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Old Mon May 12, 2014, 01:16 PM
jmajjb jmajjb is offline
Join Date: May 2014
Location: Amery WI
Posts: 38
Question New member

I have not received a diagnosis yet but have had a bone marrow biopsy that revealed ringed sideroblasts. The hematologist said that I do not have myelodysplasia but he suspects some chromosome problem- possibly inherited. My question is: is there any treatment for chromosome problems? I have mild anemia and moderate thrombocytopenia. I am scared. The cytogenics will be done this week but the waiting is killing me and I don't know what to expect. My copper came back at the low end of normal. I had been on a no copper supplement that had some zinc in it. I switched supplements 40 days before the copper serum test and also increased copper high foods the past few weeks. They didn't think about doing a copper level initially that is why the blood level was not checked until now. How long does it take to raise serum copper levels? What should I expect from the cytogenics? Any thoughts would be appreciated. Also how often do people recheck CBC when they have refractory anemia?
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Old Mon May 12, 2014, 03:13 PM
bailie bailie is offline
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
I wish you the best. It is a trying time. I was diagnosed in November 2013. Since that time I have had four BMBs and 20 CBCs. Up until that time I had a CBC every two years. It is interesting to look back and pinpoint the time I was first affected by MDS.
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Mon May 12, 2014, 05:52 PM
jmajjb jmajjb is offline
Join Date: May 2014
Location: Amery WI
Posts: 38
Sense of taste

Has anyone else lost their sense of taste or had a change in taste? Is this related to anemia? Also is weight loss related to anemia? I have so many questions- sorry!
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Old Wed May 14, 2014, 03:52 AM
Cheryl C Cheryl C is offline
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 838
I lost weight when my MDS was high risk but I didn't feel like eating bcs I felt vaguely nauseous a lot of the time.
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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