What to expect during a clinical trial

Once you've received a cancer diagnosis, you're faced with a series of sometimes urgent choices, including which type of cancer treatment you undergo. We make a personal and nuanced choice when we select treatment, and I believe that the best choices come from the best information about the best options.

After my melanoma diagnosis, I underwent surgeries to remove a wide area around the original site and 39 lymph nodes (sentinel node followed by those in the region). I was diagnosed with stage III melanoma and needed to quickly determine what treatment to keep the cancer at bay. After much research, deliberation and discussion with family and doctors, I chose a clinical trial.  

Selecting the right clinical trial
After consulting my doctors at MD Anderson -- Patrick Hwu, M.D., and Merrick Ross, M.D., I decided that a clinical trial would help further future treatment for myself and others, and would also be a sober, smart choice based on the relative risks and successes of the available treatments.

At the time, there weren't any open trials at MD Anderson for which I qualified. So Dr. Hwu, helped me find an open trial at another hospital in Virginia. I remained under Dr. Hwu's primary care and he worked with the doctors involved in the clinical trial.

Getting enrolled in the trial I had selected was no easy matter. I read and signed sheaves of documents, wrangled medical documents from three institutions, and exchanged countless emails and phone calls to ensure everything would come together on time. I barely got in. Had I not had essential medical support from my care team at MD Anderson, and had I not had emotional support from friends and family, my participation in the trial never would have happened.

Undergoing a melanoma clinical trial
The treatment portion of the trial involved a number of painful injections (usually weekly) that would strengthen my immune system and train it to target melanoma. Though side-effects vary, mine consisted of about 24 hours of flu-like symptoms. These symptoms dissipated more quickly if I exercised moderately (and for a sustained duration) during that period.

The trial also included many blood draws, regular symptom interviews, a biopsy to remove the skin surrounding the initial injection site (just like getting a mole removed), as well as a lucid lymph node biopsy removing the sentinel lymph node for the initial injection site. This last one was a doozy. Being awake while you are cut that deeply and then asked, "Want to see it?" in reference to your freshly removed lymph node was both a disturbing and irresistible offer.

The clinical trial treatment period lasted about three months. Then, after another three months, I returned for a final interview and blood draw. Now, with those trips completed, I will have an annual follow-up phone call and I ensure that my scan results get sent to doctors running the trial.

Life after a clinical trial
Currently, I have no evidence of disease (NED). If I never have a recurrence, I will never know whether the clinical trial deserves the credit (and if it does recur, there will be no certainty about whether it delayed recurrence). For now, it is enough that I am NED, and that I have tried my best by aggressively pursuing a treatment that I believe gives me the best chance in what historically has been a bleak landscape.

I am extremely grateful for the chance I had to participate in this clinical trial. While the side effects were at times painful and the frequent travel burdensome, these inconveniences hardly compare to the side effects of the standard treatment options for my melanoma stage and condition. And while I did not choose the clinical trial exclusively because it may help others, I did get to contribute to the progress of medical science while making a rational choice about my own treatment.