Leukemia Survivor

CML survivor thankful for life-saving medication

Jen Zinkovich lives in Indianapolis, IN, with her Springer Spaniel, Baxter. She is an expert in computer programming and works for the educational products company, Herff Jones, as a Technical Lead. When she was diagnosed with chronic myelogenous leukemia (CML) in 2010, she could not initially locate other CML survivors. That led her to the National CML Society, where she currently volunteers as the Indiana State Representative and Indianapolis CML Connection Group facilitator.

 

My life with CML at the age of 27 is all about managing. I manage my medicine, my job, my activities and my constantly changing energy level. However, I’m not complaining! Thankfully, every day I take a medication that is saving my life — but I have to be wise how I use my energy because when it is spent, there’s no more that day.

The medicine I currently take is nilotinib (Tasigna), a second-generation tyrosine kinase inhibitor (TKI) that was approved in 2007. For those of us with CML, we are now living with a chronic disease rather than a terminal diagnosis.

I was diagnosed with CML in November 2010. My family physician ordered blood tests during an appointment. The next day while I was in a meeting with my boss, I received a call from my doctor and she told me she thought I had leukemia. She had made an appointment for me to see an oncologist in an hour. I was stunned.

I began calling my family to come with me to the appointment. I had previously lost my parents when I was 19 and 21 — both from cancer — so I was very familiar with the trauma and crisis of the disease.

Unfortunately, I was uncomfortable with my first oncologist because she had very limited exposure to CML in her practice. Because CML is a rare disease with approximately 5,000 cases each year in the United States (with just 10% of all cases found in people under 40), I preferred to find a doctor with more experience treating it.

My family is very research oriented and we spent the weekend researching CML. We discovered that there was a National Cancer Institute Comprehensive Cancer Center in our region with CML specialists on staff.

I e-mailed one of the senior CML oncologists directly, and he responded promptly! I was admitted to that facility the following Tuesday for a bone marrow biopsy. Later, I met with another CML oncologist, who I still see, and she was very knowledgeable and reassuring. She confirmed both the CML diagnosis and that I was in “chronic phase”, which is the least severe of the three CML phases.

She prescribed imatinib. It was fantastic. Within 5 weeks, my disease was in complete hematologic response. This was my first major milestone and meant my white blood cell count was normal. While taking imatinib, I had very manageable side effects with minor bone pain, some fatigue and a few gastrointestinal issues — but I had my life back.

After 3 months, I had a 40% reduction of leukemia cells in my body, but the drug wasn’t working as quickly as my oncologist or I wanted. At 6 months, I had not reached the recommended reduction rate, so it was time to change medicines. My oncologist advised me to switch to nilotinib.

I was very hesitant to change medications, as my body had adjusted so well to imatinib. To ease my mind, I consulted with a top CML specialist in another city. His confirmation of the plan helped me make the switch.

The positive aspect of nilotinib is that medically – I’m a star! At 3 months this time, complete cytogenetic response was achieved– my bone marrow was healthy with no Philadelphia chromosomes. At 6 months, in December 2011, I reached my next major milestone — major molecular response (measuring low levels of genetic material in the bone marrow) — so quickly it was unheard of. On the down side, the side effects of nilotinib have been brutal. The bone pain, fatigue and gastrointestinal issues are much more severe for me than they were with imatinib. I am committed to taking this life-saving medication daily and hope to soon reach complete molecular response, but it just comes with a lot of baggage.

I would not choose to have CML as it is a chronic disease and I’m on an expensive medication for life. It has, however, given me a better perspective and made me even more appreciative of my supportive family and friends. I have also developed wonderful relationships all around the world through the National CML Society. There is an amazing amount of comfort in communicating with someone who shares your diagnosis and can understand the challenges of managing all that comes with it.

 

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