Izzie

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  • #114170

    Izzie
    Participant

    Hi Rebecca – apologies for not replying earlier – but that is a measure of how ill I felt – couldn’t even be bothered to type – I am ashamed to say. Still feel no better really – nothing I can put my finger on – just general fatigue and some! When I try to explain it to people – they just don’t get it – don’t blame them!! I get your drift – it’s a case of just hang in there – but perhaps I am expecting too much. I have had a full blood count at my GPs and she has not been in touch – so I know everything must be fine.

    I generally just ask for my paraprotein levels as that’s the only thing I really understand – is there anything else I should be asking ie I hear people talking about light chains but do-not understand their relevance. If you could advise me – that would be great. Thanks for your time in replying I really appreciate it and yes would love to meet up sometime in the future – oh! By the way after receiving your text – the next morning I woke up to a pillow full of hair – tried to convince myself I wasn’t bothered – but I think deep down I am – must be indenial!!

    Regards and my very best wishes
    Izzie

    #111688

    Izzie
    Participant

    Hi Carol – lovely to hear from you. Yes I am on a clinical trial – thought it was the best way forward. Initially started off on Revlimid, cyclophosphamide and dexamethsone for 6 cycles and have am now just on my third cycle of velcade which I have by injection twice a week. They tell me they like them as low as possible – so I need about two/three at the same levels. I am under Doncaster/Sheffield hospital and asked them if I could go on holiday before I had my stem cell replacement. I feel my husband and I need a bit of sun on our backs – they said people do – would that mean that when the medication stops my paraproteins would start rising again and I would start feeling ill again? It seems I would be undoing all the good work of getting the little buggars to disappear!

    How wonderful that you had a paraprotein level that was undetectable – that would be music to my ears

    Izzie

Viewing 2 posts - 16 through 17 (of 17 total)