Oh my gosh I am so sorry you are being treated like this. As a nurse I find it disgusting that your medical team arnt keeping you fully informed. Even if you are a medical mystery at the moment they should involve you in decisions like palliative care. I hope you can get a patient representitive to discuss your concerns with doctors.
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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