I keep my CLL history -- things like CBC results, FISH tests with xeroxed blotches that are supposed to signify something, lengthy dissertations by experts and not-so-experts upon my condition -- in file folders, organized by year.
The year of diagnosis, 2003, doesn’t have much in it. By now, in 2008, the files are 2" thick when stacked on top of one another. The year 2007, in which autoimmune hemolytic anemia greeted me like the Huns greeted Rome, accounts for fully half that thickness.
And speaking of thick, let’s open that file for a minute, shall we? I recently got the complete physician’s notes from Dr. O’Leary, the man who managed, and then mismanaged, my AIHA. O’Leary was nothing if not thorough in these reports, each titled “Follow-Up Office Visit” and most of them making reference to my node-filled “bull neck.” Well, moo. Or snort. Or something.
I remember a couple of times during these visits talking to O’Leary about my haptoglobin, a protein that people hip to the terminology abbreviate as “hp.” When your hp tanks, as measured by a blood test, you’re in trouble. When red blood cells are actively being destroyed, hp disappears faster than it is created.
I had noticed, at one point during my travels, or travails, that my hp was declining, even though it was within the “normal range” (or “reference interval”) of 34 to 200. I had the sense that this could be a problem, and I asked O’Leary about it. He replied that there was no need to worry, it was within the normal range.
Later that day, after I left, he made his dictation, which contained this comment:
“We discussed at length his other laboratory tests. His haptoglobin remains normal, although it is drifting down a bit. It was around 170, then it was 67 and now it is down to 49, although it is normal.”
Well, you guessed it: It continued to drift down. Four weeks later all hell broke loose and the AIHA was pounding at the city gates again.
There are a number of lessons to be learned here. One: Patient, trust your intuition. Two: Just because a result is “normal,” that does not mean an important trend can’t be identified and appropriate action taken. Three: I really wonder whether O’Leary should be practicing medicine. In the United States. On people. (Drifting down “a bit”!)
But let’s focus on number two: Reference intervals, normal values, and the like are not licenses to not worry.
Some of this depends on what is being tested: ZAP-70, for example, is positive once it passes a certain point, usually 20%. It doesn’t matter whether you are 22% positive or 82% positive, you are positive. As far as I can tell, and I once asked Dr. Terry Hamblin about this on the ACOR CLL List, the level of positivity does not count as much as the fact that you are positive.
Red blood counts are another matter. Many of us see our hemoglobin drifting down as the disease progresses, a result of marrow impaction. Your HGB might be 15.6 one year, 14.3 a year later, 13.1 a year after that. These numbers are all within the “normal range” but they signify a trend that tells us something important.
The same is true with haptoglobin. That is the point of this post. In your test results, look for trends. Do not be lulled into thinking that just because the result is still “normal” that you don’t have anything to worry about. (I know it is especially hard to argue with doctors about this sort of thing. O’Leary may have thought I had a bull neck, but I think he was bull-headed; he tended to dismiss my concerns, which almost ended in disaster, and which did end with me switching doctors.)
I have alerted Dr. Belle to all this, and we are watching my hp for any signs of a downward trend. We are also keeping track of my LDH, which would increase with hemolysis, and my bilirubin, which would do so as well.
And so far, so good. I continue to show improvement in the red counts, which are either "normal” now, or tantalizingly close. The icing on the cake is that my lymphocyte count has slowly drifted downward since my last cycle of chemo four months ago.
My only discomfort is in knowing that somewhere out there Dr. O’Leary is telling a cancer patient not to worry, that their test results -- despite evincing a trend that, if it had a mouth, would bite them -- are “normal.”
I've go to admit it's getting better: More good news about my CLL (chronic lymphocytic leukemia) - Most of my blog posts can be followed here. The full story of my CAR-T therapy, the incredible rollercoaster and the amazing results can be found there I...
3 days ago