HARMONY: It was a whole new vocabulary for me, from high school biology, you know, "There are white cells, there are red cells." That's kind of where I started with it. And then, as with any new adventure, which this has turned out to be, there's a vocabulary that's gained over time and an understanding of how things work together.
ANNOUNCER: Harmony George Jaursch's learning curve started just as the winter rains of Portland, Oregon, were clearing for spring.
HARMONY: It was May of 2000, and I noticed a lump in my abdomen. And at that time, I had kind of a stomachache that day and I thought, "Oh, you know, something's up with that," and I waited two or three days and went to the doc.
MICHAEL MAURO, MD: Well, once they recognized that her spleen was enlarged, she did have some standard blood work done, and her white blood cell count was very elevated. At presentation it was about 175,000, and normal is about 5,000 to 10,000. As well, her platelet count was measured and was also elevated. Not terribly high, but, I believe, in the 600,000 to 700,000 range. So she had many of the classic presenting signs and symptoms for CML.
HARMONY: Well, pretty panicked. I had at that time my boys, our twin boys, were two and a half. And the median life expectancy with CML at that time was six years. So that was pretty tough stuff to deal with. And there was a brief moment of "Why me?" and then a long time of, "What next?" "What to do now?"
ANNOUNCER: Harmony was young enough when diagnosed with CML, or chronic myeloid leukemia, that she and her doctors could consider the only "cure" for the disease: a bone marrow transplant.
But then a donor fell through, and Harmony re-evaluated her options, for transplants are risky.
HARMONY: I discovered through, actually through the Internet, that there were some trials being done here on a really promising treatment for exactly what I had, and the doctor that I'd been talking to about the bone marrow transplant was familiar with those trials.
ANNOUNCER: The drug was Gleevec, known then as STI-571. Harmony joined the study and, by the luck of the draw, was placed on Gleevec rather than on the traditional treatments of interferon and ARA-C.
MICHAEL MAURO, MD: And within a few weeks' time she saw normalization of her blood counts, which is right on target. And that was the first good sign.
HARMONY: When my results came back and it was within a month that my disease was beating a very hasty retreat, it was a tremendous relief to me.
ANNOUNCER: Those first tests were important, but other therapies usually accomplish the same thing: a normalization of blood counts.
A more significant finding would come with tests that checked for signs of the abnormal Philadelphia chromosome. That took more time.
MICHAEL MAURO, MD: At three months she had her first bone marrow test, and we had good news right away in the first three months because she had what was called a major cytogenetic remission or response. And that's where out of the 20 cells that she had originally, and they were all positive, now the majority of them were now normal. And she still had some Philadelphia chromosome–positive cells, but most of them were now normal. And at three months, that's a very good sign, to have corrected that much that early.
HARMONY: Every day from the time I was diagnosed until about that time, the first word that came into my mind was leukemia. Every morning. And after I became aware that even my bone marrow was really responding very well to this drug and I heard about others doing very, very well on this drug, then I started to think about other things and started to think longer term again. And at this point, you know, I really don't think about leukemia very much anymore.
ANNOUNCER: More sensitive testing followed, with a technique called in fluorescence in situ hybridization, and then with still more sensitive molecular tests, known as PCR.
MICHAEL MAURO, MD: If we look at her numbers over time, what we've seen is that she had a very prompt blood remission, cytogenetic remission. And at times she's actually had a PCR that's been undetectable. It seems that it's below the level of detection of our tests. She's either very close to or below the radar screen, as I like to tell her, and with regards to the PCR test, and that's been quite stable.
ANNOUNCER: As Harmony continues to undergo therapy for CML, she has learned a great deal about blood tests and genetics.
MICHAEL MAURO, MD: I think people do need help understanding what a chromosome abnormality means and how it's related to leukemia.
ANNOUNCER: And while not "cured," Harmony's CML is under good control. And she's found the time she's taken to learn about tracking her disease has paid off.
HARMONY: When options are presented, you can understand them more clearly. When there's a change in the blood work, if you know what that means, then you can be intelligent about the questions that you ask and how you receive the answers and what you choose to do.
It's just useful to know how a bicycle works if you're going to ride one. And while I'm certainly not a technician on any of these issues, it has helped me feel more like I can make good decisions to do the work, to learn how to understand things when an option is presented.