My Husband just diagnosed with CC and PSC

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This topic contains 6 replies, has 2 voices, and was last updated by  KateHill 1 week, 5 days ago.

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  • #12526

    KateHill
    Participant

    Hello my name is Kate,
    I am reaching out from the U.S. I am desperately researching sites for information on CC. My husband was fine and then not fine. Three months ago he thought he had a stomach virus and then fast forward to jaundice, two ERCP surgeries to put stents in his liver and this week the devastating news that that cancer is throughout his bile duct system and has tendrils wrapping around his stomach. That said we are told he is not a candidate for a liver transplant, not a candidate for resection so on our only option is the standard “play book” chemotherapy which appears to be the same used all over the globe. From reading the introduction posts it seems we are not alone with the devastating onset of this disease. I am hoping to get as much information and advice as I can and it goes without saying but I will say it, I am so sorry for everyone who is going through this terrible time.

    Kind Regards, Kate

    #12540

    Helen_ammf
    Moderator

    Dear Kate

    All of us at AMMF are so sorry to learn that your husband has been diagnosed with inoperable cholangiocarcinoma, and that you are having such a hard time …

    Here in the UK, liver transplantation is possible where PSC is advanced, but only where there is no trace of CCA. Once CCA has been diagnosed, which happens so often with PSC, then transplantion would no longer be an option. And, of course, despite the success of liver transplantion for CCA under the Mayo protocol in the US (albeit under a very selective and difficult protocol) liver transplantation for CCA is not allowed here in the UK. You are right, in that the global first line standard of treatment for those with inoperable CCA now is the Gemcitabine/Cisplatin chemotherapy combination.

    However, following on from that there are 2nd line treatments beginning to be investigated, and there are trials for targeted therapies. So, it might be worth your husband requesting that his cancer is screened for gene abnormalities (molecular profiling) to see what targetted therapies he might be suitable for, if any, in due course.

    For more information on molecular screening, see: http://sarahcannonresearch.co.uk/molecular-profiling/personalised-medicine/

    This link will take you to a list of the clinical trials open or soon to open here in the UK, including target therapy ones: http://ammf.org.uk/clinical-trials/

    If there is anything else you think we can help with, please come back and post again …

    With our best wishes to you and your husband

    Helen

    Please note it is not appropriate for AMMF to give specific medical advice or recommendations, but we do have a wealth of experience and information which we are always willing to share, whenever possible.

    #12544

    KateHill
    Participant

    Dear Helen,
    Thank you so much for the links and for your kind words. We talked to the Oncologist about molecular testing and this seems to be the way to go. Also, it is helpful to understand what clinical trials are being done elsewhere in the world so we can do our research here in the U.S. We are reeling from the diagnosis with a cancer and a condition that we have never heard of before-so this help is worth its weight in gold.
    Thank you again!
    Kind Regards, Kate

    #12545

    Helen_ammf
    Moderator

    Good that your husband’s oncologist is on the ball re molecular testing, Kate.

    It would be very useful for you to know what gene abnormalities are involved and might be driving the tumour so that a suitable targetted therapy can then be selected. (As I said previously, here in the UK, patients would usually have to undergo the standard treatment before embarking on any of the targeted therapies, as a trial or otherwise.)

    Unfortunately your phrase, “We are reeling from the diagnosis with a cancer and a condition that we have never heard of before” is one many of us can relate to only too well …

    Do come back and post again when you’re ready, and ask any questions you have – we’ll always try to help if we can!

    Helen

    Please note it is not appropriate for AMMF to give specific medical advice or recommendations, but we do have a wealth of experience and information which we are always willing to share, whenever possible.

    #12779

    KateHill
    Participant

    Dear Helen,
    Thought I would check back in. My husband had the first infusion of Gem/Cis and we ended up in the ER two days later because he had a massive infection which caused him to go jaundiced again and as a result of it had to have an emergency stent replacement. The second infusion was fine (last week and this week is a week off). The surgeon told us that they can only put narrow stents in my husband’s liver because the PSC has done too much damage and the left side of his liver is inaccessible due to scarring. That said, he is reluctant to put permanent stents in the right side because he said if he does that there will be no recourse if jaundice occurs again. Do you know anything about this? It seems we are locked into a cycle of temporary stent replacements if/when jaundice occurs? Not sure if other people on this site have permanent stents or the plastic temporary ones? I understand he has the double whammy of PSC and CCA so again just trying to educate myself.
    Thank you very much-Kind Regards, Kate

    #12785

    Helen_ammf
    Moderator

    I’m so sorry your husband is having such a hard time, Kate. The complications of his PSC are obviously making his treatment much more difficult …

    As far as the stents are concerned, it’s hard to comment on what your husband’s consultant has said other than whilst it is true the metal ones are generally considered more durable, these can get blocked in the same way as the other type. If a stent starts to block, then bacteria can build up and antibiotics and/or stent replacement would be needed. But once a metal stent has been in place for a little while they are not easy to replace (they’re a type of mesh material which tissue can grow through), so we can only assume that this recommendation is from the consultant’s experience and he is looking to ensure he can manage your husband’s future needs as well as possible.

    Has Ursodeoxycholic Acid been suggested? This is sometimes prescribed here in the UK to keep stents clear for as long as possible, as it keeps the bile a little thinner so it passes through the stent/s more easily. If your husband isn’t on this, it might just be worth asking about.

    Kindest regards to you both.

    Helen

    Please note it is not appropriate for AMMF to give specific medical advice or recommendations, but we do have a wealth of experience and information which we are always willing to share, whenever possible.

    #12908

    KateHill
    Participant

    Thank you for this. Will talk to the surgeon and ask him about it.

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