Lung Cancer Survivor

There is Always Hope

After being misdiagnosed twice, Ed Levitt found out he had Stage IV lung cancer in 2004. However, he didn’t accept it as a death sentence. With his wife, Linda, by his side, he sought a second opinion, which led to working with forward-thinking medical teams. Over the years, Ed and Linda have volunteered their time – and tumor samples – to help further research they hope will someday cure lung cancer.

 

Extreme pain in my sides and back sent me to the emergency room twice in two years. Each time, I had a CT and was told it was kidney stones. I never passed the stones, but coincidentally, the pain went away. I exercised for an hour or two every morning, was extremely fit and otherwise felt great, so I had no reason to question either diagnosis. The third time it occurred, my face started to sag. It looked like I’d had a stroke. My internist ordered an X-ray and a biopsy. After reviewing my biopsy results, a hospital oncologist came into the exam room and told me I had Stage IV lung cancer. He estimated I had three to four weeks to live, attributed my sagging face to palsy, and told me there weren’t any clinical trials for me. He then excused himself to attend a function at his son’s school that he just couldn’t miss. I could, however, call his office with questions.

My wife and I were dumbfounded. A neighbor connected us with an oncologist at a nearby teaching hospital where she was being treated for cancer. The doctor there ran his own tests. I had a tumor in my right lung and metastases everywhere. My sagging face was caused by mets pressing on my jaw and collarbone, lymph nodes and both adrenal glands. I asked the doctor if there was any hope. He looked me in the eye and said, “Mr. Levitt, there is always hope.”

He recommended chemotherapy. I had three rounds, and the tumors grew. Next was palliative radiation. My nurse had just returned from a conference where she’d heard about a new targeted therapy drug that was making radiation therapy more effective for young Asian women. I was a 60-year-old white man, but we tried it anyway. And it worked.

Within a couple of weeks, the pain was gone and almost all the tumors disappeared. It was incredible. I was taking just one pill a day, and I felt normal again.

I continued to take the targeted therapy drug and had scans to watch for recurrences, which began after two years. Radiation therapy couldn’t take care of them, so I had a series of surgeries to have lymph nodes removed in my abdomen and hip, and an adrenalectomy to remove my right adrenal gland.

After eight years, the targeted therapy drug stopped working. My doctor recommended another specialist who suggested stopping the drug for about three months to kickstart it into working again. Success.

After 12 years and more recurrences, the drug stopped working for good, and I tried a clinical trial that combined a third-line therapy with a MEK inhibitor. It didn’t work. In addition, it caused lymphedema, and because I’d had all the lymph nodes removed in my pelvis and right groin area, it was excruciatingly painful.

An immunotherapy drug was being tested, and I wanted to participate in the trial, but all the scans I’d had affected my kidney function. My creatinine level was too high, so I didn’t qualify. I had a stent put in, which lowered the level, and I started the trial two months later. After one infusion, I became paralyzed on my right side because of a brain met in my left frontal lobe. That automatically eliminated me from the trial, and I had a craniotomy to remove the small tumor. I let the medical team keep it for research, and they discovered the tumor was filled with lymphocytes. After just one dose of immunotherapy, the drug had crossed the blood-brain barrier and was working! We wouldn’t have the treatments we do today if people like me weren’t willing to try new drugs in trials.

I went to rehab to regain my mobility. Every time they told me I wouldn’t be able to do something, like wash or wax my car, it was more incentive to prove them wrong. It takes longer than it once did, but I can still wax my car.

I resumed the immunotherapy and get infusions every three weeks. For two and a half weeks after each infusion, the side effects are rough and get worse as time goes on, especially the fatigue and shortness of breath. Sometimes getting out of a car is exhausting. My nose runs 24 hours a day, but a daily decongestant helps. The immunotherapy destroyed my thyroid, so I take a daily pill to replace the thyroid hormone.

I’ve been through a lot, but it’s a small price to pay for being alive. I walk my dog every day, and I credit exercise, my immune system, medicine and my attitude with making it this far. Without my wife’s support, though, I wouldn’t be here. She has devoted herself to learning about the latest research that may help me. At her urging, my doctor performed genomic testing four years after I was diagnosed, and we learned I have an EGFR mutation.

If you have lung cancer, learn about your diagnosis, find the right doctor and get the right treatment. Don’t give up. Now is the time to fight.

 

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