[Sue&Dave]

So it appears that Dave is one of the 'lucky' ones that had a textbook response to Vidaza. Counts started going up almost immediately and after 4 rounds (except for his white), all are in the normal range with no need for transfusions except 2x after the first round.

Spoke with his hemo last week by phone to get the results of his latest BMB. She told us (haven't seen the report yet, should be available this week), that his blasts are down to 1% (from 3-6% depending on which hospital did it), and he has normal cellularity for his age.

When we had met with her in conjunction with his latest BMB she said we could expect the Vidaza to work for 1 to 2 years. During our phone conversation I asked her about that again and I think in light of the promising BMB results she elaborated and said that the 1 to 2 years is based on data from clinical trial when Vidaza was being approved. She further said that most people enrolled in the trial were in worse shape than Dave (he had worsening symptoms and plummeting counts, but blasts never really got out of control). All of this to say that she 're-scored' him while we were on the phone. Based on the new data he went from Intermediate-High risk to Very Low risk with the IPSS scoring system. So we are cautiously optimistic, understanding that things can change on a dime.

Question #1: is 're-scoring' after successful treatment typical? And are there any new studies out there on the long-term effectiveness of Vidaza?

Given this great news and the fact that he was very ill last year with an unrelated condition, we are looking to do some more traveling in the upcoming year (I decided to semi-retire - and spend a couple of good years with him).

Question #2: How much flexibility is there in the Vidaza scheduling? Initially she told us if we change anything she would like to see a shortened timeframe, but after the BMB results I thought she said no longer than 6 weeks apart - which seems awfully long (he's currently on 7 days - off 21). I will certainly confirm with her - but have you ever had a non-medical occasion to adjust the schedule?

Sorry this is so long - but I thought I would go to all of the experts out there for advice!