- Hemoglobin 14.1 (WHO normal 14.0-17.3)
- Absolute neutrophil count 2.25 (normal 1.4-7.5)
- Absolute lymphocyte count 0.34 (normal 0.8-5.0)
- White blood cell count 2.93 (normal 4-10)
- Red blood cell count 4.68 (normal 4.5-5.9)
- Platelet count 158 (normal 150-450)
Went back to the NIH last week for another round of tests. Since flow cytometry on April 19 was slightly positive (0.15% HCL in the peripheral blood), everybody was expecting I'd be positive again on May 11 and I'd be starting 8 weeks of rituxan on May 18.
So I got started planning for it, and a whole new round of communication snafus with my UM doctor ensued. Too boring to tell here, but wow is this communication system messed up. It's exactly like a game of telephone: I speak to the nurse, who speaks to the physician's assistant, who maybe speaks to the doctor but usually doesn't. The PA speaks to the nurse, who speaks to me. The cycle takes two or three days if it works (and the callback rate is only about 70 percent). Almost every time, some important piece of information gets garbled or ignored. My final trick — on a doctor friend's advice — was to email the doctor directly. That produced an immediate (though quite irritated) response.
The problem is that there's no system for handling what I'm doing — a clinical trial at one institution in another state, with some of the treatment and followup here. They each have their routines, and they're not compatible. And exception handling is not the strong point.
But anyway — on to the good, no, the great — no, the amazing news. After all that, the flow cytometry on May 11 was negative for HCL. That's not the end of the story; it's the bone marrow biopsy that's definitive. Dr. Kreitman's email:
Paul:
Congratulations are in order in that your bone marrow is consistent with a complete remission! There are some B-cells which could be minimal residual HCL cells in the marrow but they are very few in number. Since the blood flow cytometry is negative and your counts are also consistent with complete remission, you would NOT get rituximab at this time and instead we would monitor your blood flow every 6 months.
Best wishes and congratulations!
So it's over, for now. I'm very relieved. I wasn't anticipating problems, but there's no denying that Rituxan is a very serious drug that can damage or kill you. The longer I can put off taking it, the better. No telling how long this remission will last, but in some people with complete remissions— at least 9 out of 350, in one long-term study — it never comes back. (Dozens of those 350 patients were lost to follow-up, so we don't know how many of them may also have never had a relapse.)And it's summer. Though you wouldn't know it here in Ann Arbor, where it's 45 degrees and raining.
