[Greg H]

This extra-long post (which I will divide into a couple of parts) may well be the climax, if not the denouement, of the continuing saga of my experience with the NIH trial of Campath for MDS -- though it certainly won't be my last post here.

You may recall that, when I checked in early this month for my usual fourth-week CBC, I posted a hemoglobin count of 6.9, instead of the expected 8.0. That resulted in a three-unit transfusion to get me back into decent shape.

Eleven days later, my CBC turned up an 8.2, leading me back to Same Day Surgery for a two-unit RBC transfusion just two weeks after the last one.

Conferring with the Campath trial's Principal Investigator Dr. Matt Olnes, I sense that he has reached the conclusion that I am, in fact, a bona fide "non-responder" to the therapy.

If had responded "robustly" to the drug, then we'd probably try cyclosporine. Dr. Olnes explained that about half the folks who have a good response to Campath, and then relapse, respond to cyclosporine. But cyclosporine hasn't proven effective for non-responders. Given the side effects, it doesn't make much sense for me to try it.

So, what do we do now?

The answer falls into two parts: finding out what's up and, then, deciding what to do.


Diagnostics

Our first step, Dr. Olnes suggested, is to make sure this sudden drop in hemoglobin isn't the result of some anemia unrelated to my MDS. So I had both B12 and Folate checked, and both are well within normal ranges. Iron isn't a problem, given iron build-up from my frequent transfusions.

Before I was first diagnosed with MDS, we ruled out GI tract bleeding with an endoscopy-colonoscopy. Dr. Olnes felt that bleeding is not likely the cause of my sudden hemoglobin drop, because my reticulocyte count has fallen as well. Normally, a loss of blood would lower hemoglobin but increase reticulocytes, as the marrow tries to make up the losses.

Though I understand that reasoning, and have no signs of GI tract bleeding, I may nonetheless book an appointment with my family doc or GI doc, just to be sure. I'll consult with my local hematologist about this first.

Most important, Dr. Olnes said, was to repeat a bone marrow biopsy, even though I had one in May that showed no significant change. We need to make sure something hasn't come up that would explain my change in symptoms. We'll do cytogenetics, of course, as well as a FISH analysis of Chromosomes 5, 7, 8, 13, & 20, which Dr. Olnes indicated are the standard areas to check in MDS. If a FISH probe is available for my rare Chromosome 1 problem, we may check it as well.

We'll do FISH because it utilizes a larger sample size than the standard karyotype analysis, making it more likely to detect an abnormality present in only a small number of cells, as well as providing a more reliable indication of the proportion of my stem cells that are defective.

Assuming my local hematologist agrees with all of this, we will likely do the bone marrow locally rather than at NIH. My luck with NIH bone marrows hasn't been all that great; and pretty much everyone, including NIH, sends their cytogenetics and FISH out to one or another of a few big commercial labs.