Hi all, it has been a very very long time since I've been on the site, in fact I can't remember when I last posted although I have been on once in a while just to see how things are going for all. So, I hope everyone is doing well, for those of us in the north I hope you are all ready for the winter season. A quick little background, my husband was diagnosed in July of 2010, at the time of diagnosis he had a very irregular biopsy report which caused me to do some searching and led me to this site and to Trey's invaluable advice where I sought a second opinion with Dr Talpaz at U of M. We are very very happy with Dr Talpaz and are still seeing him every 6 months. Greg has been on Gleevec, Tasigna, and now Sprycel 70 mg since early 2011. He responds well to the drug, no serious side effects, in fact he works about 60 hours a week. Don't get me wrong, he crashes on Saturday after work and most Sunday's has a hard time getting out of bed but fortunately he is able to make it through Mon thru Sat in our family run business.
My question is he has never received PCRU, he is "below the reportable range" so Dr Talpaz is not concerned that he has not reached the coveted "undetectable". My concern is his PCRU 3 tests ago was the lowest he has been at .055. Six months later it went to .069 and this last time went to .070 which compared to the previous is not really a change. When I look at the overall score ranges for him I see a trend in the wrong direction. At what point do we get concerned about this? Is it normal for someone who has been on Sprycel for this long to still be fluctuating and not have reached the big U?
Just looking for some reassurance, hoping they wont change his drug or up his dosage as he is very very sensitive to these drugs, his blood counts do not respond well which is why he was taken off Gleevec and Tasigna.
Thanks for any and all input, have a blessed day all...
Audrey
