Friday, April 01, 2011
Prognostic markers again.
A new paper from Montserrat's group on prognostic markers in stage A CLL suggests that the most useful indicators of a short progression-free survival are a total white count of greater than 30k and unmutated IGHV genes. The problem with the FISH abnormalities del 17p and del 11q is that they are so rare in stage A cases that they really do not really make an impact, whereas unmutated IGHV genes occur in 36% of cases. In multivariate analysis CD38 and ZAP-70 were squeezed out. Perhaps after 12 years people will begin to realize that V gene mutations ought to be done in every case.
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I am still waiting on my IGVH results. ZAP-70 came in at 41%, so I suppose that is not so good, but, as you keep telling us, it ain't over till the IGVH gene sings!
12 years!!!! And not only are not all patients tested but many "trials" do not even test or at least let on to the IGVH status in their results.
And some folks wonder why lots of us don't "trust" the medical profession!
Well, the fat (heavy) gene has sung! Problem is that it almost seems like multiple operas are going on... OK, first CD38 test showed CD38 at 48% expression (lab standard indicated 30% as cutoff). Second CD38 test at a different lab showed 8% expression. Huh? Then the ZAP-70 test then came back with a measure of 41% (cutoff at 20%). OK, so far 2 out of 3 tests not so good. I heard from my oncologists office last night - IGVH results came in at 9% mutated. So, it is a tie at 2 and 2 for prognostic tests, but as IGVH is the gold standard I think I should give the tie to the IGVH test...
In 2004 there was a paper by Ressenti, et al, in the NEJM (quoted by Chaya Venkat on her wonderful website) that said that when ZAP-70 and IGVH are discordant, the ZAP-70 test was the one to listen to. Then came all of the issues - questioning whether ZAP-70 results being measured in commercial labs were reliable at all...
Should I ask my doctor to run all the tests again and see if we can get unanimity? Alternatively, I could submit blood samples to some research institution with a better reputation for high quality results (I am just a few miles from Stanford University, if their hospital qualifies in this case). Or I could just listen to the IGVH result I have now...
Any advice?
ZAP-70 done by the Rassenti lab measures something different to what is measured by other labs. The results of studies of ZAP-70 done by Rassenti do suggest that it trumps IGVH, but done by any other lab it either gives the same result as IGVH (Crespo and Orchard methods) or is complete nonsense (most commercial labs).
You can't get an IGVH test wrong and I would go with that.
Music to my ears :-)
I think patients should have the IGVH test done during the initial diagnostic test, it took me 3 years from being diagnosed to get someone to agree to do the test.
I am aware that some people do not want to know, but for those of us that want to know it should be a standard test at the beginning.
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