Wednesday, August 13, 2008

The results are in.......

This time there are two different sets - one is the 'old scale' and then we have the new "International Scale". Of course my eyes caught the new IS (International Scale) numbers first, which are higher (but not worse) than the readings of the OS (old scale). I will put in a better description of the changes below

And again, he has bounced a bit... last test was 0.04% - this time it's 0.079%. 0.14 on the NIS last time and up to 0.33 this time. Big sigh. The trend I see is that its going around and around in circles...... This seriously makes me think about his diagnosis - and yes, I know that I am probably following the wrong road....... but his first pcr test done was 0.13646 at Vanderbilt and his next was even lower than what it is today - 0.0286%. So in the big picture there is NO change at all!

I know it's not bad. I know it's nothing to run in circles and pull my hair out about or lay with eyes like saucers in the middle of the night. I know we need to watch for a trend. I know. But........ it still makes me wonder, still makes me look at the results and see that his results have hovered all around the same area for over two years now. It just makes me wonder - for now, thats all.

Of course this opens doors in my mind and I wonder how to get a second, third or fourth opinion on this without being rediculous. I know that some people will have a postive pcr reading even if they don't have cml. Could it be that ..........aaaaaaarrrrrrrghhhhhh! There is no way to find out without stopping the meds and risking SO much. So I will just have to stop going down that road. Seriously, it does make me wonder though..

Here is the better explanation of the new vs the old way of reporting PCR results - this comes directly from the paper sent out with the result from OHSU:

Effective February 2008, BCR-ABL quantitative RQ-PCR values will be reported as both:
a) a raw transcript ratio (BCR-ABL to control gene); and also
b) in units of the 'international scale' of standardized measurement that has been recommended by an international consensus of CML experts.

The international scale (IS) defines a BCR-ABL level of 0.1% as being equivalent to a 3.0 log-reduction from a standardized median pre-treatment baseline value (that is, by definition, equal to 100%). This 0.1% international scale level is, by definition, a 'major molecular response" (MMR) as established by the IRIS study (International Randomized Study of Interferon and STI571).
In IRIS, 100% of the CML patients achieving an MMR within 18 months of starting imatinib therapy were free from progression to accelerated phase or blast crisis at 60 months of therapy.

Special thoughts to Kay and Adrian and family
Love and light

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