MDS is a bone marrow failure disorder
MDS is a blood cancer
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    Pat McChesney

    Hello, I am a 76 year old female diagnosed with MDS almost 1 1/2 yr ago. My initial bmb showed me to be low-risk with SFB3B1 and TET2 mutations; Hgb was 9, platelets good, abs neutrophils in low-normal range. I was started on Procrit then switched to Aranesp after 6 mo or so b/c of limited response. I was maintaining with Hgb in 8s or low 9’s but deteriorated in Oct-Nov, when I began needing blood. Mid-Dec my Hgb dropped to 5.7 and I developed pneumonia. From there I needed usually 2units of blood about every 2-3 weeks until Jan 2020. A second bmb on 1/14 showed my genetic mutation had changed from sf3b1 and tet2 to sf3b1 and tp-53, which Is the really bad actor that usually predicts a poor outcome. At the same time, my Hgb was up to 9.0. The docs quite understand what had happened so we decided to continue with Aranesp and labs every 2weeks. I was stable for 13 weeks, Hgb in 8s so no blood needed until last week, when my Hgb went from 8 to 6.9 and I was given 2 units of blood. Next appt 6/16. I’d hoped to start on luspatercept but not sure I now am eligible since I went so long without needing a transfusion. I’m a patient of the Massachusetts General Hospital system and their protocol is not to transfuse unless your Hgb is <7 unless you’re very symptomatic, which I typically seem not to be. Does this scenario seem familiar to anyone and, if so, what would you suggest I do? I want to say how grateful I am for the support I’ve received from others dealing with this difficult disease, whether from other patients, loved ones or professionals. I’m thankful for you!!

    Jimmy Greenhut

    Pat, I had Dr. Alan List from Moffitt. He has since left tho. He told me as long as there is no tumor involvement you can get a transfusion <9 HB. Would get a 2nd opinion. They’re not walking in your shoes with the fatigue & feeling lousy. GL

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