When Joining a Cancer Clinical Trial Is Your Last Treatment Option

June 11, 2020
Cathy Jordan

Cathy Jordan is navigating her journey with triple-negative breast cancer with the help of her husband, Steve Attanasio, and her health care team. She is a PhD research engineer and has 2 college-age daughters, Jennifer and Elizabeth. She is grateful for her family and health care team, as well as the science that has gone into immunotherapy drug development. 

It's strange what you remember about your cancer diagnosis. I recall collecting my medical test paperwork for an upcoming doctor's visit, and my pathology paperwork fell to the floor. What stood out on this single sheet of paper on my bedroom floor were the words “triple negative.” My gut told me that wasn’t a good omen.

As I looked closer, I noticed other information—much of it in a language I did not understand—which also indicated bad news: aggressive, rapidly growing cancer cells. Triple-negative breast cancer (TNBC), which is the type of cancer I have, tends to affect younger women, particularly younger African-American and Hispanic women. I was 46 years old at the time of my diagnosis.

It's very hard to hear, absorb, and process such serious news about your life and make quick decisions about your care. I am so fortunate to be married to someone who is at heart a natural-born researcher who loves to learn all the data and information before making a decision. He was able to listen objectively for me and act as my advocate.

At some of my appointments, it was truly difficult for me to hear the bad news and listen to my treatment options. When I was diagnosed in 2013, our daughters were 12 and 14. I so desperately wanted to take care of them and, as their mom, find a way to keep them informed but not scare them too much with the challenges of my treatment.

To treat my cancer, I received chemotherapy followed by surgery and radiation therapy. At my post-surgery check-up, however, my doctor had bad news. While the tumor removal was successful, there had also been a need to remove 25 lymph nodes in my armpit and chest region, and more than half (13) had tested positive for cancer. The test results meant that the cancer had aggressively entered my lymphatic system. This meant there was a high chance that it would recur, most likely fairly soon due to the nature of my cancer.

The cancer returned a week before Christmas, about 7 months after I finished radiation treatments. I felt a growth in my neck, and a biopsy showed it was cancer in a lymph node. A scan showed that I had 2 or 3 other involved lymph nodes, as well. Sharing all of that news with my daughters and family was one of the most difficult messages to deliver. I believed that I probably had no real treatment options left.

But my health care team was not ready to quit just yet. We found out that there was a clinical trial for an immunotherapy drug that might be a fit for me. I weighed the decision to consider a clinical trial by looking at my alternatives, which were scarce. There were no known or proven treatments left to fight my cancer. It was a choice between trying to participate in a clinical trial or wait and see if the cancer progressed to other parts of my body.

I reviewed the clinical trial consent paperwork and realized the known and unknown side effects, coupled with the uncertainty of success, were risks I could face instead of waiting and watching. Deep down, I knew I had to try it.

I had to meet certain criteria to be qualified to enter the trial, including having a cancerous growth 1.5 centimeters or larger, and the cancerous tissue removed during surgery had to test positive for a specific protein called PD-L1. The testing involved my tissue samples being sent to a lab and an x-ray scan to see the size of my lymph node. The PD-L1 testing took 2 weeks to complete.  There was a lot of anxiety for me and my family during this time of high uncertainty.

I found out I met both criteria, and I was allowed to start the clinical trial in January 2015. At that time, my emotions changed from anxiety to determination. I was going to give myself and this experimental drug every chance to succeed. After my first few doses, my liver started to react. My nurse said that some patients had to leave the study due to serious side effects. I knew that I could not control the outcome, so I had to ride this out. Fortunately, my liver rebounded, and I was able to stay on the clinical trial. After my fourth dose, x-ray scans showed the largest cancerous lymph node had shrunk in half, and most importantly, there was no indication of the spread of disease elsewhere in my body. 

I soon came to appreciate that I was a beneficiary of those who had come before me and who had participated in earlier clinical trials. Through their participation, doctors were able to identify the best immunotherapy drugs and the safest dosing to focus on the best treatment options for people like me. I also came to realize I, too, would help the community of people with metastatic cancer looking for effective treatments for their cancer. 

I participated in the phase II/III clinical trial for 3 years and then received the drug for another year after that. I did have additional side effects. My thyroid gland stopped working and I had to go on synthetic thyroid medication, which I still take every day.

What I would want those considering participating in a clinical trial to know is that it is a commitment of time and energy. Regular testing on your body and your cancer is needed to build understanding of treatment effectiveness and side effects to improve the treatment options for future patients. The good news is that the team of doctors and nurses providing your care are highly committed, too.

Probably one of the more tedious parts of the experience for me was sitting in the treatment room to receive the IV drugs and to gather my temperature, blood pressure, blood chemistry, and all the other data needed for the clinical trial. The treatment rooms were varied places in which the group I sat with changed each time I went. Some days were quiet and uneventful, and other days I witnessed more personal struggles around me, as sadly not everyone did as well on the drug. 

I underestimated the emotional toll that I would experience from the clinical trial, of the uncertainty, the side effects, and sitting with others during treatment who were not doing well medically. Still, I realized that I had been blessed with an overall positive outcome and was very grateful for the existence of the drug and the clinical trial.

If you’re considering joining a clinical trial, my advice would be to learn as much as you can about it and ask questions. Some questions you might consider asking your health care team about the trial are:

  • What is the time commitment? How often are the appointments and treatments, and how much time should I allow?

  • How long might I be on the clinical trial?

  • How often will there be scans or tests to check the effectiveness?

  • Are there any medications, foods, etc., that I should avoid while on the clinical trial?

  • What resources are available to help with the uncertainty and emotional challenges, such as a counseling service?

After the drug stopped working in the first clinical trial, I switched to other treatments, including a second clinical trial. The treatments have helped me, and I am continuing my long, challenging, but so far successful cancer treatment. I will have my seventh “anniversary” in September 2020, and I have been able to attend so many special events, including 2 high school graduations for our daughters. I am grateful for my team, my extended family and friends, and for the science that has gone into treatment research and clinical trials. I hope that my struggle not only aids my life but can help others, too.

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