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MDS
Dear Mydad,
MDS is a severe disease and MDS with excessive blasts is always difficult to treat. Vidaza has probably helped your dad since he only needed blood transfusions 4 times during last year.
When we have MDS we can get low hemoglobin (HGB), low white blood cells (WBC) and low platelets. For low HGB we can get blood transfusions, for low WBCs we can get Neupogen or a similar drug and for low platelets we can get platelet transfusions or in some cases a drug called Promacta.
Infections and bleedings are dangerous for MDS patients. It is important to try to avoid infections and all kinds of drugs that can decrease platelets. All painkillers can decrease platelets but since your dad's legs always are aching he probably has to take painkillers.
If Vidaza isn´t working any longer your dad can try Dacogen as your doctor said. Other drugs are Revlimid or Thalidomide.
It is true that patients with MDS that are too old or have too severe other diseases for Stem Cell Transplantation can only try different drug och hope for a response. If you read Kirby Stone´s history you will see a patient with severe symptoms from diagnosis who has fighted MDS during many years.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006. Transfusion dependent from dx. Have received 142 unit of blood. Good response after treatment with Thalidomide + Prednisone
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