Monica Barlow: Lung Cancer

Age: 35Ellicott City, Maryland

I was diagnosed with stage IV lung cancer in September 2009. I was blown away by the diagnosis: I was just 32, I had never been a smoker, I had no family history of cancer, and I had always maintained a healthy lifestyle. I feel very fortunate, however, that my doctors were able to find a specific mutation in my cancer that meant I would likely benefit from the drug crizotinib (Xalkori). I’ve been taking crizotinib since Thanksgiving 2010, and my cancer is under control. I feel great and have a good quality of life.

I first experienced symptoms during the summer of 2009. I had a cough that I could not shake, despite several courses of antibiotics. I was short of breath when running, which I was doing a lot of because I was training for a half marathon. Eventually, my husband persuaded me to get it checked out. I went to a walk-in clinic at the University of Maryland Medical Center. The doctor I saw there told me I should get a CT scan. I had that done soon after. It showed a nodule in the left lobe of my lung.

A bronchoscopy followed, which showed the nodule was cancer, and then a PET scan, which showed the cancer had spread to some of my lymph nodes and my liver. Surgery was not an option, so my doctors started me on the drug erlotinib (Tarceva), which works against a protein called EGFR. They did this because many lung cancers in patients who are young, otherwise healthy and have never smoked have EGFR mutations. It turned out that I did not have EGFR mutations, and erlotinib did not work for me.

At about this time, I got a second opinion and transferred my care to Johns Hopkins. I received great care at the University of Maryland, but I knew that with my condition I would probably need access to clinical trials and more of them were available at Johns Hopkins.

Since the erlotinib was not working, I was switched to a chemotherapy regimen. I received six cycles of carboplatin, pemetrexed (Alimta) and bevacizumab (Avastin). My cancer responded well; the nodule in my lung shrank and those in my liver were kept under control, so I came off this treatment and just took Avastin.

In the meantime, my doctors discovered that my cancer had the ALK mutation, and they were debating whether or not I should enroll in a clinical trial testing crizotinib, which targets ALK. Since I was still responding well to the Avastin, I stayed on that until October 2010, when the tumors in my liver started growing. It was at this point that I switched to the crizotinb clinical trial, and I’ve been taking the drug ever since.

Although crizotinib has worked really well on the tumor in my lung and on my affected lymph nodes, the tumors in my liver have been problematic. I had several procedures on my liver to try and get rid of the tumors before having surgery, in May 2012, to remove the 40% of my liver that has been affected over the course of my disease. My only scan so far since the surgery has shown that my liver is cancer free, and right now my life is almost the same as it was before my diagnosis.

I know that I probably would not be alive right now without crizotinib, and I am a huge advocate of research. I just hope that it advances faster than my cancer.

The AACR was saddened to learn that Monica Barlow passed away on February 28, 2014. We are deeply grateful to Monica, a never-smoker who lived a healthy lifestyle, for sharing her experience with metastatic lung cancer, and allowing us to chronicle it in the AACR Cancer Progress Report 2012 to help educate others and advocate for continued funding of cancer research.

View all Cancer Progress Report 2012 Survivors