My 73 year old father has recently been diagnosed with RAEB 2 (normal marrow cytogenetics) his counts are:
WBC 0.8x10^9/L
Hb 10.1g/dL
Platelets 327x10^9/L
Neutrophils 0.3x10^9/L
We're currently waiting for Vidaza to be approved for use in the UK - his specialist wants to start him on it as soon as possible, but getting approval's not easy
He had an appointment today where he was hoping for a transfusion but didn't receive one, just a got a prescription for Tavanic, Aciclovir and Sporanox to help keep infections at bay.
He used to be very fit and active, as recently as the summer before last he was walking in the Alps and able to cover 12 miles of mountainous terrain in a day, now he can only walk a mile at a fairly slow pace.
I'm rather concerned that he's not receiving all the treatment he needs and wondering what to do next. I've offered to fund Vidaza for as long as I can, but this has not been mentioned as a possibility, and I doubt I could afford it for long given the high cost of treatment.
I'd just like some advice and support at the moment, beginning to feel a little lost and disheartened with the fairly rapid decline and lack of action.
Will