Hearing the words “You have cancer” is a devastating blow, especially when the biggest health issues you’ve had to contend with over more than 6 decades are common colds and knee and hip replacements. But in 2017, the symptoms I thought were from a lingering summer cold drove me to seek medical attention. After multiple stays in the hospital for treatment of pneumonia and then thoracentesis to remove fluid from my lungs, a biopsy of lung tissue showed I had “some type” of cancer. Additional pathologic analysis of the tissue determined I had stage IV mesothelioma, and I was told to go home and get my affairs in order.
Stunned, my husband and I traveled to a large cancer center in our state, where an oncologist recommended four rounds of chemotherapy to make me comfortable until I died. I’m a persistent and diligent person; after learning the center had treated only 20 to 30 patients with my type of cancer a year, I listened to a recurring voice in my head telling me to find another oncology team.
“The durable effect of the immunotherapy has kept the cancer under control. I’m hopeful there will be another treatment option for me once the cancer progresses.”— Susan Falbo
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An Internet search brought me to a thoracic surgeon in New York City. He said he treated between 400 and 500 patients with mesothelioma each year. His next words gave me the first glimmer of hope I had had since my diagnosis.
“I’m not God,” the surgeon said. “I can’t tell you how long you are going to live.” Then he put his hands on my shoulders and looked into my eyes and asked me if I felt like I was dying. When I told him “No,” he said, “Then, you are not dying. We are going to do everything we can for you.”
Hearing those words and meeting one of his patients who had survived the same type and stage of disease I have for more than 5 years gave me the additional courage I needed to begin treatment. My husband and I spent the next 70 days in a Manhattan hotel while I underwent lung decortication, followed by 30 rounds of radiation therapy and chemotherapy. Although I did not do well on the chemotherapy regimen, it was successful in shrinking the tumors in my right lung and kept them stable for about a year.
Searching for the Next Treatment Option
After the cancer started progressing, I asked my oncologist about my next treatment options. He recommended a clinical trial that was investigating a combination of the immunotherapy drugs ipilimumab and nivolumab in patients with mesothelioma. Despite being qualified to participate in the study, including having all the right cancer markers, I had gotten to the trial too late to enroll. Fortunately, through collaborations between the lead investigator of the study and my oncologist, I was able to receive the investigative therapy off trial.
A High-Quality Life With Cancer
By the time I began receiving the immunotherapy in the fall of 2018, I had four very large tumors in my right lung, the largest of which was threatening to infiltrate my liver. About 3 months later, three of the tumors had nearly disappeared, and the large one near my liver had shrunk by about 80%. Realistically, I couldn’t have wished for a better outcome.
For the next 15 months, I continued to do well on the treatment and had zero side effects, allowing me to have a very high quality of life. By early 2021, however, I began experiencing checkpoint inhibitor–induced arthritis, a condition that occurs in about 5% of people receiving immunotherapy,1 and had to stop the treatment.
Still, the durable effect of the immunotherapy has kept the cancer under control. I’m hopeful there will be another treatment option for me once the cancer progresses.
Living My Best Life
I know how lucky I am and don’t take my good fortune for granted. I know that if I didn’t have the financial means to travel across the country and live in a hotel for more than 2 months and didn’t have access to the top oncologists in their field, I probably wouldn’t be alive. It pains me to think about all the people who are not so fortunate.
Immunotherapy added more years to my life than I likely would have had without it. The treatment also gave me hope that research is moving so fast and in the right direction, I may be able to live with this type of lung cancer as a chronic disease for many more years.
However, I’m not naive. I know that I could die tomorrow. When you are given a cancer diagnosis, your first thought is “I’m going to die.” And on some days, I still must push away that fear and instead stay focused on the continuing advances in mesothelioma that will, hopefully, get me to the next effective therapy and then the next.
In the meantime, I’m living my best possible life. Since my cancer diagnosis, life has become more precious, and I enjoy every day. I’m also no longer afraid of dying. Cancer has given me the opportunity to say everything I have wanted to say to my husband, children, and grandchildren, and I’m at peace.
Ms. Falbo lives in Shadyside, Ohio.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.
1. Henderson E: Immunotherapy drugs trigger inflammatory arthritis in subset of cancer patients. News Medical Life Sciences, November 10, 2020. Available at www.news-medical.net/news/20201110/Immunotherapy-drugs-trigger-inflammatory-arthritis-in-subset-of-cancer-patients.aspx. Accessed June 6, 2022.