Dr. Wendy Harpham is a doctor of internal medicine, cancer survivor, and award-winning and best-selling author of books about cancer: Healthy Survivorship, recovery and late effects, and raising children when a parent has cancer. She is also a public speaker, patient advocate, and mother of three.
I'd received aggressive chemo (1990-1991), XRT (1992) and was taking interferon (1993) when my lymphoma recurred again. I entered a Phase I trial of a novel therapy: monoclonal antibodies. Why did I do it?
My last post introduced a dilemma regarding modern clinical trials: Is it ethical to randomize some patients to the "control arm" of a trial where they will NOT receive the trial drug?
According a NYTimes article, one particular trial of a therapy (called PLX4032) for malignant melanoma "ignited an anguished debate among oncologists about whether a controlled trial that measures a drug's impact on extending life is still the best method for evaluating hundreds of genetically targeted cancer drugs being developed."
Sunday's NYTimes ran an article tackling a complex ethical dilemma in cancer care: The witholding of treatment in clinical trials. Because I was treated in 3 clinical trials in the 1990s, the topic is close to my heart.
When a parent has late-stage cancer with limited life expectancy, everyone wants to rewrite the expected ending. The doctors and nurses, the parent with cancer, the family's loved ones and especially the children want to make it "all better."
When my three children were young, every night I put them to bed one at a time. We'd talk for a few minutes before beginning our ritual interactive songs, tucking-in, kisses, "Nighty night" and lights out.
One evening as I began the routine with my youngest, he said something that practically stopped my heart: "Mom, do you remember when...."
People who hear my story often say, "You had an advantage getting into those clinical trials, because you were a doctor with connections." Given the paucity of patient-centered resources in 1993, this was true.
Today a plethora of excellent resources can help patients and families learn about clinical trials and find any available trials that might be right for you. Resources include:
As a scientist, I credit clinical trials with advancing our understanding of cancer and ability to treat it effectively. As a patient, I credit clinical trials with playing an essential role in my survival.
From both perspectives it troubles me greatly that only ~3% of adult cancer patients participate in clinical trials.
Your life is in a good place at the moment. You have great news, too.
You bump into a casual friend who is recently divorced, going through cancer treatment, grieving the loss of a loved one, looking for a job or going through some other life stress. Your friend says, "Hi, how are you?"
Do you share news of your good fortune? Or just say, "Fine, thanks."
"For the past 20 years, I’ve been thinking, talking, and writing about survivorship. What a thrill to gain new insight into this word I use every day." (from "View From the Other Side of the Stethoscope" in Oncology Times, 08/10/10)