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MDS Myelodysplastic syndromes

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Old Wed Nov 7, 2012, 12:46 PM
vikasgoyal vikasgoyal is offline
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Confused when to start treatment

My father's hgb right now is at 7 and for some reason which is unknown his ferritin stands at 2500. He just had 2units of rbc transfusion 4months back.Rest of all his counts are normal and he feels perfectly fine. Different doctors are coming up with different opinions. Some say that he should start with lenadomide to keep a balance between his hgb levels and manage his ferritin. His personal doctor advices against it and he feels he does not require any treatment at this stage and can still be managed with blood transfusion and Exjade. We are really confused with what needs to be done. please send me your suggestions.
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Father 72, diagnosed MDS RCMD June 2011. HGB 5.5, WBC 7.2, Plt 400 Cytogenetics Normal. Blast cell count 2% ( July 2012 ). Currently on Danazol, Ferritin 750
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Old Wed Nov 7, 2012, 02:09 PM
DanL DanL is offline
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When to begin treatment really is the million dollar question, and comes down to some combination of what your doctors think and what you think as a patient. My current hematologist has basically said that we can start treatment at any time, but you will know when it makes sense. 1 transfusion every few months seems to be pretty good. My doctor seems to think that if you are generally feeling well and the disease does not seem to be progressing, that it is better to hold off on treatment due to the side effects. When you have signs or symptoms of a more aggressive disease, treatment makes more sense.

The high ferritin can be caused by transfusional iron overload, but may also be caused by hemolytic anemia or high iron consumption.

From the studies I have seen, revlimid is really good when an MDS patient has the del 5q change in their chromosomes, and works in about 25% - 30% of patients without this change.

Not sure if this helps.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Thu Nov 8, 2012, 04:16 PM
vikasgoyal vikasgoyal is offline
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Dan i definitely agree that quality of life is more important and with low risk MDS it's worth a wait before treatment can be inititated.
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Father 72, diagnosed MDS RCMD June 2011. HGB 5.5, WBC 7.2, Plt 400 Cytogenetics Normal. Blast cell count 2% ( July 2012 ). Currently on Danazol, Ferritin 750
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Old Fri Nov 9, 2012, 01:41 PM
vikasgoyal vikasgoyal is offline
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What i fail to understand is the reason why counts keep falling although the blast cells are 2% ? any idea?
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Father 72, diagnosed MDS RCMD June 2011. HGB 5.5, WBC 7.2, Plt 400 Cytogenetics Normal. Blast cell count 2% ( July 2012 ). Currently on Danazol, Ferritin 750

Last edited by vikasgoyal : Thu Feb 21, 2013 at 11:01 PM.
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