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#26
Tue Jan 21, 2014, 08:35 PM
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my 2 cents
I have mds. I was a mechanic for over 20 years. For years never wore gloves, washed my hands with solvents, carb cleaners, brake cleaners, benzenes, gasoline etc.. I remember many times just feeling sick I had absorbed so much gasoline or exhaust fumes. Gas running down my arms, heck I've even swallowed the stuff siphoning gas. Sounds like a likely cause, but my dad had mds/aml and was never a mechanic and was a health and exercise fanatic. My younger brother never the same exposures and his blood counts have started to drop. So who knows?? I know that stuff is certainly bad for you. I had lots of exposure to round up and other chemicals too.
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML. 
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#27
Tue Jan 21, 2014, 09:17 PM
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It is so difficult to understand what might have been the trigger. Why haven't you had any treatments?
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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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#28
Tue Jan 21, 2014, 10:25 PM
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Good Question
The trigger, environment, luck, just cuz?
I'm on the cusp of treatment. We are now watching counts every 2 weeks. But how low do things need to get, though I'm in no hurry to start treatment if I'm feeling good. I was in hospital for 6 days a few weeks ago for infection. That was my first scare of having low counts. Getting tired of being germaphobe. Thanks for asking.
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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#29
Tue Jan 21, 2014, 10:54 PM
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That is interesting that you could go this long without treatment. They told me I would have been lucky to have made it for ten months without treatment. I also have been feeling good and still walking/golfing. It is strange, isn't it. I just finished my second round of Vidaza and will have a BMB in two weeks to determine when to have a transplant. My numbers have deteriorated in the last two months.
Good luck, don't wait too long.
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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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#30
Tue Jan 21, 2014, 11:10 PM
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What were the determining points that indicated you needed to start vidaza?
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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#31
Wed Jan 22, 2014, 06:59 AM
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Neutrophils
Hi Kyis,
Good that you are afraid of infections - you neutrophils are much too low. Perhaps you could ask for treatment with Neupogen or a similar drug that increases the WBC. Kind regards Birgitta-A 74 yo, dx MDS Interm-1 2006. Very severe fibrosis and tx dependent from dx. Positive results with Thalidomide 2010-2013. Now treated with Revlimid that has showed good effect.
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#32
Wed Jan 22, 2014, 11:35 AM
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Kyis,
My blast count was the primary reason from my bone marrow biopsy. Also, my whites, reds and platelets were low and the numbers were deteriorating.
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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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