Vidaza, "re-scoring" and "re-scheduling"
 

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!

That is great !! Usually good results seem to portend more good results. Caution however is that if there is one thing I have learned about Vidaza is that results vary from person to person and oncologists/hematologists are seldom in agreement. Six weeks ago I went from no blasts and nothing atypical for months on my BMB to having everything go bad and the doctor wanting to put me in the hospital the next day for induction chemo (30 days). This all happened within a two week period while on Vidaza. Then there are others who (DanL) have had terrific success with Vidaza.

The longest I ever went was the 7 day/28 day cycle.

#1: The studies for Vidaza have been very inconsistent for the past 10 ten years. So many variables.
#2: Again there are several schedules that are used with Vidaza. The approved schedule by the FDA is the 21/7 schedule. Wish you the very best and keep close attention.

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.