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Luna Okada : She's a 1der

I was diagnosed with stage 4 ROS1-driven lung cancer at 54 years. I was a healthy and active wife, mother of two adult children, and working as a genetic counselor. Among my life roles, I now add being a 9-plus year lung cancer survivor. (In December of 2022, it will be 10 years since my diagnosis.) When I was diagnosed, I had a single, relatively small, lung tumor. Unfortunately, I had metastases

to my liver, (it was loaded with tumors), as well as significant bone metastases. My presenting symptom was abdominal pain. I’ve never had lung or breathing difficulties.

In late 2012, oncologists were routinely testing for EGFR and ALK mutations in patients like me. I was negative for both. Following that disappointment, my astute oncologist tested for a newly described mutation in ROS1… and 10 weeks after being found to have metastatic lung cancer, I started on crizotinib. I am very fortunate to still be on crizotinib, 114 months and counting.

I am very grateful to be alive, but the years since my diagnosis have been challenging times for me, and consequently, for my family. Four years into my treatment, I was found to have a metastatic brain lesion, not unexpected because crizotinib doesn’t cross the blood-brain barrier. Since ROS1, (and I understand ALK), brain lesions are sometimes atypical on MRI imaging, I needed the input of both Drs. Camidge (at Univ. of Colorado) and Hoffman (at Univ. of Chicago), to determine that it was, in fact, a metastatic lesion. I had CyberKnife in the spring of 2017. Although follow-up brain MRIs have noted some swelling of tissue surrounding the necrotic lesion, no new lesions have been seen in the past five years.

In 2018, probably due to a combination of my metastatic bone disease and medical misjudgments, I experienced a femur fracture following a hip replacement surgery for an arthritic joint. Unexpected complications resulted in 3 surgeries in 3 weeks, hospital acquired infections, and a month in the hospital. During that time, lung cancer wasn’t the priority, treating my infections with potent IV and oral antibiotics was, so I did not take crizotinib for a few weeks. I was very concerned that my body would not be able to manage recovering from a femur fracture, fighting off a few infectious organisms, and keeping my cancer at bay. But, it did.

My goal continues to be the healthiest, sickest person I know. I try to eat right, sleep right, and exercise daily. I anticipate this to be more challenging, as I age.

Overall, I continue to be a relatively healthy and active wife, mother of two adult children, working genetic counselor, and looking forward to grand motherhood. I am grateful for The ROS1ders, our Facebook group, the GO2 Foundation, CancerGRACE and other support organizations who have taught me so much about navigating the lung cancer jungle and brought me many new friendships!

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That is a long time. Be careful to watch the brain on that crizotinib (my doctor forgot). It doesn't pass the blood brain barrier as well as entrectinib but I chose xalkori at the time because its researched more--its mutations have been more saught after in drug design (I believe). I would suggest going to Lorbrena (to save repotrectinib for later) to follow the manufacturers on this one (I think entrectinib is kind of a dead end for now and where the money is on research for the future). Maybe ask your doctor for MRI once every 3 months without contrast (you can see the circles without the dye); thats what people at risk do-if you already don't.

Can you…


Jeff ack ackly
Jeff ack ackly
2023년 9월 05일

more than a 1der... an inspiration to us all... I wish you the best! wonderful story

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