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MDS Myelodysplastic syndromes

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Old Tue Mar 15, 2016, 12:12 PM
Henry C Henry C is offline
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Location: Marengo, IL
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High Platelet Count

I served in Nam 1970-71. About 2 years ago my platelet count was found to be 700,000 which is way above the normal 100,000-400,000 per liter. I was prescribed hydroxyura, a mild chemo drug and it brought my count down to 400,000. I went to a VA Clinic and was advised to file an AO claim even though the VA doctor seemed amazed. He said he never seen high platelet counts, only low ones. A bone marrow biopsy revealed a chromosome problem. The VA rejected my claim and I sent a letter of disagreement. The VA asked for and received my medical records four months ago and I haven't heard back. My oncologist who once worked for the VA, feels this condition might very well be service connected but warned me about getting the VA to do anything. No one in my family has this condition including my brother who also served in Nam. Has anyone heard of this condition?
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Old Tue Mar 15, 2016, 02:29 PM
Neil Cuadra Neil Cuadra is offline
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Henry,

I would think you'd need a definite diagnosis before you can pursue your claim. Has any doctor put a name to your condition?

If they haven't, one possibility is essential thrombocythemia, which exhibits high platelets (thrombocytosis) and is often treated with hydroxyurea (hydroxycarbamide).
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Old Fri Mar 18, 2016, 12:58 AM
DanL DanL is offline
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Henry,

High platelets are unusual in MDS, but pretty common in ET as Neil suggested, it is also common in myelofibrosis, which is considered a matured version of ET, so it usually has other factors included such as anemia and fibrosis in the bone marrow. Also, there are a handful of chromosomal abnormalities that show up.
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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 Fri Mar 18, 2016, 03:20 PM
vickinish vickinish is offline
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High Platelets

Unusual but not impossible. I have CMML and started with low platelets. Over time they rose, finally reaching 800,000. At that point I began hydroxyurea and continue on it at a low dose, now 500mg three times a week.

My initial diagnosis was in 2006 and I developed the high platelets about three years later. No other treatment for me and no symptoms or problems. The platelets are slowly dropping and I will have to go to twice a week on the hydroxyurea in a year or so.
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Vicki - Age 68, dx CMML in 2006. Watch and wait for a few years, now on low dose hydroxyurea to control rising platelets.
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  #5  
Old Wed Apr 6, 2016, 03:48 AM
gramous gramous is offline
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hello,
high platelets are common in mds types RARS-T (overlap MDS/MPN and associated mutation jak2+ and SF3B1) and 5q- (not other mutation that 5q-)... Other it's common in ET and the associated mutation is JAK 2+ of reticuline+.Both RARS-T and ET are managed with hydroxyuree. kind regards
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boyfriend with RARS-T dx 11/02//dx : hb 11,5; plt 870000, wh : 6500//Before fasting cure (13/04): hb: 8,9; plt 2200000; white:6000//After fasting cure (14/09): hb 12,5; platelets 400000, wh 3000.//Now (15/08) : hb : 11,plt : 650000, wh 3000// hydrea 1c/day and cardioaspirin, 1c/day,age: 56 y.
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