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Old Thu Aug 6, 2009, 03:19 PM
knstone knstone is offline
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Join Date: Aug 2006
Location: Cincinnati, OH
Posts: 118
Dear tytd

My MDS starting in early 2004 mainly affected the platelets and WBC, my Hgb was not affected as much initially.

Thalidomide raised all the counts after about 3 weeks starting in early 2004, the levels were normal. It worked well for 30 months.

Revlimid then raised the counts to normal or near normal levels for about 12 months. A slow decrease in Platelets and WBC then started. This is somewhat normal with Revlimid, the Hgb stays good but the platelets and WBC can start dropping. By Oct 2008 the platelets had fallen to the 20-30 range and we stopped Revlimid.

Vidaza was tried from Nov 2008 thru March 2009, 4 cycles at reduced dosages due to my low platelets. Nuemega was tried at low dose and seemed to help the platelets initially, raising the platelets to the 40's, this seemed to stop working after about 2 months. After the 4th cycle of Vidaza the platelets dropped to mid 20's.

Dacogen was tried on a 1 day/week cycle at 2/3 the normal 5 day dosage on 5/20/2009. The result was a sharp drop in Hgb from 7.8 to 5.0 in a 5 week period, the platelets dropped from 20 to as low as 8. No further Dacogen has been tried since the one day infusion.

Promacta was started on 6/5/2009 and the platelets increased to the mid teens with occasional readings in the high teens to low 20's. The dosage is 50 mg/day. I've had no bleeding.

Thalidomide was restarted on 6/22/2009 and the Hgb has improved slightly to 5.2 after being as low as 4.5. The platelets are holding in the mid teens.
We may consider increasing the Promacta to 75 mg/day since I've had no adverse effects to Promacta.

My bone marrow cellularity is 20% so there is not a lot to work with.
Blasts were 16-17% on 5/6/2009, we are not sure if the Dacogen or Thalidomide has reduced the blasts or not. At this point we are just watching the blood counts each week and hoping that I havn't transformed to AML.
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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