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  • #226
    thierry
    Participant

    Hello from Thierry from France !

    #227
    Pan
    Keymaster

    Bonjour et bienvenue, Thierry.

    I’m sorry for all the problems you had joining the forum.

    Can you tell us about the situation with LFS in France? Do you have much support there?

    #228
    thierry
    Participant

    Hello Pan
    No problem; it’s good now with forum; difficult to speak in english language!
    My family have LF syndrom; one sister, two children, my father, my mother, my 2 grandfather and my 2 grandmother dies with cancer; we don’t now if LF syndrom is coming from my mother or from my father.
    Now, I have me to a cancer since 2010 but I’m still alive and I’m fighting!
    Two of my child and a child of one of my child presents also the LF syndrom.
    LF syndrom was diagnostic 10 years ago in our family.
    In France, I never meet a doctor (surgeon?) who knows this syndrom except genetics surgeon! That’s incredible! They all told me that a surgeon can’t knows everything!
    So, the prevention is very difficult.
    I hope it would be better in a few months; genetics praticiens of Nantes hospital are going to plan IRM for all the body (from head to feet) for the patients with LF with a periodicity of one or two in a year; I think it’s not enough; I prefered one every 3 months!
    And what about in UK?
    Thierry

    #229
    Pan
    Keymaster

    Thiery, I am so sorry to hear about your family history. It is so hard to hear how much you have all suffered. But it is good that you are still fighting.

    And if you get stuck with English, remember: [i]Google translate est votre ami[/i]

    In England things are not so good with LFS tracking. I have written an article on a new protocol from North America here: http://www.tp53.co.uk/index.php/lfs-surveillance-protocol

    In this new protocol the periodicity of scans is much better than 1 or 2 a year. Maybe you should print this and take it to your genetics specialist in Nantes.

    For your cancer are you having chemo now or other treatment?

    #230
    Despina
    Participant

    Bonjour Thierry!

    Bienvenue!

    I am so sorry to hear that so many in your family have been diagnosed with LFS. I am also sorry to hear that you yourself are suffering with cancer. How are you and your family coping?

    It’s really good you have joined our forum, hopefully we can provide you with information and support.

    Despina

    #231
    Karen
    Participant

    Hello Thierry and welcome to the forum.

    It is good to hear from you and how you are treated with the condition in France please keep us informed with your progress. I think that there may be a research programme with full body MRI scans taking place at the moment in France as I e-mailed a contact a couple of months ago, perhaps this is what you are currently discussing with your doctor.
    At present we are not given full body MRI in the UK unless you pay for it yourself which I am currently looking into.

    I will be updating my page recently diagnosed with LFS again next week so hopefully will have some more information to add.

    Take Care

    Karen

    #234
    Verity
    Participant

    hi Thierry

    My genetic specialist at the Royal Marsden hospital in London is trying to set up a clinical trial involving full body MRI. The ethics comittee still need to pass it but once they do I have already been accepted onto it. I know my Genetisist works very closely with doctors in France so perhaps this MRI trail is a joint venture.

    Verity

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