Hi fellow MDS colleagues,
I haven't posted in a while as my counts, blasts, etc, have been on a roller coaster ride. My blast counts have been as follows:
April 2004= 15%, blasts controlled to normal using Thalidomide for 30 months, then Revlimid for 18 months. Stopped Revlimid Aug 2008 due to low platelets, WBC.
Tried Vidaza for 4 cycles with no apparent effect.
Blasts 15% in May 2009, Platelets min of 9 in late May 2009, started Promacta for platelets in June 2009, platelet counts stablized in mid 20-30's. Hgb minimum reached in July 2009, restarted Thalidomide which resulted in an improvement in Hgb.
Blasts 40% in Oct 2009, started low dose Dacogen(decitabine), 10mg/one day per week/every week.
Blasts 16% in late Feb 2010, increased Dacogen to 15mg/one da/wk, Hgb increased until July 2010.
Blasts 40% in mid July 2010, increased Dacogen to 20mg/one da/wk.
Blasts 10% in Sept 2010 but Hgb decreased at 20mg/wk dosage.
Reducing Dacogen dosage in Nov 2010 to see if Hgb will increase.
Some concern if the last BMB is really accurate but pathologist stated it was a very good sample.
I'm continuing on the 3 drug regimen: Low dose Dacogen, Thalidomide, and Promacta. The low dose Dacogen is very easy to take with minimal increase in fatigue and little effect on blood counts.
The low dose Dacogen may be a result of studies in these links:
http://precedings.nature.com/documents/3044/version/1
http://www.ncbi.nlm.nih.gov/pubmed/20501800
Feeling pretty good and CBC counts holding fairly steady. Looking forward to my 7th year since diagnosis and celebrating another Marriage anniversary in May 2011.