Susan Falbo: Spending Quality Time with My Family Despite Mesothelioma, Thanks to Combination Immunotherapy

Age: 63Shadyside, Ohio

I was diagnosed with mesothelioma when I was 59. At the time, I was told that my only options were chemo- and radiation therapy and that I would be very lucky if I lived 12 to 18 months. I was not satisfied with that answer and my family and I did extensive research on the clinical trials that were evaluating new treatment options for patients with mesothelioma. Eventually, I was able to receive a combination of two immune-checkpoint inhibitors, ipilimumab (Yervoy) and nivolumab (Opdivo). Since I have been on this treatment, my tumors have shrunk dramatically. I now have a great quality of life. I am able to play with my grandchildren and enjoy time with family.

My journey with cancer started about four years ago. My husband, two of our children, and I, all had what we thought were summer colds. After everyone else got over their colds, my illness persisted. I went to see a physician who initially treated me for pneumonia. However, I became hospitalized several times over that summer and wasn’t getting any better. Finally, the doctors sent me for a lung biopsy, which led to my diagnosis of mesothelioma. After the diagnosis, the doctors recommended that I go home and get my affairs in order. I was told that radiotherapy and chemotherapy were my only treatment options and that, even with those, I would be lucky if I survived past 18 months. I was only 59 at the time and up until this diagnosis, I was very healthy. I had gone 20 years and never missed a day of work. So, to say this came as a complete shock would be a gross understatement.

Being the persistent and diligent person that I am, I started exploring the best course of action. My family and I researched everything that we could on mesothelioma. I was able to connect with a thoracic surgeon at the Mount Sinai Hospital in New York City, who had a lot of experience with patients with mesothelioma. My first treatment was a surgery known as lung decortication, followed by 30 rounds of radiation and chemotherapy. Although I did not do well with the chemotherapy, things seemed to be stable for about a year, but after that the tumors started to grow again. By this time, we had done more research on the newer therapies that were being evaluated for mesothelioma and I wanted to explore options other than chemotherapy. I heard about a clinical trial that was testing a combination of two immune-checkpoint inhibitors, ipilimumab and nivolumab. To learn more, I traveled to the University of Chicago and met with the physician who was heading up the study. Even though I was a prime candidate for the trial—had all the cancer markers that were used to recruit participants—she informed me that it was too late to enroll. However, she conferred with my oncologist and, through some collaborations, I was still able to receive the treatment here in Ohio.

I started receiving the ipilimumab and nivolumab combination therapy in October of 2018. At that time, I had four very large tumors. The largest one was on my lung, lying on top of my liver and causing a lot of concern that it was going to infiltrate the liver. Within only three months of treatment, all the tumors started to shrink. In fact, three of them are almost nonexistent. And the fourth and largest tumor, that is on my liver, shrank to about a quarter of its original size. I had zero side effects for the first 15 months and had a very normal quality of life, which was wonderful. In January of 2021, however, I did experience some side effects. The treatment caused my immune system to attack my joints and I developed an arthritic condition that I am being treated for right now.

I truly credit the drug combination for getting me through my cancer and I sincerely hope that, with new advances in research and technology, researchers will find a cure for mesothelioma in my lifetime. I was very fortunate to have received these drugs. My experience has taught me that it is critical for patients to advocate for their own health, educate themselves the best way possible, and not settle for traditional therapies that may have been the standard of care for decades but do not have good outcomes or permit a normal quality of life. I am also a huge advocate for cancer research and clinical trials. Continued federal funding for cancer research is not just necessary but is the only way by which we will find cures for many of the cancers that currently have no effective treatments.