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DLI for late relapsed MDS

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Kimbers197 Total Reaction Points: 0
Hi, I am new here and posting on behalf of my Dad. He has just been diagnosed with a relapse of MDS three and a half years post allo transplant. We are devastated to say the least as he has been doing so well and tolerated transplant very well also. We are waiting for further tests on his gut to see if his gut problem is gvhd if it isn't they will do a DLI. There is apparently only a 40% chance of this working and just wondered if anyone had experience of DLI for relapsed disease?

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  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi there and welcome to the forum, I'm one of the community champions here and a transplant patient myself. I can imagine how devastating this news is, particularly if your dad has been doing so well and was probably more or less recovered from his transplant at three and a half years.

    There have been quite a few posts recently about DLI or Donor Lymphocyte Infusion so its a process that is possibly more common than you might think. From what I can tell its usually a method of giving things a kick start where cell counts aren't picking up or the chimerism is low. It is usually preceded by a low dose of chemotheraphy which may be enough to get you dad back into remission and then the DLI to get things going again.

    There's a bit of information on the Anthony Nolan website about the process and it indicates that it can be used as a treatment if your original condition has returned and of course the patient and families team will be able to help if you contact them.

    https://www.anthonynolan.org/patients-and-families/recovery-first-year/having-donor-lymphocyte-infusion-dli

    The page gives and indication of one of the risks of DLI being GvHD, so that will be why the medical team want to establish whether he already has it or not. If he does there may be other options to explore.

    I hope this helps a little but it may be worth having a read through some of the posts on the forum as I'm sure others have had similar experiences, and they will hopefully post a reply to you on this thread.

    Please let us know how your dad gets on and keep in touch for support as you need it.

    All the best,

    Steve
  • Kimbers197 Total Reaction Points: 0
    Thank you so much for your reply, I believe I read your story earlier and you suffered from MDS Also? It has been a huge shock to us all we naively thought he was out of the woods. Thanks for the info RE DLI I guess we just have to hope and pray he is one the lucky ones and gets through it again.
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi there, no my transplant was for ALL.

    I did a search on the forum for DLI and there is a thread from someone who is exxactly in your dads situation and had DLI after a relapse with responses from a couple more people in the same situation, so it shows you are not alone.

    https://www.anthonynolan.org/patients-and-families/anthony-nolan-patients-families-forum#/discussion/comment/1133

    Fingers crossed he can have the same treatment and it's successful.

    All the best,

    Steve
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 57
    Hi
    I am the nurse specialist in the patient services team. Thank you for posting, I am sorry that your dad has relapsed, I am sure it was a shock for you all

    If your dad has not had or had only a small amount of GvHD that has now resolved DLI is a treatment option for relapse. Sometimes it is with low dose chemo and sometimes on its own. The hope is that the DLI will cause some GvHD which will then cause GvL. The GvL will hopefully eradicate any disease and get your dad back in to remission. Any GvH he has will need to be controlled with medications. I have worked with patients who have had this treatment and it can be successful. It depends on the level of relapse and what his chimerism is also.

    His transplant team will offer him the best treatment option and it is very reassuring that he has had 3 and a half years in remission. This can be a good sign that a remission can be gained again.

    I hope it goes well and please keep in touch with his progress.

    BW
    Hayley
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