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Hi.. 5 years post SCT following ALL

Hi.. Thought I would introduce myself. I am about 51/2 years post SCT following treatment for ALL. Doing fine all things considered. Had a bit of a bumpy ride early on but now only thing that is not back to normal is my immune system. My lymphocytes aren't great at producing immunoglobulins so I am having to inject them (subcut) every two weeks myself. Hopefully they will recover but they took a bit of a battering post SCT when i was treated for EBV and I only got off cyclosporine for the last time in May 16 so early days yet.

Paul

Comments

  • Hi Paul, welcome to the forum.

    I'm 4 1/2 years post SCT following treatment for ALL, so just a year behind you. I'm glad all is fine with you and that progress is going in the right direction.

    I'm doing pretty well but still go to St Barts hospital in London every 3 months for regular monitoring. I have ongoing eye GvHD problems, so continue to be on ciclosporin to calms things down a bit.

    Take care,
    Cheers,
    Neil
  • Hi Paul,

    Welcome to the forum. I also had ALL and had my transplant in January 2013, so probably just before yours. I had some skin GvHD after my transplant which meant about another two years of ECP treatment, but that is long since finished. Thankfully my only treatment these days is penicillin tablets daily and annual checkups, which these days are more of a chat rather than a thorough medical consultation.

    Sorry to hear you're having problems with your immunoglobulin production but hopefully in time it will sort itself out and you can stop having to inject.

    Please chip in on the discussions on the forum where you can. It's good for patients approaching or in the early days of transplant to hear from those who have a few years post transplant under our belts.

    All the best,

    Steve
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