and statistics can look like all is hopeless, there are more and more who are doing well, but have not been reflected yet into the statistics.

    I hope in time we will hear more from you and you will be able to contribute under our “Good News” section. However, for now just sending thoughts and best wishes for your mother and your family.

    Take care,
    Catherine

    June 1, 2015 at 4:07 pm #88383
    lainy
    Spectator

    You are welcome, Josh, and please keep us updated when you can.

    June 1, 2015 at 3:51 pm #88382
    jthomas1111
    Member

    Lainy,

    Thank you very much for taking the time to reply to my post.

    Josh

    June 1, 2015 at 3:36 pm #88381
    lainy
    Spectator

    Dear Josh, welcome to the best place to be for CC support but sorry you had to find us. I would think the ONC has to wait for the brushing results first to begin treatment. I am so glad you have been researching as knowledge is the best tool we have for CC. Looking forward to the complete DX and treatment plan. Once treatment begins all the fright will turn to fight! You will want to make sure Mom is in a place and with an ONC who is very experienced with CC. Below are some sites you may find interesting:

    Newly diagnosed:
    http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
    Free complimentary Book or e-mail download:
    http://cholangiocarcinoma.org/news/foundation-resources/
    Biliary drainage – stent information card
    http://cholangiocarcinoma.org/biliary-emergency-information-card/
    Register for a CURE
    The International Cholangiocarcinoma Registry
    http://cholangiocarcinoma.org/professionals/research/patient-registry/

    Please keep us updated as we truly care.

    June 1, 2015 at 2:37 pm #11327
    jthomas1111
    Member

    Hello,

    Mom got diagnosed with PSC and a 14 mm length stricture in the distal bile duct last Friday May 29th, 2015. They did a brushing and we are awaiting results. Got my research started and now im here. I realize brushings are not accurate. We live in Okc, Ok but are prepared to travel to whereever needed. Just wanting to be as proactive as possible.

    What do we do while waiting for brushing based on what we already know?

    Thanks,
    Josh

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