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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I’m 41 yo F w High Risk CLL and on Calquence since May. In the last 6 weeks I’ve started noticing a lot of hair loss. It doesn’t seem to be a typical side effect of calquence. I’m s/p hysterectomy back in 2021 but still have my overies. Anyone else experiencing hair loss? If so has anything helped?