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#2
Wed May 11, 2011, 09:14 AM
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copper and MDS
I too am curious about the posts I have read concerning copper....I need the "Barney" version (for 3 year olds)--my head is on overload!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly 
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#3
Wed May 11, 2011, 03:08 PM
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The importance of copper deficiency is that there's link to low copper and low risk MDS. They found restoration of copper levels reversed or improved the MDS. The abstract below is the study that found the link. The take away of this is that in addition to checking B12, folate, iron, zinc and B6, you doctor should also check your copper.
http://www.haematologica.org/cgi/con...ull/92/10/1429
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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#4
Wed May 11, 2011, 05:14 PM
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Hi,
I'm one of the people here with low copper. Diagnosed with MDS RAEB blasts increasing, neutrophils always less than 0.2, severely transfusion dependant. Copper deficiency discovered then treated. Blood counts returned to essentially normal, BMB showed huge improvement. Blasts returned to normal levels. My dilemma is....did I/do I have MDS made worse by copper deficiency or just straight out copper deficiency causing bone marrow failure. Which came first...the MDS or the copper deficiency?? The complicating thing is that the BMB taken when peripheral counts returned to normal and copper levels were in normal range still showed dysplasia although no where near as bad. I'm confused, my doctor seems confused and I am left in limbo with both diagnosis and prognosis. On the upside, I'm very grateful for the huge improvement in my counts. I'm hoping that after my copper levels have been in normal range for a prolonged time, that a repeat BMB might show the dysplasia is gone. Regards
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy. FISH reported normal cytogenetics but gene testing showed Xq 8.21 mutation Xq19.36 mutation Xq21.40. mutation 1p36. Mutation 15q11.2 deletion
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#6
Thu May 12, 2011, 02:21 AM
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Hi, I think you'll find different labs have different normal values. Where I get my tests the normal range is 13-25 umols. Don't forget to ask for the copper protein as well...ceruloplasmin. It's a bit like the relationship between iron and ferritin, one is the blood level and the other is the protein bound form.
Regards
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy. FISH reported normal cytogenetics but gene testing showed Xq 8.21 mutation Xq19.36 mutation Xq21.40. mutation 1p36. Mutation 15q11.2 deletion
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#7
Thu May 12, 2011, 08:19 PM
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Copper levels...
How do they test? What should I ask my Dr for?
Thanks...
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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Copper
