Hi all, I’m Lucy, I was diagnosed with AML last year June ‘24, aged 38. I’m recovering from an allo stem cell transplant last November ‘24. Gratefully I should be cured (unless I relapse). I had to move from Bermuda to Boston, USA for treatment and I expect to be here til Nov when I celebrate my first re-birthday after SCT. My mother moved with me as I’d never want to go through this alone. It was a big adjustment leaving the rest of my family and friends (and cat!) as well as losing my job as my recovery took too long 🙄 I feel like my life is on pause and I forget that everyone else is carrying on as normal. Did others have complete changes in living arrangements or have to move far for treatment? Or relate to other aspects? Also any tips on hair regrowth? My hair has been growing for 6 months and missed the “cute chemo curls” memo - any advice on taming my “mangy rat met electric socket” look is welcomed!

HI I need solution for this My Grandfather has diagnosed as AML I think he is in initial stage. I am his grandson we asked many hospitals in our surroundings no is responding and treating him properly and not admitting him. Due to age reasons. He is almost 90 years old. He are suffering a lot. Not having food. Properly and i can't see him like that I am seeking suggestion to extend his life span and ways to do this we are family of poor not rich. we are seeking for support please help to to find solution

I’m Lucy, I’m from Bermuda. Since my diagnosis in June 2024 I have been living in Boston, USA while receiving treatment for AML and recovering from a stem cell transplant. I’m looking forward to returning home once I reach 1 year post-SCT: November 2025. I was diagnosed out of the blue - I tried to donate blood but my hemoglobin was way too low. A couple blood tests later and I got my AML diagnosis and an urgent referral to Dana-Farber Cancer Institute in Boston. I feel lucky to be treated there. I was freaked when I first walked in but immediately felt enveloped in love, safety and expertise. My mutations were NPM1, DNMT3A & GATA2 so I had 7+3+GO induction and two rounds of HIDAC consolidation. MRD was persistent and my oncologist realised my supposedly favourable mutations were behaving like intermediate ones, so I swapped to the stem cell transplant treatment route. I received my new stem cells in November ‘24 from an amazing wonderful unrelated 25yo man. He’s still anonymous to me but I hope we’ll eventually meet. My recovery is going well, just a few niggles with skin and liver enzymes. I’m gradually regaining energy and fitness and staying safe while my immune system rebuilds. Now counting the days til my first re-birthday!

I was diagnosed in Dec. 24 with MDS following Myeloid NGS Pathology Report. This report identified I am positive for ASXL 1 & RUNx1 w/3 genetic variants. High risk per IPSS-M, WHO 5th Edition. I have had a 6 cycle Aranesp 500 mg a 2 wks. with insufficient response due to transfusion requirements. Currently receiving Vidaza 5of 6 cycles in with ongoing need for transfusions. Very concerned that current trt modalities are not sufficient & a likely transition to AML is in my future. That said, I’m interested in all the knowledge re: this potential phase of disease that I might face. Linda

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