Mary

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  • #105779

    becka
    Participant

    Hi Lynne

    You are so recently diagnosed can imagine how overwhelmed you must feel. Do you think you could try to park the worry about SCT for now. You’ve a lot on your plate to deal with without adding something that’s not going to happen for months.

    The SCT is not pleasant there is no point in minimising it. However, neither is the treatment leading up to it and we manage that! In my case, it was so well worth it. In fact, I wouldnt hesitate if a second was needed. You have a major advantage when it comes to SCT . .your youth ! I was 56 when diagnosed, 58 now.

    You mentioned you were keeping an eye on your temp. .that to me is the way to go. Try to deal with what faces you on a daily basis. Let tomorrow take care of itself. Be eagle eyed for any infection, act fast if you suspect any, dont worry about asking your medical team questions or bringing to their attention anything you may feel is trivial, thats for them to decide. Keep notes, we’re all inclined to go blank when asked how we are, be as kind to yourself as your circumstances allow & drink plenty of fluids !

    I'm in Ireland so there are some differences in our treatment regimes but I’d be happy to try to answer any questions you might have. PM me if you’d prefer.

    Becka

    #105777

    becka
    Participant

    Hi Lynne

    I know exactly what you mean. I'm 2 yrs post SCT & taking Lenalidomide as maintenance.

    For a few days at the start of each cycle my face, particularly around hairline, reddens & burns as if sunburnt.

    Unpleasant but once doc said not to worry about it I dont. I'm very lucky to be in remission, back at wotk & feeling great. Can go hours now without thinking about myself. . . what a relief !

    Hope all goes well for you on your journey & you get a similar result.

    Becka

    #90737

    becka
    Participant

    Hi Onlyme

    2 weeks ago I completed 6 cycles of Velcade which I tolerated well with very positive results. Some neuropatic pain in my hands was a nuisance and fatigue made me an expert on daytime tv but I'm now officially in remission and due to start the SCT process next week.

    I know we all can have varying responses to any drug/treatment but I hope Velcade is as good to your Mum as it has been to me.

    Becka x

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