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MDS Myelodysplastic syndromes

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  #1  
Old Wed Apr 8, 2015, 10:49 AM
PaulS PaulS is offline
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Vidaza

I've finished four rounds of low intensity Vidaza (5 days once a month) and so far the only changes seem to be lowering all of my blood counts - platelets have dropped to low 20's from 60+, WBC have gone from normal to 2.something - and hemoglobin has been persistently low - as low as 5 and often around 7 - and I've required transfusions just about weekly - this is all very discouraging.

Has anyone had similar experience? Have blood counts rebounded after dropping so much? We were hoping the Vidaza would return my counts to near normal. I know it may take up to 6 cycles or so to tell if the Vidaza is working but so far I'm pretty disappointed.

I have a BMB scheduled for next week...

Thanks
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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Old Wed Apr 8, 2015, 01:04 PM
SASSI07855 SASSI07855 is offline
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Been there and done that. I did not show any changes until after the third go round on the shots.
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Old Wed Apr 8, 2015, 10:13 PM
Chirley Chirley is offline
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Sorry, been there done that too. No response after 6 cycles except increased blasts. I've heard some people take up to 12 cycles.
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Old Wed Apr 8, 2015, 11:22 PM
DanL DanL is offline
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There are a lot of studies out there about ideal dosing and time between cycles. I think the question that I have is what is your recovery cycle? I noticed that when I was on Vidaza that my recovery was late into the fourth week and into the new treatment cycle. Some people have seen 5 to 6 week cycles show better recovery due to the amount of marrow suppression, and others have seen that a lower dose for more days may be better.

Also as Chirley noted, some people don't see best responses until 9 or more cycles. Progression of your disease is the one indication that I have consistently seen as a reason to change over or stop.
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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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