Hairy Cell Leukemia: A Pleasant Surprise...

It's been a week since my restaging appointment at NIH.  Those of you in the trial know the routine:  CBC bloodraw in Phlebotomy, MRI and ultrasound in Imaging, then bone marrow biopsy and aspiration (my tenth) in Out-patient Procedures.  Get an X-ray and EKG in between those appointments. 

Waiting for results over the past week was nerve-wracking.  I got the CBC results that day.  My platelets were down slightly.  All white counts were normal, but looked like they were trending down too.  Red counts were fine, and they had certainly been pulling their share during all the recent hikes I've taken. 

Recovering from a head cold, I thought maybe that could account for the slight dip I perceived in the platelets and neutrophils.  Last year, 18 months after my final Rituxan treatment, my bone marrow aspirate came back slightly positive (.08%) for HCL.  At the time, Dr. K indicated that it might come back negative in a year, but I didn't think it would.  I assumed the cells would double every 3 weeks, and I'd have 60 to 80 weeks before I would need to be retreated.  Enough time to maybe let me get into an inhibitor trial and avoid chemo, which suppressed my marrow much longer than expected when I was first treated.  Thinking about going back for retreatment and the possibility of another chemo was starting to wear on me. 

Well, I'm pleased to report that both my peripheral blood and bone marrow aspirate flow results were negative for hairy cell leukemia - providing further data to show that using Rituxan to treat minimal residual disease (MRD) may allow the body to get an upper hand in keeping the disease in check.  In my case, chemo didn't get me into a partial or complete remission (CR), and a first cycle of Rituxan at 6 months post chemo to treat continued HCL infiltration allowed me to get a short-term CR.  A year later, when MRD first appeared, the second cycle of Rituxan had the opportunity to knock out what remained.

I've been in CR ever since that final treatment, and now there's no evidence of HCL at all!  My body is keeping it in check and appears to have eliminated the small amount that was detected last year.  Although the PCR lab was never able to clone my hairy cells to perform the hyper-sensitive MRD test and determine if HCL is completely eradicated from my body, I'm elated that I appear to have the upper-hand at this point.  The only supplement I take is 1000 IU of Vitamin D in the winter.  My diet is relaxed and normal, just no junk food or soda.  My ultrasound tech said my liver was now "textbook" and no longer fatty like it was when I was first diagnosed.

I couldn't have gotten to this point had I not participated in the NIH trial for newly diagnosed HCL patients.  I'm eternally grateful to Dr. K, Rita and the fantastic team at NIH.