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Return of mutated gene

I am on Day 389 after my SCT for Myelofibrosis. Until now things have gone pretty smoothly, with just two minor infections. However, at my appointment last week I was told that the mutation which caused the disease, JAK2, had reappeared at a low level (0.9%). Chimerism is 99% (had been 100% for many months. I know these percentages are tiny but I am very anxious that Myelofibrosis may be creeping back. I am due to have a second DLI soon so that gives me some hope, but it's no guarantee. I just feel very helpless and scared.


  • Hi Otterfield,

    My name is Dan Yeates, I am one of the community champions here at Anthony Nolan and I had a SCT in 2020 to cure Acute Leukaemia.

    I am very sorry to hear about your current situation, I can only imagine how scary it is for you - I would be exactly the same in your place. The best thing you can do is talk to your medical team about how you are feeling - ask them to explain exactly what it means. The good news is that they know it has reappeared and the level is very low.

    If you want to talk in the meantime then please give out Patient Services team a call - the number is 0303 303 0303 and they will be there for you as and when you need them.

    I hope that helps - we are all here for you.


  • Hi Otterfield,

    I'm Rachel, Lead Nurse here at Anthony Nolan.
    I'm sorry that you've had this news, I'm sure its been a difficult few days for you. If you would like to speak to someone in our team please do get in touch with the details Dan has provided above. We also have a great Telephone Emotional Support Service, in addition to the enquiry line, if you'd like the opportunity to have some ongoing support, if you're interested in this please get in touch on our enquiry line or email patientinfo@anthonynolan.org.

    As I'm sure you know, the DLI is aimed to improve your chimerism and also provide a graft v's disease effect so it's good news that you have this treatment planned. I really hope this has the desired effect, please be aware you may be given a few further DLI doses and will have ongoing chimerism/monitoring of the mutation but this will be with time intervals so it may be sometime before you have another update on the chimerism level and JAK2 %.

    If there is anything more we can do to support you please don't hesitate to get in touch.
    Best Wishes

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