bbfranson

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  • in reply to: confused about lack of evidence of cc #18653
    bbfranson
    Participant

    Scott has had psc for about 15 years. It is the leading predisposing factor for CCa. It is treated with ursodiol, a synthetic bile that comes in pills. They suspect that ursodiol might slow down the psc, but there is no really effective treatment. Persons with psc usually go into liver failure over many years and then require a transplant. PSC is not an incredibly great diagnoses. PSC is usually less fatal than CCa, but I don’t consider it to be any more pleasant….. especially if he has a biliary drain.

    So, that was just the biggest downer of a post I have ever given.

    The upside of this is that transplant cures psc. If you catch it early enough, transplant with chemo/radiation is also a cure for CCa. (Transplant by itself for CCa is only successful 20% of the time. Chemo/radiation/hell increases the odds to 80%) I’m hoping that your dr is aware of this information and can help him either way.

    God Bless,
    Brenda

    in reply to: confused about lack of evidence of cc #18649
    bbfranson
    Participant

    Scott doesn’t have any masses and his cancer markers were also 0. His hepatologist did a brushing during his last ercp that came back positive for cancer cells. Since he also has primary sclerosing cholangitis, our understanding was that the only significant chance for survival was chemo, radiation and a transplant. There are only a few hospitals doing this for CCa, so it would be worth finding one and talking to the drs there. We are at the University of Utah. Our hepatologist is William Hutson. You can reach his staff at 801.581.2121.

    I would definitely take the implications of CCa very seriously, but the treatment is not something you want to take on a just in case, because we can basis. I highly recommend the 2nd, 3rd and maybe 4th opinions of dr’s who have dealt with CCa. It’s not something to play with and you don’t have the energy to listen to drs with only half a clue about it.

    God bless,

    Brenda

    in reply to: hi #18860
    bbfranson
    Participant

    Thanks all

    We’re currently #1 on the type A list for the Utah/Nevada region. We were called for transplant last week with a potential donor, but then the donor fell thru. If I wasn’t mental before all this started, I’ll surely be mental after.

    We’re grateful to be at the UHU because they will be using his liver and blood for research. They are looking for a more accurate marker for CC in order to diagnose it earlier.

    Meanwhile, we wait. Scott takes Xeloda to hopefully keep everything in check. I understand that compared to most chemo it is mild, but it really kicks his hiney.

    Thanks again and prayers for all,

    Brenda

    in reply to: hi #18855
    bbfranson
    Participant

    Thanks.

    I’ve been exploring the site a bit. Love the logo and it’s a nice format.

    I admit, I feel guilty after reading other people’s experiences with CC. Scott’s was found by chance from an ERCP for his primary sclerosing cholangitis. There’s no tumor, just cells; precancerous, really. They’ve not given him statistics or any indication that this protocol, copied from the Mayo, wouldn’t work. It’s not been a pleasant experience, but he should live.

    This site makes his diagnoses more real to me. The faces behind the statistics are more real. I’m sobered and feel pain and grief for everyone going thru this. It’s just so consuming.

    My thoughts and prayers are for everyone in this community.

    Brenda

Viewing 4 posts - 46 through 49 (of 49 total)