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Hi what’s maintenance stage like for ALL

Thank you 

  • Hi, 

    I have not started Maintenance yet but I do know someone who has just finished so can pass along what she told me. Do you know what protocol you are on as they are all a little different. But feelings wise she told me she felt quite normal and didn't have any side effects apart from a little nausea which was handled with anti-sickness. My consultant told me that for the most part once I started I could go back to my normal life (covid changes that a little I think).

    Did you have any specific questions? I could ask my friend for you or if you wanted there is a young adults charity called trekstock which have a a facebook pages, I find asking questions on there to be quite useful. 

    Hope I've been a little bit helpful! 

    Diagnosed July 2020 with Acute Lymphoblastic Leukaemia

    Started UKALL14 0.1% refractory disease noted after consolidation on MRD

    Started Blinatumomab August 2021and achieved MRD negative

    Disease escaped bone marrow and went to breast

    Due to have FLAG-IDA then onto stem cell transplant