Taking control of your cancer diagnosis

It was the summer of 1996 and Lauren Westbrook was 45 years old, separated for two years and divorced for one. She felt she was in the best shape ever, beginning a new job and enjoying the single life. She worked for the transportation department of a school district and had changed job descriptions from that of a school bus driver to secretary for the Director of Transportation. Her plan was to brush up on her administrative skills and eventually move on to bigger and better things. She felt that she had had a tough few years with all the changes, but she always told herself: "Everything will be all right. At least I have my health."

Westbrook's days were spent preparing for the new school year with all of the paperwork necessary for the new and current bus drivers. The days were long and hot where she lived in Texas and for her, the weekends couldn't come soon enough. After a few especially fun and active weekends out with friends, Westbrook admitted to herself that she was feeling a little tired and had an achy elbow. She also noticed that her blond hair seemed to be shedding more than usual, and that she had night sweats; however, she thought she was probably premenopausal, processing her hair a little too much, and since she did all the yard work herself, had likely strained her arm lifting a bag of grass clippings. There is always a reasonable explanation, she told herself - after all, she always said she had her good health.

But three weekends in a row, Westbrook ran an unexplainable fever and, because that hadn't happened since the birth of her youngest son 15 years ago, she made an appointment with a general practitioner who did a series of lab work and blood tests. The results surprisingly showed that Westbrook had a type of cancer called Philadelphia chromosome-positive chronic myeloid leukemia, or CML.

Soon after her CML diagnosis, Westbrook was referred by her general practitioner to a prestigious cancer center where she worked closely with a team of CML specialists to determine the right treatment plan for her.

CML is a blood cancer in which the body produces cancerous white blood cells. In 1996, when Westbrook was diagnosed, there were limited treatment options and the average life expectancy was three to seven years.

"Finding the right treatment for me took time, but after trying several treatment options, I realized that I had only achieved temporary positive results but none with long-term gains," Westbrook says. "I decided that I needed to take a stronger stance in my treatment plan, and advocated that my physician enroll me in a clinical trial for another medication."

Since Westbrook was diagnosed, there have been significant advances in understanding how CML works, which have led to the development of treatment options designed to act against the underlying cause of this disease, a genetic abnormality called Bcr-Abl and also known as the Philadelphia chromosome. These newer treatments, known as Bcr-Abl inhibitors, block the ability of the abnormal Bcr-Abl gene to send signals that drive production of the leukemic blood cells. In conjunction with an ongoing disease management plan, these treatments have improved patient lives.

For patients living with CML, it is important to work with a CML health care team to discuss a treatment plan and to establish clear blood level treatment goals - which are specific to each person - to make sure he or she is achieving the best results. If a patient doesn't meet one of his or her treatment goals, they should discuss their options with their CML health care team - like Westbrook did - and stay positive. There are things that patients and their doctors can do, such as making sure the appropriate medication is being given, which can help one get back on track.

"For me, if I hadn't been proactive and knowledgeable about what questions to ask my doctor and what to expect from in terms of acceptable treatment response and treatment options to consider, I may not have received the treatment that has worked best for me," Westbrook says. "In the 16 years since my diagnosis, I feel so blessed that my cancer is at the lowest level possible. I encourage those living with cancer to speak with their doctors about managing their disease."

To learn more about CML and to connect with other CML patients and patient groups, visit www.cmlearth.com, an interactive global social network sponsored by Novartis Oncology and dedicated to connecting the CML community from around the world. If you or a loved one has CML, look for upcoming announcements on CML Earth about an upcoming Virtual Workshop to be in September.