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Hi Neil,
The major change has been in my Hgb counts which dropped from 9.8 in Aug 2010 to 6.0 in Feb 2010, a steady decrease even with the blasts fairly low. My doctor was concerned and decided to change from Procrit to Aranesp, feeling that the slightly different molecule might work where Procrit didn't seemed to be helping after many months of usage.
The iron (Venofer at 200mg/week) was started by my doctor in an attempt to help the Hgb. Recall that I've never had blood transfusions so my ferritin level was not very high, just over the upper limit of 336. After 7 weeks of Venofer the ferritin level was 805 last week and I think we may stop soon.
The most significant change has been from Thalidomide to Revlimid. The good secondary response I had with Thalidomide since Jun 2009 seemed to be waning after 18 months. We had stopped Revlimid in Oct 2008 due to platelets and WBC dropping even though the Hgb was holding in 12's. My platelets and WBC are much lower than when we stopped the Revlimid but have been steady for over a year so we decided to retry the Revlimid at a low dose, 5 mg/day and watch the platelets and WBC. Thus far the results have been good and we are hoping that a good secondary response to Revlimid may continue. We will continue the Dacogen (decitabine) at 10-15 mg on the one day per week protocol.
Thanks for your support, tell Ruth Hi for Nancy and I.
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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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