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#1
Sun Jun 30, 2013, 04:37 PM
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What to do?
MDS such wide spectrum of patient experiences and outcomes.
I'm new to forum and have am still feeling around. Seems like a lot of great people. Diagnosis at 7% blasts 11/12. The 9% in 3/13. I was given the possibility of ATG/Cyclosporine treatment, I have low cellular marrow and hl15?, but I'm not sure It would be the best treatment, nor does my doctor, especially when I have stem cell donors available. And other chemos too. But how does one decided. I'm young (51) and a pretty good sized guy at 6' 230lbs. So I may appear able to handle a lot. Should someone go for stemcell why in very good health or work with treatments to improve counts. Or hope blasts stay steady and go with ATG/C I still feel great and am have no problems. FYI. My father past away at 56, 25 years ago. MDS then AML
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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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#2
Mon Jul 1, 2013, 12:43 PM
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I am no expert but with blast of 9% I would try to go for the stem cell.
I am curious about something though. You stated your Dad passed away from mds to aml. Did you both have the same risk factors? I have heard and read it is not hereditary but you are at least the 2nd person I have seen on forums that a parent had it as well.
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#3
Fri Jul 5, 2013, 11:52 PM
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My father had different risk factors. He was a health/exercise nut.
Though we all did eat a lot fish from SF bay. I've heard it does happen, but is rare. What is also disturbing is my brother 1.5 years younger is showing dropping blood counts. Another BMB in a 3 weeks. Go for it even if no symptoms, I hate to wait for bad infection 1st.
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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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#4
Sat Jul 6, 2013, 12:22 PM
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I think with your increasing blast it would be better to get the stem cell now rather than later. get it under control before it gets too high. Alot of people use vidaza to keep things at bay for awhile. That might be a good way to go as well. blast are a big deal in mds. if they get too high you can go into aml which is NOT good at all.
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#5
Sat Jul 6, 2013, 06:12 PM
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I had no symptons but have high risk mds. The only chance for a cure is transplant.I went for transplant I'm on day +9 so far so good. I had no chemo & no transfusions before they say that helps. I'm 57 in pretty good health. Hope it may help in your decision .
Good luck Blair
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#6
Mon Jul 8, 2013, 12:39 PM
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Thanks!, that does help.
Ended up with an appendicitis surgery a few weeks ago and popped right out of it. I had a platelet transfusion. Does anyone know how long does a platelet transfusion keeps counts up? Mine are up slightly 90 to 115, 2 weeks later. I wonder if neutropenia can cause or contribute to an appendicitis?
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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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#8
Mon Jul 8, 2013, 03:02 PM
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They were 83 prior to surgery, post surgery 101 and day after surgery 112. 2 week later 115. I'm usually around 90-105.
And fyi if anyone ends up needing platelets prior to transplant I guess they must be irradiated. That or radiated, can't remember, but its one of those and its important.
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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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