My husband and I will never forget the day we were told that our 15-year-old son, Steven, had stage IV osteosarcoma (bone cancer). It was every parent’s nightmare—and the start of an emotional rollercoaster ride.

Our response to the diagnosis was typical. We were numb and filled with fear. Ten months later, after rigorous chemotherapy, radiation, and surgery, Steven was proclaimed cancer-free or having “no evidence of disease.” That news left us feeling blessed and relieved.

Unfortunately, within a year and a half, Steven was diagnosed with another cancer—secondary acute myelogenous leukemia—as a result of the chemotherapy regimen. We felt betrayed and despondent.

We really thought we were going to lose our son.

But our story doesn’t end there. A bone marrow transplant gave Steven a second chance at life. The donor was a stranger. And 10 years later, Steven remains cancer-free. Amazing, don’t you think?

Our story underscores that surviving bone cancer can be a blessing and a curse. And our experience is an excellent example of why the work of Clinical Research Pathways is so important. The public charity seeks to extend the benefits of research to all people, regardless of age, gender, race, ethnicity, and economic circumstances. Clinical Research Pathways also is a resource for desperately ill patients who want to try experimental medicines through FDA’s expanded access program.

The rewards and risks of treatment

The blessing of survivorship is that the person gets another chance at life. The curse is that the treatment can cause secondary cancers, post-traumatic stress disorder (PTSD), chronic pain and, for those who undergo a bone marrow transplant, graft-versus-host disease (GVHD). Steven has experienced all of these.

What’s most important, of course, is that Steven is still with us. That would not have been possible without drugs and other treatments developed through clinical research. Although a bone marrow transplant offers no guarantee of success, in Steven’s case, the treatment saved his life.

However, the fact remains that Steven’s osteosarcoma treatments caused a secondary cancer, and the bone marrow transplant caused chronic GVHD. Steven’s PTSD and chronic pain can likely be attributed to his cancer treatments and the emotional and physical trauma of enduring two very excruciating life experiences during adolescence.

There are risks associated with all medical treatments, especially those designed to halt horrendous diseases like cancer. The hope is that future cancer treatments will be less caustic and have fewer, less severe side effects. Good, effective research is the key to realizing these hopes and, ultimately, finding a cure.

Clinical Research Pathways plays a key role in promoting high-quality, ethical research. The organization’s signature program, “Training Minority Clinical Teams: Getting New Quality Medicines to All Americans,” recognizes that to deliver effective results, research must involve all segments of the population.

The program encourages individuals of populations that are underrepresented in clinical trials to become scientists and medical researchers. It also helps individuals from underrepresented populations understand that their participation in clinical research can help save loved ones from going through the same trials and tribulations that my son Steven experienced. For clinical research to be successful—for results to be reliable—all segments of the population, including all age groups, must be represented.

Some desperately ill patients are not eligible for clinical trials. Clinical Research Pathways educates these patients about a different option: the chance to try experimental medicines through the FDA expanded access program previously referred to as “compassionate use.”

That term resonates with me. As a parent who was told—twice—that her child had less than a 25 percent chance of surviving, I know firsthand that compassion is the bottom line. Compassion is the reason to allow a patient to try a drug that was originally created for another purpose but might offer hope for a longer life and healthier future. In Steven’s case, compassion prompted a stranger to be a bone marrow donor. That made all the difference in the world for our family.

Angelike A. Giallourakis, Ph.D., is a member of the Board of Directors of Clinical Research Pathways and president of the Steven G. AYA Cancer Research Fund. An advocacy organization, the fund supports patients and research, and promotes issues surrounding adolescent and young-adult cancers. 

 

 

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