From the day I started taking Gleevec pills to manage my chronic myeloid leukemia (CML), I understood I would depend on them for the rest of my life.
Or will I?
Things have changed more than a bit since I was diagnosed eight years ago and studies are showing there could be a drug cure for a disease thought to be incurable. The evidence is showing that this “treatment-free remission” isn’t likely to happen for everyone, but just the mere possibility was enough to send me cyber-scurrying for every scientific journal I could find.
I would be happy to not have to do an anti-nausea dance every night or worry that missing a pill will send my chromosomes into a frenzy. The latest research shows that some CML patients who’ve reached a deep long-standing remission may be able to stop taking Gleevec (imatinib) and have no recurrence. Two of the most well known CML medical experts have even said publicly they are optimistic. Woo-hoo!
But wait, this is my life we’re talking about. Research is just that – research. Here at The Leukemia & Lymphoma Society (LLS), we know that a promising compound has to weather years of study and numerous clinical trials before it emerges as a marketable drug. And in this case, it seems mind-boggling that someone would stop a drug that was hailed as a major medical breakthrough (making the cover of Time in 2001) and say, “I’ve had enough. Let’s see what happens.” Just because it worked for some people in French and Australian studies doesn’t necessarily mean it will do the same for ME.
Diane Balistreri of Hartsdale, NY, recalls her diagnosis and treatment for acute myeloid leukemia -- without a doubt the most difficult experience of her life.
“Hola,” I said playfully, as I answered my cell phone on a beautiful Saturday -- April 21, 2012.
“This is Dr. so and so. I’m calling because your blood work from yesterday is all out of whack.”
“What do you mean, ‘Out of whack?’”
“Your white blood cell count is high,” he said.
“It's at 63,000.”
“And what's it supposed to be?”
In that moment, while at a barbecue with friends, I knew that I had leukemia. I uncharacteristically fell apart crying, saying, “This can’t be happening to me!” He said specialists were waiting for me at Westchester Medical Center and that I needed to get there immediately. So with just the clothes on my back, I checked into the hospital to begin the most surreal experience of my life.
Within the next few days, I was officially diagnosed with acute myeloid leukemia (AML), a rare and aggressive disease that is treated with intense chemotherapy. The goal is to annihilate diseased bone marrow, thereby killing the leukemic cells too. Unfortunately, this form of leukemia often returns within two years, so a stem cell transplant is highly recommended.
The news was devastating and unbelievable, yet I felt a strange calm. I think I went into warrior mode -- relying on sheer determination, strength and positivity to assist my body in combating the illness.
Fortunately, the initial round of chemotherapy put the cancer in remission, and after some hesitation, I decided to go for a stem cell transplant. Four potential donors were found within weeks and one was a 9 out of 10 match – 9 out of his 10 blood proteins matched mine.
Diagnosed at birth with a rare leukemia, Eevie had a 17 percent chance of making it to age 2. Now 18 months old, she continues to defy the odds as she marks the same milestones as others her age.
Her parents, Brynne and Ryan, report that she is all smiles and is a very happy (and thankfully ornery) little girl. Eevie was assessed and dismissed from physical therapy as she is "right on track." She is walking around the house, trying to put on Mommie's shoes, and is saying multiple words. Eevie loves to make animal noises (mainly the tiger, her inspirational mascot) and growls often! She is a HUGE Minnie Mouse fan and enjoys hugging and kissing her Minnie as well dancing to the Mickey Mouse Clubhouse songs.Her parents are optimistic about her prognosis.
“I feel like I'm the luckiest mom alive,” said Brynne. “All of the odds say she shouldn't be with us and she is. What a gift."
As far as her study protocol, Eevie is nearing the middle of the maintenance phase of her treatment for congenital acute lymphoblastic leukemia (ALL). She is currently taking low-dose IV, oral, and intrathecal chemotherapy. Eevie still struggles with swallowing and thus remains on her feeding tube. She is working with a speech therapist once a week. She enjoys licking KitKats and Pizza crust, but that's about it.
Though research on congenital ALL is extremely sparse, one study reports that by this time in treatment, very sadly, 27 of the 35 babies in the study had passed (van der Liden et al., 2009). If Eevie lives to age two, her odds of beating the disease increase to 85-90%. Her parents are often reminded that she is at high risk for relapse and multiple side effects of her treatments (e.g., secondary cancers, growth problems) but they choose instead to focus on her incredible progress and fierce spirit.