Viewing 11 posts - 1 through 11 (of 11 total)
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  • #45730
    raye
    Member

    Raye here.

    I had the Mayo transplant protocol performed in Rochester MN and I’m almost 3 years out from the surgery and doing fine so far. If it was not for the live donor transplant graciously provided by my oldest daughter Jennifer I have my doubts I would be here today. It was very close for my survival up to surgery since I constantly battled malnutrition and jaundice 24/7, and there was practically ‘nothing’ left of any muscle mass on my body because of this.

    The live donor transplant got me back on track within two weeks and I’ve been great ever since, even though the malnutrition effects impeded me for some time after the operation. But I’m here and I consider myself very fortunate.

    The live donor transplant has been used for CC at the UBC hospital in Vancouver and recently a live donor was accomplished at McGill University Hospital in Montreal. These are a great leap from when I was diagnosed in my province of Ontario 4 years ago where I was denied the operation and a live donor. Only through our efforts here at home and through applications to our health system in Ontario did we get the opportunity and the funding to go to the Mayo Clinic in Rochester MN.

    The lack of donations for transplants is very low here in Canada and I don’t know why with the advertising the government and hospitals provide.

    Live donor permission may be the only way to go for any type of transplants in Canada when the governments and medical associations change their outlook on helping transplant patients.

    Merry Christmas everybody!!

    #45729
    marions
    Moderator

    I agree, Helen. Every patient touched by this disease should resources available. It is a rare cancer in comparison to other major cancers however, it still should receive the same recognition, as all others do. And, that is something all of us are working toward.
    Hugs to you,
    Marion

    #45728
    gavin
    Moderator

    Thank you Helen!

    Gavin

    #45727

    Thank you Marion!

    We hope that, in time, the AMMF site will provide a comprehensive source of information on all things cc in the UK, something that is so badly needed at the moment.

    And Gavin, we will get a copy of the newsletter in the post for your mum as soon as possible …

    Helen x

    #45726
    marions
    Moderator

    Hi Helen. I love your website. Great job. You are providing a terrific service to all and especially to the patients in the U K.
    Best wishes,
    Marion

    #45725
    gavin
    Moderator

    Hi Helen,

    Thanks for that. The website version of the newsletter is fine for me as I can read it there, but a printed copy woul be good for my mum as she has no internet access. I will email you my address. Thanks again for this.

    Best wishes,

    Gavin

    #45724

    Oh, thank you Gavin.

    Let me know if you would like a printed version of the newsletter and I’ll put one in the post to you …

    Helen

    #45723
    gavin
    Moderator

    Hi Helen,

    Thank you for this, and I love your winter newsletter on your site as well!

    Best wishes,

    Gavin

    #45722
    jathy1125
    Participant

    Good morning-Every time I read about transplant in a controversial sentence I get my blood boiling!! I am a cc survivor because of a transplant. What can I say it works. My tumor was inoperable and this was only hope. Barnes- Jewish just openned a new transplant center and was quoted in paper as needing one because it is one of the “few cholangiocarcinoma centers in the nation”!! We are getting press. Kinda of interesting about gall bladder comment because they took mine along with liver!! We must pursue aggresively transplantion!! Cathy

    #45721
    marions
    Moderator

    Hi Helen….Thanks so much for posting this. This great post may open the door to some hot debates.

    Here are my thoughts:

    Presently, only a select few are eligible for this protocol.

    As far as I know, the overall survival with transplantation is significantly higher than those with resection or chemotherapy treatment.

    Additionally, those PSC patients in the very early stages of this disease have been given the best chance of survival.

    “The Mayo Clinic protocol involves careful selection of patients with early stage CCA which is either unresectable or arising in the setting of underlying PSC. Vascular encasement of the hilar vessels is not a contraindication to transplantation. The upper limit of tumor size is 3 cm, and there must be no evidence of intra- or extrahepatic metastases. The protocol specifically excludes patients with intrahepatic CCA or gallbladder involvement.”

    These are my thoughts:

    Procedure is costly as are the anti rejection drugs.

    The US has a significant higher rate of donors than the U K.

    Life donors increasingly step forward.

    I agree in that

    #4498

    The Mayo Clinic have recently highlighted the successful outcomes they have been achieving with liver transplantation in selected cholangiocarcinoma patients.

    AMMF (the UK’s cholangiocarcinoma charity) has looked into the situation in the UK and the following is the comment that has just been posted in Latest News on AMMF’s website:

    “The Mayo Clinic in the USA is performing liver transplantation for cholangiocarcinoma

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