Klatskin tumor help and anniversary

Discussion Board Forums Introductions! Klatskin tumor help and anniversary

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  • #36911
    mlepp0416
    Spectator

    Raye:

    Thanks for sharing. My husband and I are headed to Mayo in a bit more than two weeks now. We’re hoping for them to be able to place an internal stent in Tom’s liver. The doc’s here in Green Bay Wisconsin have been unsuccessful to date.

    I don’t think he is in any why shape or form a candidate for a liver transplant so all we are hoping for is for them to place a internal stent.

    You give inspiration to others.

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret (My Husband and Cholangiocarcinoma)

    #36910
    lalupes
    Spectator

    Congratulations, Raye!! I look forward to reading your story, too. Very much. Please let us know when your article’s ready to share.

    Thank you!!
    Julia

    #36909
    marions
    Moderator

    Ray….I just knew there would be an interesting story behind this. I am looking forward to a more detailed report. I know that many will benefit from your knowledge and experience. Thanks, Ray.
    Best wishes,
    Marion

    #36908
    lainy
    Spectator

    Hi Raye and CONGRATULATIONS on both your Anniversaries. You are obviously another Miracle Man!

    #36907
    raye
    Member

    Quite simply my tumor grew in an unusual manner. Instead of growing from the inner lining of the bile duct outward, it grew from the outside inward. In essence it provided more pressure right at the bifurcation of the ducts and closed off quite rapidly compared to other K tumors. I almost instantly went from normal functions one day to light bulb yellow skin , pale stools, and coca-cola urine in 24 hours. It wasn’t a slow process that you could observe changing every day. It was Boom!! I received a biopsy brushing within two weeks, which is good in Canada ( ha ha ) and got down to business with treatment options within 5 weeks. I got to the Mayo clinic for my evaluation when the tumor was only 1.5 cm square. I believe that was the key factor in my success was the early diagnosis and treatment. I asked a surgeon back at my specialist’s hospital who knew someone in the Liver Transplant clinic at the Mayo who was also a Canadian doctor, and Helen and I headed for Minnesota as soon as possible for the evaluation. I DID NOT wait for my government health plan authorization to send me and fund the evaluation. I paid for it myself. That was another thing that worked in my favor, I went on my own accord. I didn’t wait and waste precious time.

    In all fairness to social medicine, when I was admitted to the Mayo protocol my government health system agreed to send me since this procedure and surgery was not available at that time in Canada due to the shortage of donor livers. But, the government plan arranged the funding with the Mayo and handled my plans with the Mayo Clinic. All went well with their efforts.

    One of these days, and soon, I intend to compose an article on my CC so all can read, and it won’t be sugar coated. People need to know what we go through with this GI cancer. It ain’t nice.

    #36906
    marions
    Moderator

    Hello Raye….It is always great to hear from you. Congratulations on both, the aniversary and of course your great success with the transplant. Ray, I don’t recall you every sharing your early detection with us. How did that come about?
    Best wishes coming your way,
    Marion

    #3360
    raye
    Member

    I wanted to remind those who have any questions on Klatskin tumors and information on liver transplant therapy as a solution that they can e-mail me anytime or phone me at 1-269-598-1861.

    So far I’m a CC survivor, and for those who don’t know my history I am a Klatskin tumor survivor and liver transplant patient. As of March 20th I celebrated both my 34th wedding anniversary and the second anniversary of my liver transplant. My CA19-9 marker is 40 and blood work and kidney functions are all normal. I’m very fortunate to be here because of an early diagnosis of the tumor and excellent care at the Mayo Clinic.

    For those of you in Canada I can help point you to several US centres for treatment such as I received and also the McGill University Hospital in Montreal Quebec who has now been appointed as a centre for CC in Canada.

    Call anytime.

    Raye

Viewing 7 posts - 1 through 7 (of 7 total)
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