Christina’s Story: Living with Stage 4 (IV) ALK+ Lung Cancer

Christina H. and her husband, Eric, live in Leesburg, VA, with their 3 children. Christina works part-time at her daughter’s elementary school in between attending her children’s various sports and extracurricular activities. As a family, they love to travel together and make memories. Their favorite trips include going to the beach every summer and taking a cross-country trip in an RV. Christina enjoys advocating for lung cancer awareness and increases in federal funding and also focuses on individual fundraising to advance research for new treatments.  

My diagnosis

I was diagnosed with lung cancer in 2019 at 39 years old. I didn’t have many of the typical symptoms that can come with a lung cancer diagnosis. I didn’t have a cough or even notice any shortness of breath. My only complaint was that I had terrible and debilitating pain in my right hip. I assumed that I had injured myself exercising, but I couldn’t pinpoint exactly what I did, and the orthopedic doctors and physical therapists I saw were also puzzled. Physical therapy didn’t provide any relief; in fact, it just kept getting worse and my mobility was declining.

After months of enduring this pain, a lump in my neck above my collarbone popped up out of nowhere, and I started to have a sensation like something was caught in my throat. I visited my primary care doctor’s office, but she didn’t seem to think anything was wrong. My lab work was fine; I looked physically healthy, I was young, and my doctor didn’t see anything caught in my throat. She also thought the area above my collarbone felt the same on the other side. I had to insist on an ultrasound for further testing. When I went for the scan, the lymph nodes I was questioning were measuring well over 2 inches, and they told me I should have a biopsy right away. My mind went crazy trying to guess what it might be, but no one ever mentioned lung cancer to me. I didn’t fit the typical profile.

The biopsy confirmed that it was metastatic cancer (cancer that has spread). Further testing showed that it was stage 4 (IV) lung cancer. A PET scan also confirmed that the pain I’d been having in my hip was due to a 7-centimeter bone lesion. I never thought the pain could be cancer. All this news completely rocked our world.

ALK+ lung cancer

My doctors performed comprehensive biomarker testing right away. It wasn’t something I knew to ask for, so I’m grateful I was diagnosed in a place where they knew what to do. While waiting for the test results, I was scheduled to start immunotherapy and was in the doctor’s office getting counseling on that treatment when the nurse was called out of the room. She came back in with my biomarker test results and said, “Never mind. You have the ALK biomarker and you’re going to start taking this targeted therapy drug instead.”

I didn’t really understand what was going on until my oncologist called. He was excited to tell me that having the ALK mutation was very good news and that I would be able to take oral therapy—8 pills every day—and likely have a much better experience in treatment. I started taking Alecensa (alectinib) right away and I responded quickly. I could feel the lymph nodes in my neck shrinking within a few days and my voice, which had grown hoarse, returned to normal.

I’m thankful to say that I am still on Alecensa (alectinib) and I have tolerated it pretty well over the years. I do suffer from some fatigue and brain fog, and while the side effects are frustrating, I also know how lucky I am to have responded so positively for this long.

My new normal

The first year after my diagnosis was hard because even though I responded so well to treatment—and we definitely celebrated that—lung cancer was never far from my mind. It was all-consuming at first. You see everything through the lens of this terrible diagnosis: how long you have left, when and if the cancer will progress, how will you handle that. I was dwelling in a pretty dark place for a while.

Over time, living with a cancer diagnosis shifts your perspective on how you want to live your life. I knew that staying in that dark place of fear wouldn’t do me or my family any good. I started making a conscious decision to wake up and say, “Today is a blessing. What can I do to make great memories with my kids today?” Now, thinking like that has become my habit.

The fact that I have done well has helped me to live relatively “normal.” I don’t look like what people think a cancer patient would look like. For example, my kids know that I have lung cancer, and they know that I take medicine that is keeping the cancer away, but we don’t really get into the scarier parts of my diagnosis because we haven’t had to. As a family, we don’t live or act any differently than any other family because our day-to-day life hasn’t really changed that much.

I do find myself looking at my life with lung cancer in blocks of time, though. Studies indicate that if you respond well during the first year, you will likely do well for 3 years on the same treatment. Because of this, I felt a lot of “scanxiety” around 3 years, but my test results were clear, thankfully. Then they say that if you get to the 3-year mark, you’ll probably stay good for 5 years, so I felt like I could relax a little again. I’ve had some fear about getting to 5 years, because it seems like a lot of people progress around this time. In this way, the goal line keeps moving out, but the anxiety around scans never really goes away.

Hope for the future

The thing that brings me the most hope is knowing that if I do have progression, there’s a lot of new treatments and clinical trials in the research pipeline that could help me down the road. I don’t feel like this is it for me if Alecensa (alectinib) stops working, and that gives me a lot of peace.

I have also found hope, camaraderie, and knowledge in finding the ALK+ group. Connecting with them has been a game-changer for me. When you’re first diagnosed, especially when you’re young, your diagnosis seems impossible and you feel alone. After meeting other people living with ALK+ lung cancer, that all changed. Many of them are younger, like me, and are juggling families or careers while in treatment. It’s powerful to meet people who are so similar to you and have similar experiences. I also can’t overstate how much hope it’s given me to meet people with my exact same diagnosis who are living examples that 5 years is possible; 10 years is possible.