sil

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  • in reply to: New ICC Diagnosis — Looking for Advice #73238
    sil
    Member

    Hi….this man is based in the UK but will review documents & scans online. He is considered to be a world expert in CC, he is on the American Board for biliary illness. He is regarded as the “last resort man”, I know that doesn’t sound great but when other “experts” have ruled out treatment he is sent the cases for final review. My sister in law was diagnosed with stage 4 intrahepatic cc aged 41 and 4 surgeons reviewed her scans and said treatment wasn’t viable. Prof Lodge intervened and said that he would perform a laporoscopy to be absolutely sure that resection wasn’t an option. He is a “piping” expert and this is his field. Sadly, in our case there were other complications & resection wasn’t possible.

    I’d rather you had his details than not….his secretary’s details are on the link and he is good at responding promptly.

    http://www.spirehealthcare.com/leeds/prof-peter-lodge/profile/

    Good luck – I hope this helps.

    in reply to: New Member – sister in law, only 40 with cc #71894
    sil
    Member

    Dear All

    I wanted to thank you all for your kind words and information. I would like to provide an update and let you know that my sister in law has deteriorated rapidly and her time will end soon. The CC was too far advanced when diagnosed for any constructive intervention to take place. The Hospice team have been wonderful, it is such a caring and supportive environment for patient and their family and friend support network.

    When I glanced at the new introductions board I had a question – is there an area on this site that lists CC specialists by region? It might help if visitors to the site could access this information – or maybe this information is more appropriate on another site? Just a thought. Once you have been touched by the CC journey it seems a waste to let knowledge of specialists etc not to be shared to spare those newly diagnosed from having to start from scratch. For example, Prof Lodge in Leeds, expert in CC – how do people find such experts if they are not referred? It’s just a thought.

    x

    in reply to: New Member – sister in law, only 40 with cc #71884
    sil
    Member

    Hi All

    Thank you for your kind messages – I have been offline for a few weeks. Your information is very useful.

    The update isn’t very good, I’m afraid – she has deteriorated quite significantly. The pain meds are causing serious issues with her bowels – are you aware of an injection that can alleviate the constipation, apparently it’s expensive but in certain situations is can be very beneficial? The laxatives aren’t working effectively and other options are too risky due to the ascites (very swollen abdomen) and other complications. Her weight loss & vomiting continues and she has been moved into a hospice in an attempt to control the pain and manage the associated complications. The outlook isn’t positive but one day at a time is all you can do. It’s such a painful and traumatic illness.

    I’ll ask the doctor for the name of the injection and post it online for your reference.

    Many thanks, xx

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