In October 2013, I got a bad cold with typical symptoms (congestion, cough, aches). The cold dragged on for much longer than usual, so I finally went to the doctor on November 2. The doctor ordered a chest X-ray, declared my lungs clear, told me I had a viral infection and sent me home with an Rx for codeine cough syrup. I later learned that X-rays rarely detect lung cancer until it is very advanced. A low-dose CT is a much better tool for lung cancer screening. 

My cold improved slightly, but a dry cough lingered on and on. So, I went back to the doctor on December 2. This time the doctor told me I had irritated airways and gave me an Rx for an albuterol inhaler and a Z-pack of antibiotics “just in case.” Despite the meds, the cough persisted, and in fact I started coughing up a bit of orange stuff (blood), so I went back to the doctor on December 18. 

Again the doctor told me that it was irritated airways, but upped my prescription to steroids, giving me an Rx for an Advair inhaler, and then prednisone. I flew out of town to visit my parents for the holidays and despite the drugs, the cough continued to get worse. My mom pushed me to get another chest Xray, which I did, visiting an ER on December 26. The ER doctor told me I had pneumonia and suggested I get a chest CT upon returning home. 

I got home on January 2, saw a pulmonologist on January 3 who sent me to get a chest CT that very day. Upon seeing the dramatically bad results, he scheduled me for a lung biopsy asap.

On January 10, 2014, I had a lung biopsy and was diagnosed with Stage 4 Non-Small Cell Adenocarcinoma. I was admitted to the hospital and started aggressive chemotherapy 2 days later. Scans of my bones, liver and brain show no evidence of spread beyond my lungs (knock wood please!). I have tested positive for the rare ROS1 genomic alteration. 

What I didn’t know in 2017 is that The ROS1ders would revolutionize the way patients with rare cancers are able to mobilize the research community and push for more treatments. In fact, when the volunteers at our non-profit first reached out to top cancer researchers to find out how they could get access to new treatments, they were told that to accelerate research into ROS1, scientists needed more cancer models, a critical tool that researchers use to see how cancer cells grow or respond to treatment which is sometimes in mice and sometimes human cancer cells in a petri dish.

 To do this, they needed tissue samples from cancer patients, and we all accepted the challenge without a moment’s hesitation. We knew we could get them the samples. We organized amongst ourselves, collaborated with other organizations and the top researchers and ultimately created a system for patients that when they were going for otherwise necessary procedures, if there was extra material or pleural fluid that’s generally thrown away, we would find a way to get it to a lab to create cancer models with it. 

Since then, the ROS1ders group has helped create a library of specimens, including sourcing 11 cell lines (before they mobilized there were only two known in the world). To this day, they’re still collecting samples and they’re not stopping anytime soon. 

We’ve created many more cancer models than previously existed. Research is happening and papers are being published based on that research.  And other groups are following in the footsteps of this organization. My co-founder and I have had several meetings with other biomarker groups that are trying to start up. There is a growing movement of patients forming these groups and advocating for themselves. We’re valuable participants, not just passive fundraisers. We’re speaking and having a seat at the table.

My story of a mis-diagnosed nagging cough for weeks and months on end is, unfortunately, a common one in the lung cancer world. 

What would I do differently if I knew what I know now?  If I had known then what I know now, I would have pushed for a chest CT much sooner. Lung cancer does happen to people who don’t smoke. I also would have considered taking Xalkori right away, since this targeted treatment might have controlled my cancer more effectively from the start. 

And my advice for others? Don’t just settle for what your doctor at a community hospital says. It’s really important to get a second opinion. I also recommend getting genetic testing as soon as possible. I’m amazed at how many people don’t know about it or don’t get it for weeks or even months. 

I began sharing my lung cancer experiences early on there wasn’t a lot out there until the new targeted medicines came along, people died pretty quickly. If you have an unexplained cough for more than three weeks, ask your doctor for a chest CT. It could save your life.

Find out More about The ROS1ders on their WebsiteFacebook or Youtube Channel

Have been diagnosed with Lung Cancer? Investigate above and join their PRIVATE Facebook Group for support as well.

Visit with Lisa on her Blog or Follow her on Twitter or Instagram.


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