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  • John Brooks

    The risks and rewards of clinical trials

    John Brooks and his wife, Michele Myrus-BrooksJohn Brooks and his wife, Michele Myrus-Brooks 

    If you are reading this essay, you may know, all too well, that to be told you have cancer shatters your being and changes your life - and those lives close to you - forever. In 1988, I was diagnosed in Tucson, Arizona, with liposarcoma. I had a tumor removed from my left knee and received radiation treatments, but my doctors told me the cancer would come back.

    I remained disease-free for 10 years. While vacationing in Boston, I discovered that the cancer had returned with a vengeance, in the form of seven tumors, including one in my liver and one in my lung. Returning home, I was told that my life expectancy could be measured in months. At that point, my wife and I decided to fight, and moved to Boston to begin a battle that has lasted more than 17 years.

    After standard chemotherapy and several surgeries, my Dana-Farber oncology team formulated a treatment plan. One option was an experimental, Phase I clinical trial to test the safety of a new drug called Endostatin, which might shrink my tumors by shutting off their blood supply.

    I had been told that some Phase I patients do not survive long enough to benefit from treatment results. (Phase I trials test the safety of a new drug or treatment.) Yet I believed that the risk was worth the possibility of extending my life, and that taking this risk could, at the very least, help other cancer patients. Unless some of us with cancer make that crucial decision to enter an experimental drug study, there might be no new drugs available for future use. I believe this to be true, whether or not one is coping with a widely pervasive form of cancer or a relatively rare cancer, such as liposarcoma.

    A family member of a dear friend offered the following wisdom when I spoke of my decision to enter a clinical trial at Dana-Farber: "I hope that your particular course of treatment helps you live and helps other people live." This is an appropriate observation. In making a decision to test a new therapy, I profoundly hoped that it would benefit me, but kept in mind the broader goal of medical research.

    It is my belief that we have a well of strength deep inside that we can draw from during difficult times in our lives. My wife, Michele, and I were fortunate enough to be able to access these reserves of strength. With help from others, we learned to express "the voice of the patient" (and family member). We asked questions, explored treatment options, and did not accept any opinion without full knowledge or without considering a second and third opinion.

    In December 2000, my experimental treatment began in Dana-Farber's first floor infusion unit, where I would be a patient every other day for the next year, and then twice a week for an additional 18 more months. My infusion nurse, Cindi Vokey, and all of the other staff who cared for me helped me endure the separation from my wife and my home, and encouraged me to continue fighting. The support I've received from the professional and caring people at Dana-Farber has been an important part of my survival. The clinical trial for Endostatin ended, and I tried other experimental therapies as well.

    Because my disease appears to be rapidly progressing now, my DFCI oncology team asked if I would be willing to test another drug, or a combination of drugs, even if it meant my treatment would take place at a medical center outside of Boston, away from the community that had become my home away from home. As you might surmise, my family and I said yes. I am now enrolled in another protocol, and we have every reason to believe it will work and give me more quality time.

    I know, without a doubt, that had it not been for these experimental drugs, as well as my faith, the loving support of my wife, family and friends, and our commitment to speak up, I would not be alive today. Moreover, I am convinced that a "can-do" attitude can play an important role in the survival of a cancer patient.

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