Bahrman Bulletin

In addition to celebrating happy, happy birthdays last weekend in Portland, we had other cause for celebration.

The impetus for our trip was yet another trip to OHSU for an appointment with Dr. Mauro, my hematologic oncologist. (It still confounds me that I have an oncologist.) Periodic PCR (polymerase chain reaction) tests are the primary means of monitoring my disease (chronic myelogenous leukemia) and measuring the quantity of leukemic cells in my body. Our goal, since achieving a complete cytogenetic response (CCR) back in November 2009, has been to reach the next significant milestone—a major molecular response (MMR).

An MMR is a very significant milestone because of the long term survival rates among patients in that category. In 2006, Dr. Druker and others released a study showing that 100% of the chronic myelogenous leukemia (CML) patients who achieved an MMR within 18 months after starting Gleevec were free from progression to accelerated phase or blast crisis at 60 months after starting therapy. A sort of “safe harbor” as Dr. Mauro described it—a happy, happy place to be (all things being relative).

A PCR score of 0.10 or below is, by definition, an MMR. As you may recall, my scores rose significantly in early 2010 when I took a 5 week sabbatical from Gleevec after experiencing liver toxicity from the drug. After starting on Tasigna (“Plan B”) at the end of March, my score quickly fell back down to around 0.70—and then stayed there (with small bumps up and down) for far-too-long. This disease has taught me much about patience and perspective, but I still favor predictable and immediate results.

The past few months have been stressful as we actively debated switching therapy a third time, but I readily admit my gratitude during those conversations that we actually had several alternative therapies to consider (including Dasatinib and Ponatinib, both remarkable drugs). Since I seem to tolerate Tasigna so well, with virtually no side effects, and I don’t want to prematurely eliminate future options, we waited—more or less patiently.

And then the good news finally came this month… my latest PCR results are now down to 0.075—I’ve achieved a major molecular response!

Caveat: I did miss the 18 month window (the reference point in the study mentioned above) by about 6 weeks, but this feels like horseshoes where close counts. Since the class of pharmaceutical therapy that I’m on now has been the standard of care for less than ten years, there is no data on long term survival rates beyond five or ten years—but we hope (and expect) its effectiveness in managing CML will continue for 50+ years.

What’s next you ask? Well, never one to settle, my next goal is a complete molecular response (aka, remission). The PCR test is only sensitive down to 0.01, so a complete molecular response is anything below the level detectable by that test. Dr. Mauro cautions me that many patients never get to a complete molecular response, instead staying around the level I’m at now—but even in that case, those patients are often able to manage and maintain the disease at this level for an indefinite period of time. However, I certainly have no intention of stopping here.

Thank you, again, for your support—the prayers, the phone calls and emails, the small acts of extraordinary kindness and love. With your support, the extraordinarily efforts of the miraculous medical and pharmaceutical community, and capability and compassion of my health care providers—Dr. Michael Mauro, Linda Chalmers (at OHSU) and Dr. Ted Braich (at Bend Memorial Clinic), the improbable seems within reach.

This entry was posted on Wednesday, February 2nd, 2011 at 9:09 pm by Tom Bahrman and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.