Community Member Spotlight: Sam

LungCancer.net is dedicated to highlighting the stories and experiences of community members living with lung cancer. Sam was diagnosed with stage 4 NSCLC in 2015 after being misdiagnosed with asthma and bronchitis. Since her diagnosis, Sam has become dedicated to supporting others in the lung cancer community. A few years ago, she started a Facebook support group where ALK-positive folks can connect called ALKies Unlimited.

This is Sam's story...

From misdiagnosis to stage 4 cancer

I was diagnosed in April of 2015 after initially seeing my PCP for several months for what we thought to be asthma/bronchitis. By the time I was diagnosed with lung cancer, I had stage 4 NSCLC adenocarcinoma and was found to have the ALK gene mutation.

My targeted therapy treatments

I was started on an oral targeted therapy drug (Xalkori) which worked exceptionally well with few side effects for a little over 2 years. At this time I had progression and a new targeted therapy drug (Alecensa) had come out. I have been on it for nearly 5 years now. At this time I have had progression again and recently underwent radiation therapy and am currently waiting to get a CT scan to see if the treatments worked.

Advice to those newly diagnosed

My advice to the newly diagnosed: Do not lose hope. Lung cancer is not the automatic life sentence that it once was, there are new and better treatments coming out all the time.

I advocate by sharing my story

I advocate by sharing my story with anyone that will listen in person and/or on social media as well as donate to research. In the past, I have participated in walkathons and hope to again soon.

Being an advocate means bringing awareness to this most misunderstood cancer and trying to eliminate the stigma of smoking that is associated with it.

Building a strong, supportive community

I was introduced to another ALK patient that my oncologist was treating (Merita Carroll) and she told me about a Facebook group she was starting (ALK Positive) at the time there were only a handful of members but it put me on the road to making connections and meeting others who were also diagnosed with this relatively rare cancer.

The organizations that I have found most helpful are Inspire, Lungevity, and ALK Positive.

In fact, I started my own private Facebook group called ALKies Unlimited where people can share anything they want whether cancer-related or not. It is a place to get away from some of the "heavy" stuff and have a little fun with other ALK-positive folks!

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