MM and AL amyloidosis

This topic contains 18 replies, has 8 voices, and was last updated by  Anonymous 11 years, 4 months ago.

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  • 13th June 2013 at 1:53 pm #105650

    akearon
    Participant

    Eve,
    Thank you so much, I have also received the information that I asked about as well as the option to contact Cinziaz which I will do. I can't tell you what it felt like to see such fast responses.

    Thank you

    Alan

    13th June 2013 at 4:20 pm #105651

    eve
    Participant

    Hi Alan

    No problem,was aware of time lapse ,you are about 9 to 10 hours in front ,so quick reply,but I see Cinzia has replied anyway,sorry for thinking you were a he Cinzia:-P

    You might be a long way away,but the world is getting smaller!!
    I know of someone who has Amyloidosis,and he has problems ,because of lack of people with it,only 600 a year here,plus the only hospital that deals with it is the Royal Free hospital in London,but I believe the treatment is more or less the same for people with Myeloma.

    Good luck I hope we here from you again. Eve

    11th July 2013 at 7:28 am #105653

    akearon
    Participant

    Pauline57 and Marc,
    Sorry to hear your news but and I mean but, don't despair. You didn't leave an email for a personal reply. I contacted Cinzia who ironically lives less then 3 km from me. She was a breath of fresh air amidst the fear. My Myeloma is fortunately early or around 10% and my AL was diagnosed after we thought I had gall bladder problems and found out that I had some large lymph nodes. When they tested them they found AL. I also have type 2 diabetes with good control. Recently I had a special MRI in Research and Development mode where they found that the heart has AL involvement which lead to a touch of Heart Failure for two months.

    I start Velcade next week and know that Cinzia has had good results with that Chemo. Do not read old things, if it's a year or more it's probably out of date Don't Google. Mayo Clinic, Boston Clinic etc. are reputable sites.

    11th July 2013 at 9:41 am #105654

    Anonymous

    Hi Alan
    Thanks for the reply. I, ve slept on the news and everything looks better after a coffee and cig ;).
    Shock over and fighting gloves back on! Lol
    Good to hear you're doing so well, if u don't mind can we keep in touch and swap storys 😉
    Seriously though thank you for replying and understanding.
    Keep healthy
    Pauline xx

    Ps. My e-mail is sarbec@btinternet.com

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