LUNG FORCE Hero and American Lung Association Lung Cancer Patient Advisory Group member Karen Loss was diagnosed with stage 4 non-small cell lung cancer in November 2012. Since her diagnosis, she has been on several lung cancer treatments, and has participated in clinical trials. Carly Ornstein, National Director of Lung Cancer Education, talks with Karen on her advice to lung cancer patients curious about clinical trials.
Carly: Can you tell me a little bit about your experience with clinical trials?
Karen: I didn't qualify for the application process for an earlier clinical trial due to lack of enough tissue sample from my original biopsy. That was a disappointment because I had become aware that, in the world of metastatic lung cancer, clinical trials are often great treatment options. My tumors have been slow growing thankfully, but it seemed that after each new treatment I was on (chemotherapy, radiation, immunotherapy), eventually they would begin to show steady growth on the CT scan. Because of this, my doctor and I discussed new treatment alternatives, and it brought us to the clinical trial I am currently in.
One thing that excited me about taking part was that I would be the first person worldwide in this trial—a pioneer, if you will. Now, having been in the trial for nearly six months, I've found that the side effects of the trial drug have hit me fairly hard, but also so have the benefits. My tumors have shrunk significantly. I don't like the gastrointestinal (GI) side effects I've been experiencing, but I've decided to take it one scan at a time (I get scanned every eight weeks). I stay positive by reminding myself of the benefits I am providing to the research team — that I may be helping others down the road — while I am doing everything I can to eventually reach that elusive no evidence of disease (NED) status for myself.
C: What would you tell a lung cancer patient who is considering entering a clinical trial?
K: Read through the paperwork carefully and ask as many questions as you have prior to signing on the dotted line. Don't stop asking questions until you are satisfied that you understand the answers. Go into a trial with your eyes wide open, knowing that benefits are not guaranteed or promised but that they are a real possibility. Know that you can discontinue your trial participation at any time if you feel the need, and this will not be held against you in any way. You are the driver of your health and lung cancer experience, so it is important that you hold onto the wheel and keep your eyes and ears wide open.
C: Once someone is in a trial, what are some points they should consider?
K: From a practical standpoint, don't plan on big trips or events in the first few weeks. Just allow yourself to focus on the trial if possible. Always be an active advocate on your own behalf. Stay in close touch with your trial team, notifying them of any and all side effects you experience along the way with the new trial drug or treatment methodology. Be open to new ideas and potential treatments to deal with side effects like palliative therapy and drug treatments that may help to alleviate any suffering you may experience.
C: What are some ways patients can cope with the possible stress of being in a clinical trial?
K: Express yourself to your trial team regarding your emotions along the way. If you feel thrilled to be a part of important research, let them know. If you are frustrated at the side effects, definitely let them know. If you get depressed because you are not seeing benefits you had hoped for, let them know. Nothing should be off limits and your trial team needs this information. Also, share your experiences with those close to you. It's too stressful to keep everything you feel physically and emotionally to yourself.
C: What would you tell a lung cancer patient who has never participated in a research study before?
K: Be happy to be among the small percentage of lung cancer patients who are actively helping build a future where treatments for this disease improve and potentially even cure people who could not expect such outcomes previously. Recognize that you are doing this not only to hopefully benefit yourself and your circumstances, but also to benefit other patients in the months and years to come. And continue to ask lots of questions all along your journey. Never stop learning. Only you know your own personal experience, so remember that you are an equal partner in this trial.