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By Leah Phillips, as instructed to Janie McQueen
I used to be recognized with lung most cancers in December 2019. I by no means even tried a cigarette. I didn’t develop up round secondhand smoke. However at first, earlier than I had biomarker testing, docs instructed me they hoped I’d be alive at Christmas the next 12 months.
In September 2019, it began with a cough that was persistent and didn’t go away. Finally I used to be misdiagnosed with pneumonia. Then I went in for an additional CT scan and it confirmed lytic lesions — most cancers spots — in my backbone. A bone biopsy confirmed they’d unfold from my lung to my backbone and pelvis.
The oncologist recognized me with stage IV lung most cancers and was prepared to start out me on chemo and immunotherapy. In the meantime, my husband linked with Dr. Leora Horn at Vanderbilt College Medical Middle by electronic mail over Christmas break. She mentioned, “Completely, don’t let her put one drug in her physique.” She needed me to do biomarker testing, and if I have been to start out chemo or immunotherapy, it might trigger a tyrosine kinase inhibitor (TKI) drug remedy I’d attempt as a substitute to not work.
The Turning Level: Biomarker Testing
The important thing turning level for us – my husband has been my associate each step of the best way – was getting biomarker testing. At massive hospitals, that’s the very first thing they do. However many smaller hospitals, like these close to us, aren’t analysis pushed. You might want to get a second opinion and biomarker testing. It’s your life.
So mine got here again exhibiting a genetic mutation referred to as an EGFR exon 19 deletion. What breaks that gene and permits lung most cancers to develop? Radon publicity.
What’s Radon?
Radon is an odorless, tasteless fuel emitted by way of limestone. Sure areas of the nation, like Colorado and Tennessee, have a lot of limestone within the floor. It’s emitted each day, however diluted within the air a lot that it’s not a hazard.
However there may be excessive radon publicity and radon poisoning emitted by way of the limestone that homes or buildings sit on. It might get trapped within the constructions, so that you breathe it in. It takes 5 to 25 years for the radon to interrupt the gene.
The EPA measures radon by pCi, aka picocurie or “pico” for brief. It’s the speed of radon’s radioactive decay. A degree 4 or beneath is deemed OK. But when, for instance, you’ve a pico studying of 20 in your house, it’s the equal of smoking 40 cigarettes a day. And although that pico degree is excessive, it’s not even tremendous excessive.
I grew up in Kentucky, the place radon is prevalent. It’s ever altering. You actually should have radon examined each 2 to three years. In case your radon degree comes again excessive, you’ll be able to decide to have it mitigated. This implies you’ll be able to have a fan positioned in your attic. Then a pipe sucks the radon out of your home and expels it, however retains a continuing stream.
I might attempt to hint again the place I used to be uncovered to radon, however my vitality is best spent transferring ahead with my remedy.
Focused Remedy a Success
Focused remedy is a kind of most cancers remedy. It zeroes in on proteins that direct the division, development, and unfold of most cancers cells. My physician at Vanderbilt prescribed Tagrisso (osimertinib mesylate), an permitted focused remedy for individuals with EGFR exon lung most cancers.
The best way it really works is, that gene is damaged, however focused remedy methods your physique into pondering it’s nonetheless intact. Typically the most cancers catches on that it’s not the true deal and mutates.
I began on Tagrisso in December 2019. By December 2020, the first tumor had shrunk by 70% and all my bone mets — brief for metastases, or most cancers cells which have unfold to the bones — had healed.
We made the choice to be aggressive and proceed with eight excessive powered SBRT, aka stereotactic physique radiation remedy. This remedy makes use of tremendous centered, sturdy radiation doses that assault most cancers cells however aren’t as dangerous to wholesome tissue. In concept, this killed any remaining most cancers cells that have been current in my major tumor. I’ve remained on Tagrisso and haven’t had any development.
My situation has remained secure, with no most cancers development.
They are saying focused therapies like Tagrisso may be efficient for two to three years earlier than it stops working. Properly, it’s been nearly 3 years and it’s nonetheless working. Tagrisso is a brand new drug — it was permitted in 2018 — so actually the jury remains to be out on how lengthy it will probably final. I don’t assume the projections have in mind the general well being of the individual, both. I’m very match and energetic, a busy mom of three, solely 43 years outdated on the time of prognosis and at the moment 46.
The Takeaway, So Far
I feel a significant plus for us on this journey has been that we’re educated individuals. We all know to not simply belief what one physician says. We all know the way to be our personal advocates. I used to be operating about 20 miles per week, and caring for teenagers ages 8, 12, and 13, after I was recognized. I used to be like, “I can’t be finished right here.” I wasn’t keen to take this “two years to dwell” sentence. We rapidly turned our personal advocates as a result of we needed to be.
Lung most cancers is a really lonely most cancers. Most individuals recognized with it are older and have smoked. The overall notion is, “You smoked. You probably did this to your self.” Properly, for one, I don’t look sick. It’s an enormous stigma you don’t deserve. No different most cancers appears as isolating. For instance, individuals empathize with you extra you probably have a situation like melanoma.
For these of us who’re youthful – we make up 20% of lung most cancers diagnoses – we’re rolled in with everybody else. It appears individuals don’t wish to commit vitality to analysis and funding as a lot as different sorts of most cancers. This can be a laborious most cancers to have.
However we forge forward. We drive 3 hours each 3 months from Louisville to see these specialists. I keep a ardour for elevating consciousness that anybody can get lung most cancers and for sharing what has labored for me.
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