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Donor top up treatment?

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beckybrambeckybram Total Reaction Points: 20
Hi all I had my transplant in november 2015 my chimerism hasn't been great so had my first DLI donor top up at the end of january this year, I am having my next top up in a few weeks time as my results are 78% - 16%(t cells) and 98% doesn't mean a lot to me but they said the t cells defiantly need to be higher.
Has anyone else had this treatment, i have asked before but only had a reply from a nurse specialist so maybe there a few more of you now.
If you have had the treatment how long did it take to work and how many top ups did you have, my consultant has said 4 is the max they will do but they are hopeful the next one will jump start those cells

Best Answer

  • EDawson Total Reaction Points: 6
    Answer ✓
    Hi Becky,

    My husband had 2 DLIs to try and top him up (his figures were very similar to yours).
    After the second, he got GVHD so they stopped them.

    It's coming up to 2 years since that second top up and the chimerism has just continued to creep up so they never looked at re-topping (it is in the 90s overall now and they're happy with that).

    I'm not sure about the four maximum thing....my understanding was they had lots of DLIs in the freezer (!) and would keep going until the chimerism improved or GVHD halted it?

    I would imagine it's different for everyone depending on amount given etc but we saw a jump after the second and, if that's what your team are hoping for, then fingers crossed that will work for you too!

    Hope it all hoes well; sending good wishes!

    Millie

Answers

  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Hi Becky,

    I know there are a few patients on here who have had DLI treatments so hopefully some of them will be able to give you an insight from a patients perspective. There are a few threads that have mentioned to-ups before.

    How are you feeling in yourself? Whilst your chimerism is low I wondered whether your blood is otherwise doing what it needs to and you are feeling well in yourself?

    All the best,

    Steve
  • beckybrambeckybram Total Reaction Points: 20
    Hi Steve and Millie

    My blood is not doing too badly I do need immunoglobulins monthly and b12 and folic acid but the results are mostly within range, Like most I suffer with fatigue and have other medical issues, lymphodema, early menopause, joint problems, nausea and so on.

    Good to hear your husband is doing well Millie, Im hoping my next top up will have the same effect and starts a mild GVHD to show it is working

    Best wishes
    Beckyb
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