How I Determined to Maintain Out for the Finest Lung Most cancers Therapy

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 yr. 

In September 2019, it began with a cough that was persistent and didn’t go away. Ultimately I used to be misdiagnosed with pneumonia. Then I went in for one more 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 related 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 wished me to do biomarker testing, and if I had been to start out chemo or immunotherapy, it may trigger a tyrosine kinase inhibitor (TKI) drug remedy I’d strive as an alternative to not work. 

The Turning Level: Biomarker Testing

The important thing turning level for us – my husband has been my companion 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’ll want to get a second opinion and biomarker testing. It’s your life.

So mine got here again displaying a genetic mutation known 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 gasoline emitted by 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 will be excessive radon publicity and radon poisoning emitted by the limestone that homes or buildings sit on. It may well 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 stage 4 or beneath is deemed OK. But when, for instance, you have got a pico studying of 20 in your house, it’s the equal of smoking 40 cigarettes a day. And although that pico stage 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 stage comes again excessive, you possibly can choose to have it mitigated. This implies you possibly can have a fan positioned in your attic. Then a pipe sucks the radon out of your own home and expels it, however retains a relentless stream.

I may attempt to hint again the place I used to be uncovered to radon, however my power is healthier spent shifting ahead with my remedy.

Focused Remedy a Success

Focused remedy is a sort of most cancers remedy. It zeroes in on proteins that direct the division, progress, and unfold of most cancers cells. My physician at Vanderbilt prescribed Tagrisso (osimertinib mesylate), an authorized focused remedy for individuals with EGFR exon lung most cancers. 

The best way it really works is, that gene is damaged, however focused remedy tips your physique into pondering it’s nonetheless intact. Generally 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 — quick 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 targeted, robust radiation doses that assault most cancers cells however aren’t as dangerous to wholesome tissue. In principle, this killed any remaining most cancers cells that had 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 progress. 

They are saying focused therapies like Tagrisso will 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 authorized in 2018 — so actually the jury continues to be out on how lengthy it might final. I don’t assume the projections bear 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 analysis and at present 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 how you can 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 completed right here.” I wasn’t prepared to take this “two years to dwell” sentence. We rapidly grew to become 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 final 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 if in case you 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 dedicate power to analysis and funding as a lot as different sorts of most cancers. It is a onerous 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.