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Next Generation Sequencing Helped Jo Mary Find a Clinical Trial

Jo Mary’s first symptom was a headache. It was so strong that it woke her up in the middle of the night and made her eyes water. When the headache kept returning on the right side of her head, she knew something was wrong. But she had no idea how hard it would be to get a diagnosis and treatment. 

Jo Mary after medical procedure

Jo Mary says she ran into trouble from the start because of her insurance. “I didn’t have great health insurance at the time so I was pushed around making appointments,” she explains. “My insurance made it hard to get in to see new doctors and it really affected the speed of things happening. When we realized I needed an MRI, for example, it was so difficult. I feel like I had to beg to finally make it happen.”

The diagnosis, when she finally got it, was non small cell lung cancer – stage 4. Jo Mary’s wife works in the insurance field (primarily home and auto) but her expertise proved pivotal in helping find a new, more robust health insurance plan and everything got easier after that. Scans revealed a mast the size of a fist in her liver and two cancerous spots in her skull. Her new insurance did not pay for her genomic testing and she spent $7,000-$10,000 of her own money on it. But the insurance was better overall and she says that was critical in setting her on the right path. 

Genomic testing  – also called Next Generation Sequencing or NGS  – analyzes a patient’s DNA to figure out what therapies will work best for them. It’s able to pinpoint the best treatment based on the specific cancer cells and genomic mutations, not on the type of cancer a patient has, – thus increasing chances of a therapy’s success. 

Jo Mary’s genomic testing led her to a targeted medication that worked for about 8 months, reducing the masses in her liver and lungs by 90%. But her headaches returned in January 2021 so her oncologist turned to her genomic test results once again to find a clinical trial that could help. She found one in St. Louis and since August 2021, Jo Mary’s been making the four hour drive there from Kansas every two weeks to take part in the two-pronged trial of an infusion and a daily oral medicine.

Jo Mary

While she’s had some procedures to remove lesions in her brain and lungs, the trial is working and her cancer is stable. But the 60-year-old yoga teacher and practitioner says the financial stress of getting to and from the trial was starting to add up. Before she found her way to Lazarex Cancer Foundation to get help with travel reimbursements, she spent thousands of dollars in just the first two months. Now 100% of her travel is reimbursed by Lazarex. 

“It’s such a gift to have travel and lodging expenses reimbursed because it’s not cheap. On average, it’s about $600 for hotel, gas and parking each trip. This last year, sometimes I’d fill my tank and it would cost $60,” Jo Mary says. “Lazarex takes the financial worry away totally. That’s why I started teaching my yoga class again when I began to feel better – to be able to give back.”

Jo Mary is doing well enough that she and her wife were just able to take a vacation on an airplane for the first time since she was diagnosed. They flew to Tucson and had a wonderful time. Jo Mary is now also back to teaching one yoga class a week and regularly collects donations from her students to give to Lazarex to help others. So far she’s donated almost $3,000. “It’s about gratitude. I believe when you are grateful, you should express that, and for me, gratitude is medicine,” Jo Mary says. “It’s also really important to me to now do what I can to help others, to make sure they get the same incredible help that I’m getting.”

Learn more about Next Generation Sequencing (Genomic Testing) HERE.