Thread: MDS Questions
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Old Thu Mar 1, 2018, 11:16 AM
Jill2008 Jill2008 is offline
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Join Date: Jul 2008
Location: Redding, CA
Posts: 84
I also had a hypocellular marrow 30-40% and blasts less than 5%, but it was mainly my platelets that were affected. I had fatigue and bruising that prompted me to schedule an appointment for a physical. I was sent for a bone marrow biopsy and was told I had a vitamin B-12 deficiency (even though I had four chromosome abnormalities). Initially B-12 injections helped, but then my platelets started dropping again. After 6 long months, I was finally referred to Stanford where they requested my slides, etc. to obtain their own biopsy results. The results showed that it could be MDS, but further testing was needed for a definitive diagnosis. My hematologist, however, was 99% sure that I had MDS. In retrospect, I should have sought a second opinion but I was at a Center of Excellence for MDS. As a search for a donor began, I stopped working and my counts stabilized. I was then on watch and wait for nearly 2 years and then Monosomy 7 showed up following another biopsy. From what I understand, being a woman under the age of 55 at the time, with a hypocellular marrow meant that the MDS was probably brought on by an autoimmune attack. I was diagnosed with Raynauds around the time that the fatigue and bruising started, so this made sense. Unfortunately, genetic testing wasn't common place back when I was diagnosed.
Have you considered a second opinion at a Center of Excellence?
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
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