Bahrman Bulletin

It’s hard to believe it has been over a year since I was first diagnosed with chronic myelogenous leukemia (CML). I am alive and well—very well. The levels of leukemia in my blood are falling, and I have more energy now than I’ve had at any other point in the past year. But I’m learning what it means to manage a chronic condition.

The primary test used to measure the level of leukemic cells in my body is referred to as PCR (polymerase chain reaction). As you may recall, my PCR score when I started treatment was 100.0. After three months, my score had dropped nominally to 97.0. But after six months, my score was down to 0.49—a very significant drop. At nine months my score was up to 0.87—my doctor (Dr. Michael Mauro) told me not to worry about it, he considered that a plateau, not a proression of the disease (easy for him to say). Turns out he was right, another four weeks later (on March 1, 2010) it was back down to 0.57. But the problem now was that my liver was in substantial distress—turns out the medication (Gleevec) was causing liver toxicity.

After five stressful weeks off all medication, while my liver healed, I started on Plan B. I’m infinitely grateful that not only does a Plan B exist, but that we also have a Plan C and possibly other plans, all available before the ultimate back-up plan—a bone marrow transplant (which is the only option for patients diagnosed with more advanced forms of this disease). And I’m further fortunate that my brother is a donor match should I need a transplant. But, call me an idealist… I’d prefer not to work my way through these options. I like having them available and not needing to use them. Anyway, I started on Plan B, otherwise known as Tasigna (aka nilotinib), on March 29, 2010.

Tasigna is a second generation version of Gleevec, developed by Novartis (the same manufacturer as Gleevec). It has been used as a second-line therapy for years, and will soon be approved for first-line therapy (meaning it may be used immediately upon diagnosis, rather than just after a patient has developed an intolerance to Gleevec). It has been proven to be as effective, or more effective, than Gleevec.

After being off Gleevec for five weeks, and on Tasigna for four weeks, I went in for my regular PCR test (on April 26, 2010). The results were disconcerting. My PCR levels were back up to an 11.0. A very rapid rise, but again my doctor was reassuring. We repeated the test three weeks later (on May 17, 2010) and the results were much better. It seems the Tasigna is working and my PCR level is now back down to 4.1—trending the right direction again.

We continue to watch my liver function closely (because it is possible for Tasigna to have the same side effect on my liver as Gleevec), with weekly blood tests. My anxiety levels rise and fall with the test results of my liver function, but so far everything is relatively stable.

I’m a fairly linear thinker. I like the notion of diagnosis, treatment and cure—all along a linear path without plateaus, complications and regression. But, I’m slowly (reluctantly) learning what it means to “manage” a chronic disease. And if it can be successfully managed, then who am I to complain or demand more?

Reflecting back on this past year, I’m extraordinarily thankful. Thankful for your thoughts and prayers. Thankful that I have multiple treatment options. Thankful for the talented and caring doctors and pharmacists who provided me with these options and treat me with candor, humor and compassion. Thankful for the relative ease of my treatment (compared to what it could have been with a more aggressive form of CML, or a different form of leukemia). Thankful for my life, and the time to live it with the ones I love. Thankful that my leukemia is being successful managed and justifiably hopeful that I’ll have many, many more years to be thankful.

Follow up posts to this entry:
  •  Major Molecular Response

It’s been a busy few weekends with trips over the mountains. For Mother’s Day weekend, we headed west to enjoy James Taylor and Carole King in concert. Aunt Suzanne upgraded our tickets so we were practically stage-side. And the fact that several people questioned if we were old enough to be there (the average age of attendees a few years older than we were), just made the night even more memorable! It’s not very often these days that I am considered young!

The celebration continued the next day when the Loebs came out to Gra and Papa’s for a birthday celebration. Gifts were exchanged, food consumed, and games were played. (Note the box of dolls labeled “Ryan’s Stuff.”)

On Sunday, Gra and Papa hosted us once again to celebrate Mother’s Day. Poor Mother did not get to sit back and relax as she prepared yet another wonderful meal for all of us to enjoy. And the sun shone brightly, making relaxing on the deck a great past-time for those of us fortunate enough to not be in the kitchen cooking.

Chiara received wonderful gifts from her cousins and grandparents. If you look closely in the picture above, you’ll see Mary sporting a cute orange t-shirt and black leggings. Chiara received the same outfit from Gra for her birthday. As soon as it was clean, she immediately picked it out to wear so she could be just like her cousin Mary.

Last weekend, we were back in Portland once again. We met with our doctor at OHSU to discuss Tom’s 12-month results. It’s hard to believe it’s been a year since his diagnosis. Our day-to-day life remains what it was before diagnosis, thanks to excellent care and treatment thus far. Tom is busy as ever with work and starting to make some time for exercise, now that his hemoglobin (and energy levels) have rebounded. Given how well he is feeling, we were surprised and disappointed to learn that test results were not as positive as they were earlier. In fact, his leukemia had made a comeback. We are hoping this is due to being off treatment to let his liver heal. Our doctor took more blood to confirm this hypothesis. In a week or so, we should know if the level of leukemia is going back down or if we need to look to Plan C.

Tom took Grandma Carolyn’s car out while we were in town and Chiara was intrigued. Here was a car just at her level, and climb in she did. We hated to inform Grandpa that Chiara calls the truck we borrowed, “Chiara’s big truck.” Apparently she is also vying for Grandma’s sporty car! Watch out, Grandma and Grandpa. I can only imagine what will happen when this girl turns 16!

It was the anticipated event of the year. Since Christmas, or perhaps a little before, Chiara started asking about when her Happy Happy would be. The familiar refrain, “After Gra’s happy, and Aunt Megan’s happy, and Auntie Em’s happy…” on and on, until FINALLY, we got into the month of May birthdays.

The day began with Chiara coming down to her new red wagon, almost suspended with balloons. She was thrilled as she went for rides around the living room.

A few hours later, Uncle Al and host-sister Eleonor arrived and the party officially began. Chiara blew out the two candles on her buttercup cakelets, devoured the frosting, and then we set about opening gifts.

It seems that Chiara picked up right where she left off at Christmas, tearing open paper, asking for some boxes to be opened immediately (like her new toy Violet, who knows Chiara’s name, favorite color and favorite animal, and sings to Chiara–a great hit from Uncle Al), and then moved on to the next package after a few minutes. She seemed to never tire of the joy of new toys and attention shining upon her from her family.

The celebration continued on Sunday when our neighbors hosted a BBQ dinner with the best smoked ribs anyone in the room had ever tasted. Six people were celebrating birthdays in the group, yet Chiara still managed to be showered with attention and gifts. Her new tiara graced her head for only a moment, Mommy afraid that it might go to her head if she wore it too long! And with magic wand in hand, no one knew what to expect. It was a magical celebration, though, as Chiara opened her new tea set, gave hugs to the neighbors, and enjoyed more cake and homemade strawberry ice cream.

We arrived home, full and happy, to find that our dear neighbor friend, Asia, and her mommy were by while we were gone and left another gift for Chiara. Chiara didn’t hesitate a second, but scrabbled to the gift and opened it to find her sweet new cuddly bear. She hugged it, taking it to bed with her. She definitely needed the good night sleep after the weekend of celebrations!

Another happy year begins for one happy, happy little girl.