Reprieve

• 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.

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.

Undead

• Hemoglobin 12.7 (WHO normal 14.0-17.3)
• Absolute neutrophil count 3.4 (normal 1.4-7.5)
• Absolute lymphocyte count 0.3 (normal 0.8-5.0)
• White blood cell count 4.6 (normal 4-10)
• Red blood cell count 3.91 (normal 4.5-5.9)
• Platelet count 183 (normal 150-450)

Almost a month since my last post (blog followers, sorry about that). I am undead. Not a zombie — just not dead.

All kinds of things have happened, of course. Went back to the NIH for a bone marrow biopsy and a cardiac MRI. Here's the BMB report:

Cellularity is 40-90%. Megakaryocytes are adequate. M:E ratio is 2:1. Myeloid and erythroid maturation are progressive. Immunohistochemical staining shows infiltrate of atypical lymphoid cells, which are positive for CD20, CD79a and TRAP and involve less than 10% of marrow. Aggregates over 25 B-cells are not present. CD3 staining shows mild increase in T-cells (CD20=CD3). 

I won't try to translate all of this — main thing is that the percentage of bone marrow with HCL in it went from about 80% to 10% in a month. That's pretty good. In the peripheral blood (that's the circulating blood, as opposed to blood in tissues), HCL dropped from 15.3%  to 0.03% on flow cytometry. It should continue to drop steadily over the next few months, until my next BMB in May just before I start rituxan treatments.

The cardiac MRI showed nothing significantly wrong with my heart.

Blood counts are looking pretty good. I had another test two days before the one listed above and it was even better; hemoglobin at 13.5 and lymphocytes at 0.4. Lymphocytes will probably stay in this subnormal range for the next 2 years, an expected effect of cladribine. Fortunately there do not seem to be any clinical consequences.

No more blood tests for a month! After well over 300 needle sticks since September, I am really looking forward to not being stabbed in the arm for a while.

As for how I’m feeling: most symptoms are gone or much diminished. No night sweats. No longer hearing my pulse most of the time. Occasional nighttime leg cramps and headaches, but they're very minor compared with a month ago. A chest x-ray last week showed that the pneumonia in my left lung has finally cleared, much to my relief since if it hadn't they were getting ready for another CT scan and antifungals.

The one thing nagging at me right now is a minor, hardly noticeable ache in the left side of my ribcage. I mentioned this to Dr. Washer when I saw her on Monday and it cost me 6.5 hours. If you're over 40, you cannot walk into a hospital and say "chest pain" without ending up in the ER being evaluated for a heart problem. But the cardiac enzyme tests were negative, and since I've already had a heart stress test and a cardiac MRI, both negative for heart problems, they decided it was probably musculoskeletal and released me. Probably it's either (a) a side effect of the pneumonia or (b) related to starting up yoga and weightlifting again after a couple of months of being mostly idle. I've been doing a lot of backbends, which really stretch out your ribcage, so it could be strained intercostal muscles or connective tissue. It's strangely persistent, though, and hard to localize. If it keeps up for another week or 10 days I'll have it checked out. I'm still on Bactrim and acyclovir, prophylactics for pneumonia and shingles, respectively.

Best thing is being back at work. I'm teaching two courses, finishing off the process of leading some job searches, writing some short pieces. Feeling good about all this, though it's stressful, and looking forward to truly complete recovery, which is probably still a few weeks away.