[Greg H]

One thing you can confidently predict about MDS: it's unpredictable.

I'm writing this from the Same Day Surgery center at my local hospital, where I'm getting my usual monthly transfusion. Except, instead of the usual two units of packed red cells, I'm having three.

And it's not because they were having a buy-two-get-one-free sale!

My Hemoglobin, checked on Tuesday, was 6.9 -- the lowest it's been in a while, and well below the "usual" level for week four of my monthly cycle. Week 4 HgB numbers in recent months have been 8.0, 8.4, 8.3.

This low number on Tuesday wasn't a big surprise; I've been feeling pretty ragged for a week or so now. And my Week 2 number this cycle was 8.9, when it's usually over 9. I had hoped that result was an outlier.

This much quicker than usual Hgb depletion highlights one of the other predictable things about MDS: you're usually working with incomplete and faulty information when you try to figure out why unexpected stuff happens.

For example, my last two absolute reticulocyte counts were 47 and 35. That is way below the regular numbers I've been getting from my local lab, which have been well over 100. But the folks at NIH never believed -- and never confirmed with their own tests, those high retic numbers. So, I don't know whether the much lower retic numbers are real -- or the local lab finally had their machine calibrated.

My bone marrow biopsy at NIH showed that my Chromosome 1 abnormality had expanded to 85% of my cells, so maybe that's now approaching 100% and throwing heaps of sand in the gears of my RBC factory. But Dr. Olnes has never thought the dup1q was all that big a deal, nor was he all that concerned about the expanded clone, particularly given the small karyotype sample size.

Maybe I for some reason burned up some of my last batch of transfused RBCs through hemolysis. But the lab forgot to do the LDH study that might have shed some light on that possibility. And no new antibodies showed up this time in the type and cross match.

My copper is down to 60, but that's only 6 points lower than it was in February.

In other words, there's no telling.

So, we hope maybe the problem is just some anomaly -- like rough handling of last month's units breaking down the cells -- and we wait for the next two-week CBC, keeping fingers crossed for a result above 9.

MDS: predictably unpredictable.

Take care!

Greg