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Thank you for asking! He is doing well except that his hgb remain extremely low. His CBC on Friday showed a hgb at 6.3. Our hema said it is “remarkable” that my father tolerates such a low hgb. He checked my dad’s breathing and his pulse and said that his body has adjusted to the low hgb. So needless to say, he had to get 2 units of rbc’s. He has been transfusion dependent since Jan 2007, getting at least 1-2 units of rbc’s on a bi-weekly basis. His ferritin is climbing but he takes 1500mg of Exjade a day with no side effects.
We need to do something about the hgb. Unfortunately, the Revlimid and Vidaza has been no success. In fact the Vidaza made my dad’s condition slightly worse, bringing his wbc’s and plts to a low stage. Prior to Vidaza, dad’s wbc’s and plt’s were always on the low normal range. Now, his wbc’s are around 3.0 – 3.2 and plts between 55- 73. Not too bad, but not as good as before. As for his problem hgb’s, they always remain between 6.3 – 7.0. We jump up for joy if its at a 7.0.
I told my dad’s hema about yours and Lynn’s success with VPA. My dad did take it in March 2007 for about 3 days and then stopped because our current hema didnt think it would do much help. But I brought up your stories to him recently and he said it was worth a shot and the side effects were very minimal that if we wanted to, we could. I just want to do some research and gather some information before we jump into anything. Right now, we are in a comfortable state where my dad is used to the bi-weekly transfusions. We will probably start next month (around Nov 10, dad’s next appointment) and will probably take the dosage the doc recommends. I will keep you posted.
I am happy to hear that you are still tranfusion independent. One step at a time.
Many blessings to continued transfusion independence!
