Leukemia diagnosis springs patient into action

In 2012 all was grand, or so I thought. I had it all: a fabulous career and a wonderful life in South Florida and a loving marriage. Having led global communications for two of the biggest employers with headquarters in the area, I was well known in the business and philanthropic communities of Dade, Broward, and Palm Beach Counties.

Grateful for my father surviving malignant melanoma, in my twenties I became involved in helping cancer organizations nationally and in my home state of Massachusetts. He eventually died decades later from mesothelioma.

Unfortunately, cancer would hit even closer to home, when my primary care doctor discovered my white blood cell count was elevated. Begrudgingly, I took time out of work to visit a hematologist at a Miami teaching hospital, who delivered the shocking news: “You have the C-word; more specifically you have chronic lymphocytic leukemia, also known as CLL.” That one short pronouncement forever changed my life.

It is frightening to hear you have cancer. Those first few hours, days, and weeks post diagnosis are the most terrifying and traumatic of your life. Being a person of action, I needed to learn more; I needed to do something pro-active—and STAT.

When I asked for more information about CLL, the Miami doctor said he had no related materials and to come back in four months. I felt I was given a life sentence and dismissed. Without any information, other than a diagnosis, I still didn’t know my prognosis or whether I could even be saved.  Somehow, I knew there was better treatment and care out there, from doctors who do not trivialize a cancer diagnosis.

I called my husband, who was in Boston at the time. Together we decided I needed to get to Dana-Farber Cancer Institute as soon as possible. We learned they have their own center for my disease and one of the top CLL clinicians in the world, Jennifer Brown, MD, PhD. By the end of that fateful day, I was scheduled to see her within a few weeks.

Growing up in the Boston area, and in a medical family, I knew Dana-Farber was the place to be if you wanted the latest in treatment, so I packed up and left South Florida—and my career—and moved back home to be Dr. Brown’s patient. She informed me I had a more progressive form of the disease due to certain genetic markers, but my blood counts and other factors determined it was still early in my disease progression. That first day I learned the true meaning of “watch and wait,” and remained in it for over three years. During this time, Dr. Brown, my husband, and I met every three months to watch my disease and wait until it was ready to be treated. We got to know Dr. Brown and her team, learning they truly are amazing! We had absolute confidence and trust in her decisions on when and what my treatment plan should be. We had also discussed being open to a clinical trial, so I could receive tomorrow’s treatment today, even with the potential risks.

Eventually, my disease progressed to infiltrating most of my bone marrow and caused my spleen and lymph nodes to be greatly enlarged, in addition to a rising white blood cell count. So in the fall of 2015, I entered a phase 2 clinical trial under the care of Dr. Brown. The trial was under the direction of Dana-Farber’s Matthew Davids, MD, MMSc, another world-leading clinician and researcher. I have had good results on the trial combining two different CLL treatment protocols. (Normally patients will receive one or the other separately.) I will remain on a daily oral targeted therapy drug, Ibruntinib. My results have been good on this trial combining two different CLL treatment protocols. (Normally patients will receive one or the other separately, so you can imagine what it’s like being on both.) I will remain on the daily oral targeted therapy drug, Ibrutinib indefinitely.  I continue seeing Dr. Brown and her team quarterly and am happy to report that I am in remission thanks to them and the Institute.

Dana-Farber has saved my life, and I am grateful. Today, I am more involved in oncology patient advocacy than ever. I am a Patient Representative for the Food and Drug Administration (FDA); host a monthly cancer patient video report on Patient Power, including live reports from my past chemotherapy infusions at Dana-Farber; and am the spokesperson and part of the committee for Dana-Farber’s UnMask Cancer fundraising event, presented by The Herb Chamber Companies, on October 20.

This is a way to thank and give back to my outstanding care team at Dana-Farber, to the researchers who originated my clinical trial, and to the rest of Institute to whom I will be forever grateful. The more money we raise, the more research can be conducted to help patients today and in the future. I am one of the multitude of patients alive today thanks to leading research happening right here.

Michele Nadeem-Baker
Guest Blogger

To join Michele as a sponsor or guest at Dana-Farber UnMask Cancer on October 20, visit unmaskcancer.org.