Update on failed SCT

This topic contains 7 replies, has 7 voices, and was last updated by  san 11 years, 2 months ago.

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #103286

    christinepugh
    Participant

    Hi All
    I just wanted to update you on Chris's SCT as even further evidence of the individuality of Myeloma from person to person. I started a discussion back in May after we were given the news that Chris's transplant had been a failure after only 50 something days.
    His pp's were at 19/20 and am happy to report that's of Friday they are 5.7. The last reading was a 60% drop from the one before. We along with our consultant are a bit baffled as to why 4 months after the SCT it should decide to drop so much. They think it may go further still. He is on no medication at all. He is working 3 days a week and feels really good apart from the odd off day.
    When we think how devastated we were back in May I hope our consultant will look at Chris's case and maybe allow patients more time to recover before making declarations.
    Anyway, we have celebrated and rejoiced and are happy that now he has shown some response things like a mini allo will now be back on the table to discuss at some point as Chris has a perfect unrelated match somewhere in Birmingham.
    We've had a great summer with a holiday in Portugal and the most amazing weekend in Paris with four fabulous friends one of whom had cycled from London to Paris to raise funds for Myeloma UK ( 5k in the end)
    Our son Cameron has somehow managed to get ten GCSE's despite all of this going on at the most crucial time for him which I think shows a quality in him that should stand him in great stead for the future.

    Life , for the moment anyway, appears as normal as it can be and Chris looking like Chris again ! He said he forgot he was ill in Paris for the first time in a long time.
    So , my message is never give up, the men in white coats don't know everything all of the time. The human body is an amazing thing and we try and predict how it will behave but we never really know.

    Christine Xx

    Our blog is christhebarbers.wordpress.com

    #103287

    mhnevill
    Participant

    Hi Christine

    I'm so glad to hear the news about Chris. It just goes to show and I'm sure it will encourage others. Long may this phase in his MM last!

    So glad to hear your son did so well in spite of everything going on.

    I know what Chris means when he said,in Paris,he could forget MM. While we were up in the Lakes last week I said to my husband "I don't feel as if I have a terminal illness!" Good to be able to put it on back burner from time to time. I think that is why some folk disappear from the Site when they are in remission.

    Love to you both.

    Mavis x

    Keep strong both of you.

    #103289

    meganjane
    Participant

    Hi Christine,

    That is wonderful news 🙂

    I am also glad to hear Chris is back at work on a regular basis, has his neuropathy improved or has he just got better at ignoring it?

    Megan

    #103290

    Mothas
    Participant

    Christine that's great news. I wonder if there might have been an error with his previous blood tests. It can happen.

    #103291

    rebeccaR
    Participant

    Great news Christine, the fact that he is having a continued response so long after transplant is apparently a very good indicator of a longer term remission – there is an article on it on the Myloema Beacon.
    Enjoy.

    Rebecca

    #103293

    san
    Participant

    Wonderful news, so pleased for you all 😀 stay well and happy, San x

    #103292

    bandityoga
    Participant

    Hi Christine

    Wonderful news. Consultant told my husband he wouldn't walk again and he is now walking with a zimmer and going from strength to strength. Myeloma treatment had to be stopped early to allow bed sore to heal but he has had no treatment since April and although his light chains are rising slowly, he is on no treatment at present.

    I believe in the power of prayer which has been a comfort to me and miracles do happen.

    Enjoy life.

    Maureen x

    #103288

    christinepugh
    Participant

    Thanks for the messages guys, much appreciated.

    Megan, his neuropathy is better than it was but it's still there in his feet.Good days and bad. He gradually weaned himself off the pregablin as he felt it wasnt really giving him relief from the pain but felt really foggy. He reduced down to 150g per day and said it didnt make the pain didnt increase yet felt much better in himself.

    Maureen – great to hear about your husband, I hope he goes from strength to strength.

    Christine XX

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