Tuesday, October 28, 2008

The joy of Coombs negativity

Been busy here. Kitchen remodel + Ikea = eating too many Swedish meatballs after tramping around a football-field-sized maze of furniture where everything has names like Akurum, Famtid, and Wurm. Me, Marilyn, and half of Phoenix were there on Sunday. Soylent Green is people!

The good news is that I am healthy enough to endure the experience
, which is not unlike a Bataan Death March through a pressboard jungle where gibberish is the lingua franca. My hemoglobin is 14.7, more than double what it was a year ago when I was in the throes of autoimmune hemolytic anemia (AIHA). My RBC is 4.72, hematocrit 41.2. All are well within the normal reference range.

The big cherry on this red blood sundae is that my last two Coombs tests have come up negative, which means the AIHA beast is in its cave, unlikely to show up in the dramatic fashion by which it attacked me last year. Converting to Coombs negativity was my not-so-secret hope when I underwent R+C(V)P therapy for AIHA and CLL, which commenced on October 22, 2007. Conversion took so long to happen that I thought it wasn’t going to. And then on August 19 it did. And on October 7 it did again. (I am a believer in the “make sure you get two tests to confirm a trend” school of blood draw divination.)

According to a study b
y Dr. Kanti Rai, et al of CLLers with AIHA treated with a similar protocol to mine, conversion to Coombs negativity led to a mean response of 23 months, as opposed to 8.8 months for those who remained Coombs positive. “This finding that Coombs conversion portends a longer duration of response suggests treatment goals for AIHA should be a conversion to Coombs negative, and not stopped with recovery of HGB,” the authors wrote.

Well, I’ll be damned, pass the lingonberries and po
ur some Absolut in my Ljuvlig, I am one of the lucky ones. I am also lucky in that I achieved this following just three rounds of chemo (not the five or so that most of Rai’s patients had). And that my absolute lymphocyte count is 8.9 a year later, much lower than I ever thought it would stay.

The imperfect part of the picture is that the lymph nodes began to return, slowly, around June and July. This follows the typical pattern of 11q-deleted disease, where the CLL collects in the nodes. They aren’t as bad as they used to be, but they’re there, a definite reminder that CLL relapse after chemotherapy is, like getting a Florvag for your Tolga, inevitable.

Nonetheless, I am for the moment enjoying a satisfying, quiet victory over the most acute medical crisis I have ever faced. My saga is a reminder of how easy it is to take the fundamentals of health for granted, and what a long and difficult slog it can be to return to a simple, functional state.

There are two lessons I am taking away. One is that things don’t always g
o by the book, that statistics are general but results are individual. By all counts, my response to therapy shouldn’t have been this good. Rai’s patients were Rituxan-naive; I certainly am not, and I had fewer rounds of chemo than they did. Two is that I believe controlling my AIHA is directly proportional to controlling my CLL; when time comes again for treatment I am going to make sure there is at least as much punch to it as there was before. The days of single-agent Rituxan as a means of controlling my CLL are almost assuredly over.

The nice thing about a remission is that I don’t think about these things that much right
now. Instead, I ponder what to do with the three extra inches on the wall over the sink, what color granite goes with Adel medium brown, and whether to put a Luftig over the Mumsig.

Had I tried to make it through Ikea this time last year, when my HGB was 6.8, they would have had to carry me out on an Ektorp.


goodydogs said...

David - I check your blog every day. It's inspired me to start my own spot where I can share my joureny


Hope you'll check it out when you get a chance.


David Arenson said...

Congratulations, Bonnie. I'll check it out. I love the title!


Pat said...

Hi David,
I didn't know that one could move from Coombs positive to negative? It just didn't occur to me to ask. Now, I am curious about whether I too have changed to negative....if there is no detectable evidence of CLL in peripheral blood, should I assume that I am Coombs negative, too?

Anonymous said...

Glad to hear the latest news, David. As I've indicated several times before, it's all like a big roulette wheel. That's not a comforting thought when one is perfectly healthy, but when one is dealing with something like CLL the apparent randomness of fate offers room for hope.


David Arenson said...


My guess is that you may be Coombs negative, but you should have a test to find out for sure. AIHA is present in those without CLL, so lack of CLL is no guarantee of Coombs negativity.


Randomness is a major player in CLL. On some level, it all boils down to luck. Some people survived the sinking of the Titanic. Others didn't. Some of it was just pure amazing luck.

Anonymous said...

Its great to know that you are feeling so much better .Good luck with your renovations and try to lay off the lingonberry sauce!
love always,

Ronni Gordon said...

Hi David,

I am visiting via "A Pastor's Cancer Diary" and am finding your blog very impressive! It's interesting that most of the aspects of CLL, the abbreviations and treatments etc., are so different from what I've gone through with AML (and am currently blogging about). Of course there is much in common too. Like you, I've recently been focusing on furniture. Repainting the living room, buying a bookcase, moving stuff around...very good distractions but also kind of costly!

I'll check back in again.