Tuesday, August 24, 2010

Two steps forward, one step back?

A couple of weeks ago - Friday the 13th, to be exact - I had a blood test that showed the count of a particular type of white blood cell to be 0.7.  The normal range is 2.0 to 7.8.  When I started on the trial, the count was 2.29, I think; it's hard to tell, because each test site (DFCI, local hematologist, and a clinic on Long Island) reports the number under a different name.  The local tests report it as "GRAN".  The first test at DFCI called it "ABS NEUTROPHILS" (I think), but that doesn't show up on subsequent DFCI tests.  The Long Island clinic reported it as NEUT %, which was a percentage rather than an amount.  Anyway, my local hematologist felt that the 0.7 number was too low, and recommended holding the RAD001 for a few days.  The doctors at DFCI concurred, and asked for a re-test on the following Monday, which was when I went to the clinic on LI.  That test showed some improvement in the white blood cells.

I'm a little confused as to why I'm on hold, because the number has been bouncing around between 0.7 and 1.4 for several weeks.  The DFCI team expressed concern about the hemoglobin level as well, which was 7.7.  (Normal is 14-18, although I started the trial at 8.5 and have been below 8 since early July.)

A blood test yesterday showed results almost identical to the test on Friday the 13th, so DFCI is having me continue to hold the drug.  Adding to my confusion is that while the LI test showed improvement in the white blood cells, yesterday's test showed me back down again.  The local tests also report GRAN as a percentage, and if that's the same measure as the NEUT % on the LI test, the measure has gone from 21.0% (8/13), to 44% (LI), and back to 19.3% (yesterday).  How can that make sense, unless the test machines are wildly variable?

I'll be up in Boston next Tuesday, when they'll test me once again and see if I can get back on the drug.  Meanwhile, I'm worried that the progress I've made (as measured by the IgM levels) will be lost.  I'm also worried that I'll have to go off the trial, which will put me back in the position of having to decide on what treatment to follow next.

Whatever happens with that, I'm going to try to get the DFCI doctors to explain how to compare the white blood count results from the different labs.

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