Tomorrow we'll see Dr. B for the first time. It's my first hematology followup since starting chemo two weeks ago. Dr. B is a leukemia expert with an outstanding reputation, so I'm hopeful.
Here's what I want to know:
- What does he think about whether eradicating minimal residual disease might improve my long-term chances? Minimal residual disease (MRD) basically means some tiny number of remaining HCL cells, detectable by flow cytometry or PCR, the most sensitive tests we now have. "Eradicating" doesn't really mean it; they're really talking about reducing the levels below the threshold of measurement. In a Scripps study, 50% of HCL patients with MRD relapsed, but only 6% without MRD relapsed. However, other studies failed to find a link between presence of MRD and relapse rates.
- My CT scan shows some problems in the marrow of the femur head and neck, probably on both sides. Might be leukemia, or something else, or both. The radiologist recommended following up with MRI and dedicated X-rays of that area. When do we do this — now, or after the treatment has had a few more weeks to normalize? What could these results mean?
- 2-CdA can produce very long term suppression (several years) of CD4 T-cell counts. What are the clinical implications? Will I be immune suppressed, and if so, how and how much?
- What the hell is this dime-size spot on my right shin that's been itching sporadically for 2 weeks?
Took half a Valium last night. (Dr. F had OK'd that last week.) Slept the sleep of the dead until 9:30 AM. Felt great for an hour, then collapsed again. I went back to bed and slept deeply until 3 PM, thanks to our great friends Susan & TR, who spirited Luka off for 4 hours to bake Tollhouse cookies and watch videotapes of 1930s Betty Boop cartoons. Around dinnertime I started to perk up, but I'm ready to sleep again as soon as I post this. Some combination of the Valium and yesterday's workout.Yawn. Night-night everyone.
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