In December 2013, Michelle Leonard wasn’t too concerned when she felt a pain in her right chest. “I kind of thought, ‘Well at least it’s the right side, not a big deal,’” she says.
But then she developed a fever and decided to go to her primary care physician. Her nurse practitioner sent her for a chest X-ray.
“I almost talked her out of it. I said, ‘I’m not coughing. It’s just a weird fever.’” But the nurse practitioner wanted to be on the safe side.
On the X-ray, physicians found that Leonard had pneumonia with some “questionable spots,” as Leonard puts it. Soon after, a CAT scan of the chest was booked, and once it was confirmed that there was indeed a mass in her right lung.
This would be the beginning of her journey with lung cancer at Dana-Farber Brigham Cancer Center, where she would receive an innovative type of treatment called immunotherapy — and where she met a care team that helped her cope through it all.
“I always call them my family, my Dana Family,” Leonard says of her care team.
A shocking diagnosis
After the CAT scan, Leonard consulted with her husband. They decided to make an appointment at Brigham and Women’s Hospital (BWH), which was only about a half hour’s drive from their home in Quincy.
Physicians at BWH performed a biopsy, which confirmed that Leonard had adenocarcinoma, a common lung cancer that forms in glands that secrete mucus. A PET scan was performed which showed that her cancer had spread to the lymph nodes in the middle of her chest, which meant it could not be treated with surgery upfront. So she was referred to David Barbie, MD, of Dana-Farber’s Lowe Center for Thoracic Oncology, who quickly prescribed an aggressive round of chemotherapy and radiation.
An unexpected setback
Leonard was only 43 at the time, very young for a lung cancer patient. But the treatment was still tough.
“I was constantly getting dehydrated and was always tired,” she recalls.
After treatment, scans seemed to show that Leonard’s disease had all but totally disappeared, aside from a small spot in the primary which was removed with a surgery. To be safe, Barbie placed her on a low dose of what Leonard calls “maintenance chemo.” A PET scan showed promising results near the end of 2014, and Leonard seemed to be in the clear — until the following March.
“All of a sudden I started getting headaches and was kind of having this vertigo sensation,” says Leonard. One morning she woke up and the symptoms were so bad that she called Barbie’s office, who advised her to go to the emergency room and have an MRI done.
In the hospital, Leonard had a CAT scan and MRI scan which showed that her disease had spread to her brain, a huge shock to Leonard and her family who thought she was clear of the cancer. Despite this disheartening news, Leonard was determined to do whatever she could. Another course of radiation was administered to her brain, along with surgeries to remove the tumors.
Throughout all this, she thought of her three children, one of whom has autism.
“That first part of my journey was hard, very hard. I remember thinking that I can’t leave them now, and that I can’t leave that for my husband to handle alone,” says Leonard.
Luckily, she had great support from her family: Her sister and sister-in-law came to visit, and her husband, Tom, was there throughout.
“Tom was and still is my rock,” says Leonard.
A chance with immunotherapy
Around this time, Barbie approached her about immunotherapy. At the time, back in 2015, a promising drug, nivolumab had just made its way through clinical trials and was in the process of being approved by the U.S. Food and Drug Administration (FDA). Barbie had been following the drug’s progress and knew that Leonard would be a likely candidate. The treatment team stained her brain lesion for the PD-L1 protein, and when they found that it was present, they convinced her insurance to let them treat her with nivolumab.
To explain this type of immunotherapy, Barbie makes the analogy that some tumors are like the planets in sci fi movies that are surrounded by force fields. The T-cells in your body are essentially the ships trying to attack the planet, but PD-L1 is the force field. So, when T-cells attack the tumor they are “exhausted,” or essentially repelled, by the PD-L1 protein.
Immunotherapies like nivolumab and pembrolizumab are antibodies that prevent the PD-L1 from binding to the T-cells. “So, it’s literally like shutting off the force field and allowing the T cells to attack,” says Barbie.
At first, Leonard got worse, says Barbie. She was admitted to the hospital for a few different health problems. Then, following an MRI, Leonard got some great news.
“Lo and behold, all her lesions had melted away within three weeks. It was remarkable,” says Barbie.
“From that point on, things went well,” says Leonard. “Everything was quiet. It’s strange, because finding those brain tumors felt like a huge setback, but had they not found them and tested them I wouldn’t have been put on the immunotherapy.”
Leonard remained on the treatment for about five years, going in every other week for treatment, and then tapering off to every three weeks, then to monthly visits, and finally to every other month before she was taken off the treatment. Barbie says that these days, immunotherapy patients aren’t on the drug for that long. Treatment usually only lasts about two years and the practice has shown a lot of promise.
“Now, immunotherapies have been approved for treating eligible patients upfront with chemo. You no longer have to wait and see if chemo will work alone, you can give them together,” explains Barbie.
Back to fulltime motherhood
After the worst of it was over and Leonard was no longer stuck in bed, she kept busy caring for her children, and by visiting her church and the Quincy YMCA where she went for walks.
Almost a year out from her final treatment, Leonard has found that she misses the people that were around her for the last six years.
“I had two really good social workers, Allison Dibiaso and Bobbi Allison, and a nurse practitioner, Pamela Calarese, NP, who helped me to cope, mentally and emotionally. They were always there, and the rest of the staff too. When you go almost every other day, you get to know people,” she recalls.
These days, her own family keeps her busy.
“I’m always moving, picking people up and dropping people off. It keeps me so busy, but as much as I hate it, I know that I’d miss it if it was gone,” she says. “And ever since my treatment I’ve just wanted to savor every moment and let them know that I’m always here for them.”