Amie's story is like so many of the rest of our stories. She was a young and healthy runner and mother of two. In April of 2017, she started to cough. During her first visit with a doctor, she learned the three main causes of cough in a non-smoker: allergies, asthma, and acid reflux. After several months and treatment attempts for all three a chest x-ray showed something suspicious leading to a whirlwind of tests that ultimately resulted in a diagnosis of stage IV adenocarcinoma of the lungs in October of 2017.
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Amie was fortunate to have cancer centers nearby that were knowledgeable and aware of biomarker testing. Her biopsy showed that her cancer was ROS1+, and her oncologist at Seattle Cancer Care Alliance started her on crizotinib as her first-line treatment.
Crizotinib had her back on her feet teaching within two weeks and all was fine until routine scans detected a small brain metastases in the fall of 2018. To treat the brain metastases, and continue crizotinib as a treatment for as long as possible, Amie underwent Stereotactic Radiation Surgery (SRS). This procedure was successful with subsequent brain MRIs showing the brain was clear of metastases.
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In the fall of 2019 chest scans showed slow but definite progression of cancer in a lymph node. Amie was disappointed to have her first line of treatment fail her so soon, but there was a new trial available that looked promising: repotrectinib. Trials can be difficult to qualify for, and Amie had to wait for the progression in her lymph node to grow large enough to qualify her for entrance into the trail. By December, qualifying scans showed it was large enough to enroll in the trial, along with another surprise: another new small brain metastases.
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Repotrectinib, like crizotinib, was successful in knocking back the progression and holding Amie's cancer below the neck stable. It also treated the brain metastases, rendering SRS unnecessary this time. Patients often expect when starting a new TKI that progression will likely be what forces them off of it. Unfortunately, how a patient's body reacts to a drug can also force a patient off of a drug. Amie did amazingly well on repotrectinib for about 18 months, but then she developed pneumonitis. Trial protocols were followed to resolve and treat the pneumonitis, but when it returned in the fall of 2021, Amie had to exit the repotrectinib trial.
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With two TKI's under her belt and yet another small brain metastases, Amie turned to a TKI not FDA-approved for use in ROS1+ patients but often used to great success off-label to treat ROS1+ cancer: lorlatinib. Again, Amie has seen great success with her new TKI. At the time of starting lorlatinib, the only measurable cancer was the brain metastases, and that was shown to have gone away during the first set of follow-up scans.
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The starting, failing, stopping, and starting again of treatments can be a real rollercoaster ride that has many patients feeling like their continued health is out of their control. Amie and her supporters have tried to turn the tables on lung cancer by hosting an annual Lungbuster 5k to raise money for research. Amie says "Now more than ever I feel the pressure to keep that research rolling. I’ve got a lot to live for!"