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

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  • #86749

    Hi Gavin,went to see my GP this afternoon Dr Murdoch , he talked to Mr Harrison but Mr Harrison did not know too much and said he would have to talk to the Profs . As I dealt with Prof Parks in the past I would have to deal with him again . SO Dr Murdoch is going to arrange a second opinion with Ediinburgh . So I’m waiting for word but D r Murdoch said not to have hopes too high but it’s something anyway ! Be in touch Donnie

    #86748
    dukenukem
    Member

    Lorraine and Donnie-

    I second what Lainy said.

    Also, it has been my unfortunate (and hopefully atypical) experience that some doctors have huge egos that prevent them from acknowledging that someone else may know more or be able to provide better treatment for the patient.

    Keep on doing what you are doing.

    Duke

    #86747
    lainy
    Participant

    Lorraine, I just wanted to say “GOOD FOR YOU”. You learned very quickly to listen to your gut. In just reading what you wrote from the beginning my mind kept saying it didn’t sound right. You and Donnie are sure a winning team.

    #86746
    lorraine-scotland
    Participant

    Hi,
    Thanks for all that information. and please thank Helen. At our last appointment with the Glasgow consultant we asked whether it would be best for Edinburgh to be dealing with my brother since they specialise in this area and the stenting has not been working. However, we were told that there was nothing Edinburgh could do that they were not doing. This did not sit well with me and It is a relief to hear that Professor Wigmore recommends Donnie is referred back to them. We will let you know how we get on.

    Lorraine

    #86745
    gavin
    Moderator

    Hi Donnie,

    Great to hear from you and welcome to the site. Why don’t you create your own username so that both you and your sister can both post here? I know that both of you are so welcome here and we will all help the 2 of you. I hear how frustrated you are with how everything is going for you right now, I would be too if I was in your shoes. Yes the fact that your tumour hasn’t grown and seems stable is good news and that is a good thing. But, as you say, the stent does not seem to be working as it should and this should be looked into as a matter of great importance in my opinion.

    I hear as well what you say re farce and the Glasgow Royal Infirmary, so lets change tact here and go back to Edinburgh. Prof Wigmore has advised that you get that referral back to his team so let’s do that.He obviously feels that he can help as that is what I got from what he said to Helen. Contact your gp tomorrow Donnie, get the referral done and go from there. If they can get that stent working again and get the bili down then we can move on to other treatment options once that is done.

    Keep coming back here Donnie.

    My best wishes to you,

    Gavin

    #86744
    lorraine-scotland
    Participant

    Hello Donnie , Lorraine’s brother here . Thanx for info on my behalf , it’s a year now since I was diagnosed with CC. On positive side my tumour hasn’t grown but on negative side caused havoc with my digestive system . I have been currently back and forward to glasgow royal infirmary to have my stents moved and unblocked through endoscopies . Looks like the stenting isn’t working , my bilirubin currently is at 209 with the associated conditions connected with high bilirubin levels. It’s all become frustrating to extent of being farcical. Is there anything else that can be done? Dread consequences at moment if cancer starts to grow! Have dealt with Edinburgh in past and have met prof Wigmore but he’s never been my consultant the last time I was in Edinburgh was about October of last year , I will contact my GP with view to returning to edinburgh .Once again thanx for help and info and I’ll be in touch donnie

    #86743
    gavin
    Moderator
    #86742
    gavin
    Moderator

    Hi Lorraine,

    I just heard back from Helen tonight and this is what she had to say.

    “I’ve been in touch with Prof Wigmore at Edinburgh Royal Infirmary on behalf of your patient.
    He suggests that this very much sounds like the stent isn’t working and the first thing the patient should do is ask their GP for a referral back to Edinburgh.
    Prof Wigmore is away next week so he suggests the GP refers the patient to Mr Ewen Harrison who will be on duty for HPB during his absence.

    Mr Harrison is Clinical Senior Lecturer and Honorary Consultant Surgeon, these are his various contact details.
    Work: +44 (0)131 242 3616 (Susan Keggie, Academic Secretary)
    Work: +44 (0)131 242 3661 (Valerie Georgiou, Clinical Secretary)
    Fax: +44 (0)131 242 3617 (Academic Office)
    Email: ewen.harrison@ed.ac.uk
    Stent problems usual need prompt attention, so this patient should get on to this asap, and once that has been sorted then they can pursue the chemo or no chemo situation.”

    Prof Wigmore confirms what I was thinking and I would urge your brother to speak with his GP tomorrow to get the ball rolling with the referral to Ewen Harrison. The quicker all of this can be done the better I would argue. I have met Prof Wigmore before and he is very experienced in dealing with CC patients. I met him at the SHBPN conference that was run in Dundee last year and he gave 2 presentations there. I would say that your brother will be in very good hands if he is being treated by Prof Wigmore.

    Let me know how this goes etc then we can look at further options later.

    Hope all of that is of use to you and your brother.

    Gavin

    #86741
    gavin
    Moderator

    Hi Lorraine,

    You’re most welcome. Reason I ask about your brother travelling to Manchester as consulting with Prof Juan Valle at the Christie in Manchester may be an option. Here is a link –

    http://www.christie.nhs.uk/about-the-christie/whos-who/our-consultants/juan-valle.aspx

    Juan is very experienced in dealing with patients with CC and I know that he has treated quite a few members here that are from the UK. He is also the vice chair of the Medical Advisory Board here at the Cholangiocarcinoma Foundation and has also published much research about CC.

    http://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/advisory-boards/medical-advisory-board/

    Will let you know when I hear more.

    Best wishes,

    Gavin

    #86740
    lorraine-scotland
    Participant

    Hi,

    Thanks very much.

    Lorraine

    #86739
    gavin
    Moderator

    Hi Lorraine,

    Just to let you know, I heard back from Helen and she is going to do some digging around and will get back to me as soon as she can. Once I hear more I will let you know. Thanks for the info on the bili numbers as well.

    Best wishes,

    Gavin

    #86738
    lorraine-scotland
    Participant

    Hi,

    When my my brother got the metal stent fitted his bilirubin soared to 300. The following week it came down to 200. This week it has gone up by 5 so it is more or less stayed the same. He gets his bloods checked every Tuesdaty by the GP and the results on Wednesday. He would consider going to Manchester for a second opinion. We appreciate your support. Thanks again.

    Lorraine

    #86737
    gavin
    Moderator

    Lorraine,

    Has the bili level been at 200 or so constantly since the metal stent was placed before Christmas? I just got in touch with Helen and will get back to you when I hear more. How do you think your brother would feel about travelling to Manchester for a second opinion?

    And Lainy is right about her gut feelings instinct.

    My best to you and your brother,

    Gavin

    #86736
    lainy
    Participant

    Lorraine, I know this may sound strange, but so many have discovered to listen to their gut feelings. Listening to what you and your brother really feel is you best guideline. I feel like I graduated from Gut 101! It has never steered me wrong. Definitely go for that 2nd opinion! Best of luck.

    #86735
    lorraine-scotland
    Participant

    Hi. Thanks for your reply. My brother got his diagnosis at Edinburgh Royal Infirmary . At the beginning , he moved between Glasgow Royal Infirmary and Edinburgh Royal Infirmary. It is now only Glasgow who are dealing with him. I do not get the impression that the doctors in Glasgow have a great deal of experience with CC although we have never asked them this question directly. I think my brother would like a second opinion and we would appreciate any advice from yourself or Helen from AMMF. Just before Christmas one of the plastic stents was replaced with a metal one. Lorraine

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