Gleevec Is Saving My Life but at a Cost

The consequences of CML are both physical and financial, but I’m grateful to be alive.

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Having chronic cancer has been challenging, but I have no regrets. Just the opposite, I feel so lucky to have been diagnosed in 2007, 6 years after the U.S. Food and Drug Administration approved imatinib in the treatment of CML.
— Jim Turner

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Like many patients in the chronic phase of chronic myeloid leukemia (CML), my cancer was discovered during a routine physical, when an off-the-chart white blood cell count signaled a serious problem that my primary care physician attributed to unspecified internal bleeding. Fortunately for me, my wife, Becke, is a registered nurse and questioned whether the blood test actually showed a symptom of leukemia.

Despite the assurances from both the physician and his nurse “not to worry; this is not leukemia,” Becke made an appointment for me to see a hematologist-oncologist she had met at a business function. Every year, this oncologist holds a Celebration of Life party for his patients and their families, and he invited us to attend the event. During the party, he took me aside and asked whether he could examine me in his office, which was outfitted with laboratory equipment. Ten minutes after drawing a blood sample and studying the test results, he said he thought I had myelodysplastic syndromes. A bone marrow biopsy later confirmed CML. I thought my life was over.

On Borrowed Time

That was 9 years ago, and having chronic cancer has been challenging, but I have no regrets. Just the opposite, I feel so lucky to have been diagnosed in 2007, 6 years after the U.S. Food and Drug Administration approved imatinib in the treatment of CML.

My oncologist told me that before imatinib was discovered, patients with my cancer had a life expectancy of just 3 to 5 years. And while I have severe side effects from the drug, including stage II renal failure, constant fatigue, and muscle pain so intense it brings me to tears, I don’t believe CML will kill me, and I try to balance the negative effects of the medication with the chance it has given me to live a fairly normal life and spend precious time with my family and friends. I feel I’m on borrowed time, and every day is a day I wouldn’t have had without the treatment, so I don’t want to waste a minute feeling sorry for myself.

The Cost of Cancer

There are, however, very real financial consequences to contend with. Imatinib is expensive, $12,000 for a 30-day supply, and as long as I’m working and have private health insurance, I’m able to meet the $250 per month copay. But at 64, I’m starting to think about retiring, and I’m not sure how I will cover my medical expenses once I stop working full time. In the meantime, I try not to dwell too much on the future and instead relish the moment I’m in. When you are young, you feel invincible, and death is an abstract concept. I actually still felt that way until cancer gave me a wake-up call, and now, with more years behind me than in front of me, I appreciate the gift of living in the moment cancer has given me.

In addition to a renewed vitality for life, cancer has introduced me to the most wonderful, selfless people I have ever met, especially my oncologist. When I was first diagnosed, he gave me his home phone number and e-mail address and encouraged me to contact him with any questions or concerns I had. His compassion saved me from despair and continues to steady me when the challenges of having chronic cancer become overwhelming.

In the early days of my diagnosis, he listened as I expressed my fears and complained about the treatment side effects and unfairness of cancer. He made me a partner in my care and has never said, “This is what we are going to do” but rather, “Here are our options; what would you like to do?” There are no words to adequately express how I feel about him and what his friendship has meant to my family and me.

Appreciating Life

I’ve had CML for more than 9 years, and I know at some point, cancer, my comorbidities of chronic obstructive pulmonary disease and emphysema, or old age will take my life. I’m holding out for old age. Until then, I’ll continue to get up every morning grateful for the day, whatever it brings. ■

Mr. Turner is a computer programmer analyst and lives in Irmo, South Carolina.




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