Hi Kelly,
Good that you don´t have any serious symptoms
! Be careful when your WBC:s are 1.9 because you can get infections.
If you look at clin trials gov you will find 1098 clinical trials for MDS patients today. At John Hopkins they have 6 trials – 1 about platelet transfusion strategy, 1 with vaccination, 2 with leukemia drugs (clofarabine and ara-C) and 2 with new drugs called KW-2449 and MS-274.
As far as I understand only patients with advanced MDS can participate in the KW-2449 trial.
MS-275 is a very interesting new drug. It is an oral histone deacetylase inhibitor and is combined with GM-CSF (Sargramostim) in this study. GM-CSF is a growth factor that increases the number of cells from the bone marrow.
Histone deacetylase inhibitors like MS-275 are postulated to inactivate tumour suppressor genes leading to neoplastic transformation. Adverse reactions have been nausea, vomiting, anorexia, and fatigue but no hematological events as far as I have been able to find.
At John Hopkins they started the trial April 2007 and only 18 patients can be enrolled.
Perhaps the hematologist at John Hopkins prefers to wait with treatment – I think it is a very good strategy for many patients like myself.
Kind regards
Birgitta
68 yo, MDS dx interm-1 May 2006, transfusion dependent, desferal 4 days/month, Neupogen 2 days/week, Prednisolone 2,5 mg/day, asymptomatic