Positive

My April 19 flow cytometry showed hairy cells again — 0.15% of my white blood cells, to be exact.

I would've been surprised if the flow had stayed negative, so this is expected. It means that I'll probably need to start rituxan after my 6-month followup visit to NIH on May 11. Depends on the results of the flow cytometry they do that day, plus the results of the bone marrow biopsy (I hate those...)

Not too worried about it. I've arranged to have all the treatments here at UM, so it won't be so stressful.  According to Dr. K, the side effect levels are directly related to the disease burden, so I should have very few and it shouldn't have much effect on my everyday life.

Had a pneumonia scare a few weeks ago, but it turned out to be only a bad cold and bronchitis that hung on for a while. All gone now except an occasional cough. Feeling pretty good, especally now that spring is here.

Test, again

• Hemoglobin 14.7 (WHO normal 14.0-17.3)
• Absolute neutrophil count 1.7 (normal 1.4-7.5)
• Absolute lymphocyte count 0.4 (normal 0.8-5.0)
• White blood cell count 3.3 (normal 4-10)
• Red blood cell count 4.74 (normal 4.5-5.9)
• Platelet count 200 (normal 150-450)

Excellent counts, except for the expected low lymphocytes. Doing well, feeling normal and strong.

Learned that they may not, in fact, treat me on May 11, since my current status is complete remission.

They'll do another flow cytometry on April 19. Flow results will come back around April 22; if I'm still at zero hairy cells in the peripheral blood, they won't start rituxan on May 11.

The default assumption is that hairy cells will reappear by April 19. But that's not a certainty. One of Dr. B's patients got a partial remission (like me) on the first round of treatment, went through another round of treatment 3 years later — and then had a complete remission lasting 12 years and still going! That guy was in the office earlier the same day as my appointment last week.

Dr. K confirmed that while it's rare to have a CR follow a PR, it's not unheard of.

And I wouldn't mind being unheard of.

Zero

• Hemoglobin 14.4 (WHO normal 14.0-17.3)
• Absolute neutrophil count 1.7 (normal 1.4-7.5)
• Absolute lymphocyte count 0.2 (normal 0.8-5.0)
• White blood cell count 2.4 (normal 4-10)
• Red blood cell count 4.47 (normal 4.5-5.9)
• Platelet count 175 (normal 150-450)

These counts are actually OK. WBC is low, but mainly because of the expected low lymphocytes; neutrophils (more important) are normal. RBC is just barely subnormal, within the error bar. Hemoglobin is just fine, thanks, and correlates with how I'm feeling, i.e. healthy and normal. Incredibly, I've only had one cold this winter, and it lasted less than 2 days.

But today's real news — came in last night from my NIH research blood draw last week — is the flow cytometry:

The patient has a history of hairy cell leukemia and is being evaluated post therapy. The white blood cell count is 12.4 K/uL with 10 percent lymphocytes and 13.1 percent monocytes (02/09/2011). There is no definitive immunophenotypic evidence of hairy cell leukemia. The B-cells are polyclonal with no evidence of atypical antigen expression.

Yow!

This doesn't mean the HCL is gone. It could still be (and almost certainly is) hiding in the bone marrow, since the flow cytometry only measures the peripheral blood But it does mean the levels are quite low now. They may go down even further before I start rituxan in May. That's what we want — rituxan's good at cleaning up stragglers, but not so good at the frontal assault.