[DanL]

Good news on Vidaza working quickly. The standard of treatment for Vidaza is the 7 days on 21 off schedule, but many doctors are flexible with the scheduling, with many patients (like myself) on a 5 day dosing, some do a 5 on, 2 off, 2 on schedule. The results vary for each approach, with variances that tend to be within a standard deviation or two, meaning that the variance may not be significant. There have even been studies where some patients are put on low dose vidaza or dacogen for up to 10 days at a time with some success. One of the members of the forums had fairly erratic schedules that went for as long as 6 or 8 weeks between treatments at times, but that was usually due to dose delays or experimentation, but he did very well with several alternative schedules.

As for the other question you had. I have not seen any real information on re-scoring per the IPSS, WHO, or FAB standards as to how well they adjust according to lifespan. The problem is that sometimes the disease stays relatively at bay for some time, then comes on strong when the drugs stop working, and other times the disease just progresses slowly - that is the variable. I have spoken to a few people who have been on vidaza for as many as 6 years with some positive effect, and others who did not experience any real benefit.

The literature that is out there suggests that the expected duration of benefit is somewhere between 7 and 24 months. The data is just so sketchy as there seem to be so many other factors than blasts and current blood counts that impact the course of MDS.

I would say that as long as his blood counts are good and he is up to travelling, then take advantage of relatively good health now, just follow good hygiene, good rest, and know where to go for care if needed.