Discussion Board Forums Introductions! Introduction My brother’s fight with Cholangiocarcinoma

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  • #86734
    gavin
    Moderator

    Sorry, forgot this link for you as well Lorraine,

    http://www.shpbn.scot.nhs.uk/index.php/about-shpbn

    Gavin

    #86733
    gavin
    Moderator

    Hi Lorraine,

    Welcome to the site. Sorry that you had to find us all here and I’m sorry to hear about your brother. But you are so in the best place for support and help and will get loads for all of us so I am glad that you have joined in with us here. I too am from Scotland, in Dundee and my dad was diagnosed and treated here at Ninewells.

    Can I ask where your brother was diagnosed and treated please? The more info you can give us the better. What you desrcibe re surgery starting and having to be aborted due to the spreading is unfortunately quite common. My dad wasn’t able to have surgery due to late diagnosis and he also wasn’t able to undergo chemo at a later date due to the ducts being blocked, he would not have been able to handle chemo at that point.

    I assume that the stents that they have tried to place have been plastic ones and not metal ones? Plastic ones are temporary and metal ones are permanent, my dad had the metal one and that worked very well for him. How do you think that your brother would feel about seeking a further opinion?

    Here is a link to AMMF and you will find a ton of UK specific info on it –

    http://www.ammf.org.uk/

    As I understand it, patients are entitled to a second opinion under the NHS in Scotland so he should be able to get one. If you give me more info then I can contact Helen who runs AMMF on your behalf if you like?

    Also, do you know how experienced the doctors who are treating your brother are with dealing with patients with CC?

    I know it can be hard to stay positive, but please know that here you are around people who care and will do what they can to help. We are here for you.

    My best wishes to you and your brother,

    Gavin

    #86732
    lainy
    Participant

    Dear Lorraine, welcome to the best place to be for CC. We are one dynamite family! I am sorry to read about your brother and my first reaction is to get a 2nd / 3rd opinion. Usually when stents are placed the bile ducts open up rather quickly. The yellow hue can last awhile as it is in the skin almost like a dye. To me, when Doctor acts like they are giving up….time to get another opinion or 2. Make sure your Doctor and Hospital have had experience with CC, that is of the utmost importance. Here are some sites that may be helpful to you.

    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/

    #10949
    lorraine-scotland
    Participant

    Hi to you all. My 56 year old brother was diagnosed with CC in April 2014. At first, we thought they could do a resection but when they started to operate on my brother the surgeon realised that it had spread to the liver and the operation was not possible. The tumour is in the part of the bile duct which is in the liver. Stents have been put in to help but have not been very successful. My brother has been in and out of hospital about 7 times to get stents unblocked to relieve his jaundice. At the moment, his bilirubin level is over 200. On the positive side, we have been told the tumour is stable. However, if they are unable to get the bilirubin down to under 50 chemotherapy will not be an option. We are trying to stay positive but it is really hard as the doctors are telling us that there is nothing else they can do. Has anybody else out there had a similar problem with jaundice and high bilirubin levels? Any suggestions or advice would be appreciated. Thanks xx

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