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Viewing 6 posts - 721 through 726 (of 726 total)
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  • in reply to: Babies, babies everywhere #34257
    mlepp0416
    Participant

    Kris:

    I’m new to this web site, but remember this, NO ONE has an expiration date stamped on the bottom of their feet! Never take NO for an answer! My husband Tom is fighting CC after a liver resection, 19 months later a new inoperable tumor appeared in the remaining rt. lobe of the liver. We are fighting it together. Keep the faith and go with God.
    Margaret

    in reply to: My Husband and Cholangiocarcinoma #34376
    mlepp0416
    Participant

    Darla,

    I know where Plymouth is, it’s not too far from Green Bay! Based on your post, I am assuming that Jim has passed? If so, I’m so very sorry for you and you are right “one day at a time”. If Jim has passed, how long between diagnosis and his passing? I’m trying to get an estimate of how much time Tom really has, given his high bilirubin level and his inoperable tumor. I’m trying to ‘Keep the faith” but also trying to be realistic.

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #34374
    mlepp0416
    Participant

    Darla:

    Where in Wisconsin are you? Thanks for your thoughts and concern. This is a wonderful forum and if nothing else is great for information and for ‘peace of mind’ for us caregivers of our loved ones who have this dreadful cancer.

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #34372
    mlepp0416
    Participant

    Lainy:

    I have been doing a lot of research and cyber knife was one of the things that I did disucss with the doctors. However, with that being said, the tumor is wrapped around not only the confluence of the bile duct tree, but also the main blood vessel of the remaining right lobe of the liver, therefore that is not even an option that they would consider. It would be too dangerous and fatal per what I have been told, given that the main blood vessel is involved.

    We have discussed a liver transplant bit given his other health issues, he would not survive that operation, and liver cancer patients are not given liver transplants because liver cancer often recurres and can metastities (sp).

    I also found a lot of other procedures but most of what I discovered is something that they don’t do here in Green Bay, or it’s too risky, not enough data, etc. That and given the ‘placement’ of the tumor with the blood vessel involvement, it’s just too risky.

    Tom is doing a lot of sleeping these days and all I’m doing now is praying that he does not suffer, praying that the radiation shrinks the tumor enough so that they can get a stent in to relieve the high bilirubin levels that he has.

    Thanks for your thoughts and concerns.

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #34370
    mlepp0416
    Participant

    Thanks to everyone for their comments/advice. We have considered Mayo, however it’s just too far away and I have to work else we have nothing to live on and I won’t let him be there by himself. He was in Milwaukee for three weeks and I was there with him the entire time.

    Part of the current issue is that with the bile duct blocked by the tumor they can’t give him chemo because he will become toxic and that alone will kill him.

    Until the radiation shrinks the tumor we have to trust that his angel is watching over him..once they get a pinhole, Dr. Dempsey will be able to get a long enough stent in via the chest wall.

    Thanks again,

    Margaret

    in reply to: Bilirubin of 19 – What to do? #33831
    mlepp0416
    Participant

    Hi BriansWife:
    I’m new to this forum and just posted my husband’s (Tom) journey with CC. Tom’s bilirubin level is 24.7 and the only thing he has is a external drain, undergoing radiation to the tumor, can’t take chemo becuase the liver duct is blocked by the tumor. I’m going to ask the doc’s why they can’t use the bili lights that they use for babies…Just a thought, don’t know if they use them on adults but so far not one of his docs suggested it. Good ludk to your hubby, he will be in my thoughts and you also.
    Margaret

Viewing 6 posts - 721 through 726 (of 726 total)