Monday, May 16, 2011


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:

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.

Monday, May 2, 2011


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.

Wednesday, March 16, 2011

Test, again

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.