Hi, Bridgette,
I was diagnosed with del 5q in May 2015, when I was 59. My hemoglobin counts had been going up and (mostly) down for five or so years before that. After watchfully waiting all that time, I had a bone marrow biopsy in 2015, when my HgB was around 9. It went down to 6 in October, 2018, fairly suddenly. A BMB in November 2018 showed increased blasts to 10%, putting me in high risk territory. I had my first and only transfusion in mid-December, 2018, and started Revlimid, the drug of choice for del 5q, in December. For almost 10 years, I lived a very normal life, exercising, traveling, raising a family, working, and trying to eat a healthy diet. After 3 months on Revlimid, my HgB is higher than it has been in years and I feel great! We are contemplating a bone marrow transplant if the Revlimid can get my blast percentage down again next month. Take home messages for you: Live your life. Don’t be afraid of a transfusion if you get really anemic. GO TO A CENTER OF EXCELLENCE for a second opinion. Del 5q is rare, usually pretty benign, but can turn into a dangerous situation quite quickly, at least it did for me. Please let me know how you are doing. I don’t know anyone else with MDS del 5q.
