Hi crpa,
Here is an article about treatment for different blood diseases among other MDS. There are 2 drugs that are approved for other diseases - Zolinza and Epival - so they can be prescribed off record if your doctor thinks it is OK.
http://annonc.oxfordjournals.org/content/20/8/1293.full
Zolinza vorinostat
A phase I trial of oral vorinostat was conducted in 41 patients [31 AMLs, three chronic lymphocytic leukaemias (CLLs) and three MDS]. An MTD of 200 mg twice daily or 250 mg thrice daily was established. Observed toxic effects included fatigue, thrombocytopaenia, nausea and vomiting as well as diarrhoea.
Overall, seven patients had improved tumour responses; two CR and two CR with incomplete blood count recovery.
Epival valproic acid
Normal pharmacological intervention involves administering ‘all-trans’ retinoic acid (ATRA); however, patients can develop resistance easily. Studies have therefore been carried out to identify whether HDAC inhibitors have potential as an adjuvant to ATRA.
A phase II trial in patients with AMLs and MDS using valproic acid (VPA) as both monotherapy and in combination with ATRA has been carried out. In total, 58 patients were recruited, of which 31 received VPA as a single agent.
However, ATRA was administered to 13 of these patients who showed no response or relapsed. The remaining 27 patients received VPA–ATRA for the duration of the trial.
The trial reported results for
23 patients with a peripheral blood count >5% and indicated that five patients showed a complete peripheral blast clearance while six patients showed a diminished blast count.
The VPA was also well tolerated in most cases, although side-effects did include fatigue, tremor and thrombocytopaenia . A previous phase II trial combining VPA and ATRA in AMLs and MDS patients has also shown
an overall response rate of 35% (7 of 23 patients). Generally, these trials have shown VPA to have beneficial effects in AMLs, as a combination therapy.
As you perhaps have read one member of this forum (Lynn) had a very good response during many months when she was taking Epival.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen 3 injections/week for low WBCs. Thalidomide 50 mg/day + Prednisone 20 mg/day since June 2010 for fibrosis with low counts.