Bahrman Bulletin

Marvelous words! I had my 6 month follow-up appointment with Dr. Michael Mauro at OHSU today, and the news was very good.

In case you’re a little behind the information curve, I was diagnosed with Chronic Myelogenous Leukemia (CML) in May 2009. A shocking diagnosis, given the rarity of the disease in people my age. And extremely concerning, given the apparent advanced stage of my disease upon diagnosis. However, quite fortunate in certain respects, because CML is one of the most treatable forms of Leukemia and the phase of my disease was less advanced than initially feared. So, I began the standard regiment for people with chronic phase CML–an oral drug commonly known as Gleevec.

At the three month mark, still in some discomfort from the disease and the side effects of the drug, I had a round of testing which determined I’d achieved a “suboptimal response.” Stressful, but we kept our hopes up and increased the dosage of Gleevec.

November 9 was the six month mark–from the date of initial diagnosis. And I went in for another round of testing. Namely, PCR, FISH and cytogenetic testing.

Today, completely free of pain and slowly regaining my physical stamina, we received the results of those tests. Please forgive me while I bore you with a few details…

The four general stages of treatment are: hematologic response, cytogenetic response, major molecular response and complete molecular response. A hematologic response means that blood cell counts have normalized–most patients achieve a hematologic response on Gleevec. A cytogenetic response means there are no Leukemic cells (Ph+ cells) that can be detected by the FISH and cytogenetic tests. PCR is a very sensitive test that looks for Ph+ cells (the trademark of CML) in the blood. When initially diagnosed, the average patient has a 100 (int’l scaled) score on the PCR test. That score usually drops to around a 1.0 when the patient achieves a complete cytogenetic response. And when the PCR score drops to 0.1, the patient is deemed to have achieved a major molecular response. Achieving a major molecular response within the first 18 months of treatment is important, because most of the patients that achieve that benchmark remain “free from progression” to more accelerated forms of the disease five years later. (Gleevec is still a relatively new drug, so we don’t have a lot of data beyond 5 years out.) A complete molecular response usually means a score less than 0.01, a level below what the lab is able to detect in the patient’s blood–what is called “remission” in cancer terminology. Unfortunately, Gleevec is not a “cure,” so patients who are successful on the drug usually remain on the drug indefinitely to stay in remission.

My PCR score on 5/20/2009 was 100–coincidently, perfectly aligned with the international scale. My PCR score on 8/10/2009 was a disappointing 97. My PCR score on 11/9/2009 was an exhilarating 0.49. The results of the FISH and cytogenetic testing, I obtained today, confirmed no detectable levels of Ph+ cells in my marrow, meaning that I’ve achieved a complete cytogenetic response and am well on my way to a major molecular response. Ya-hoo!

Thanks for all of your thoughts and prayers, they’ve meant a lot to Amy and me, and I’m sure helped achieve this response. Please keep them coming…

My doctors and I remain very optimistic about my prospects for further treatment on the same dosage of Gleevec. And I hope to report back even better news in the next six months of treatment.

Follow up posts to this entry:
  •  One Year Later… Alive and Well
  •  Major Molecular Response

Every day is a new adventure in toddler-hood. Chiara is full of tricks, from repeating every word one says to climbing out of her crib. (Fortunately, she hasn’t tried this new trick without mommy standing near enough to catch her!) Just before nap-time today, I asked Chiara to pick a book to read. She took her little baby doll over to the book shelf and talked to the baby doll, asking her to get the book (I am assuming…her quiet babbling to the doll was a little challenging to understand). Then, she took the doll’s arm and reached it up next to the book spines, showing her how to pick a book, yet without actually retrieving one. Once again, she guided the doll’s arm to the spine of a book and pulled it down (courtesy of help from Chiara). So cute to see her teaching her little doll. (Not to mention pretty smart…her antics got her one extra book for the doll, prolonging the time before nap!) One just hopes she is as helpful when real people are involved!

Ireland was wonderful. Even with almost 2 weeks touring the island, we left with many sites left on our “to-see” list. The people were so warm and inviting, the landscape lush and green, and the food was quite tasty! The castles and stone ruins dotting the countryside made it all seem somewhat dream-like. (As in the photos below at Blarney Castle and Glendalough.)  But, alas, it was time to return home. And I have to say, I was excited to do so.

Chiara and Becca had a good time with Grandma, who seemed no worse for the wear! Days were filled with walks, swinging, bubbles, trips to the library, and coloring. They aren’t the events that typically fill a blog, but after being away, I am enjoying the simple gifts that a small child shares even more. Hearing Chiara say “Mommy home,” is music to my ears! After every trip, there are mountains of laundry to be done. Yet those mountains just keep growing in our closet, because for now I am enjoying time with my little girl too much to worry about the mundane tasks like laundry.