Hi Jools,
Good that your doctor in Blackpool is exellent. Very positive that your husband hasn't got any chromosome aberrations! Still a patient with RAEB-2 should get Vidaza or Dacogen in most Western countries except the UK.
If you read this article you will see that the author thinks that:
"All patients with MDS should be considered for a clinical trial with the possible exception of those with 5q–. However, because of the recently demonstrated efficacy of the DNA-hypomethylating agents, some think it is unethical to withhold such a therapy from higher-risk patients. At the very least, one should consider a clinical trial in which a DNA-hypomethylating agent is used as part of a novel combination regimen."
http://bloodjournal.hematologylibrar...ll/113/25/6296
Watch and wait is not for patients with high risk disease like RAEB-2 - instead you should try to get treatment while your husband is well enough to manage with the adverse effects of treatment.
Ask your doctor if he is engaged in any clinical trials for MDS. If not ask about stem cell transplantation - many patients without siblings get stem cell transplantations with stem cells from special centers or cord blood.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen for low WBCs, Thalidomide and Prednisone for bone marrow fibrosis