My Story
In August of 2024, I was diagnosed with Stage IV ALK+ Lung Cancer. I had no symptoms, and I’ve never smoked. I was completely blindsided by this diagnosis. In fact, I wasn’t even feeling sick—just dealing with some hip and leg pain, which I thought would be easily resolved with physical therapy. How could someone healthy, active, and a non-smoker be diagnosed with such a serious disease, especially at stage four with hardly any warning? I had just celebrated my 50th birthday with a roller skating party at the Florham Park Roller Rink that spring. It made no sense. I went from planning a trip to Disney to wondering if I’d still be here by Christmas.
Finding out about my diagnosis just days before my dad passed away was incredibly difficult for both my family and me. We were living in a nightmare and were terrified—honestly, we still are.
It turns out, my story is sadly not unique.
Most people diagnosed with this type of lung cancer are non-smokers, of any age, with little to no symptoms, and often at stage four. There are no early screening tests for lung cancer. But two weeks into my diagnosis, we received some good news: I had a cancer mutation. I tested positive for the ALK+ mutation. At the time, I had no idea what that meant, so I googled "ALK+ Cancer" and found this website .
SHORT STORY:
I HAVE ALK+ , a spontaneous mutation of the ALK gene we all have—something anyone can get -no matter how healthy they are - RANDOMLY!
I feel better physically because I can take TARGETED PILLS called (TKIs) that are working…for now.
MY ALK+ specialist at Johns Hopkins has started clinical trials on a groundbreaking VACCINE!! he created that could keep the cancer under control for longer.
LONG STORY:
I’m currently receiving treatment at Hackensack Medical Cancer Center, and I’m fortunate to be under the care of top doctors. I’ve also sought second and third opinions with specialists of my type of cancer at Johns Hopkins in Maryland and Mass General in Boston. For all things cardiac, I’m being treated at Morristown Hospital.
This is incurable. I won’t “beat” it.
My pills called TKI’s (and there aren’t many choices) are keeping it from spreading and will stop working at some point - we just don’t know when, but fingers crossed something else comes up. Science is amazing.
I have no idea what is going to happen. That is what is scary and the internet is scarier so I avoid it. We’re all in therapy, and that is helpful.
I do have hope because of what I learned during my visit to Johns Hopkins Medical Center in Maryland, where I met with an ALK + specialist named Dr. Vincent Lam.
There are only approximately 12 ALK+ doctors in the U.S., and they’re all working hard to find ways to keep us “alkies” alive. I’ve seen two of the 12. One is at Johns Hopkins—Dr. Vincent Lam—and the other is at Mass General, Dr. Jessica Lynn. They’re my second and third opinion doctors.
When I went to see Dr. Lam, he told me that I’m doing everything I should be doing, and he’d be my second opinion doctor.
Then he mentioned a vaccine he’s working on.
He explained that he has developed what he hopes will be a vaccine for ALK+, and asked if I would like to be added to the list for clinical trials when it becomes available to more patients.
YES!
Dr. Lam believes in this vaccine, and he thinks it will stop ALK+ cancer cells from mutating further, allowing “alkies” to stay on their pills indefinitely if vaccinated. There's no guarantee, but his approach draws on the success of peptide vaccines. I’ll never be cured, but I could live longer if nothing progresses and my pills continue to work. This feels like hope!
How do we get this vaccine going for everyone immediately!?
Turns out, it’s really expensive to have a vaccine in a lab, conduct clinical trials, and everything else that goes with it at Johns Hopkins. Dr. Lam and some of his patients have been awarded grants, and I plan to raise funds and donate to Dr. Lam through a nonprofit LLC, LOVE4LUNGS.ORG (not live yet) and help advance the vaccine to the next phase of development. I also hope to raise awareness about lung cancer and mutations. When I first found out about my diagnosis, I walked out of the doctor’s office with no information about ALK.
In recent years, a few other remarkable patients with ALK+ have launched foundations — like this one SWEATFORBREATH.ORG — and raised funds to establish Dr. Lam’s lab and fund the initial round of the clinical trial. The first round started last May! This is actually happening. We hope to continue advancing these trials—opening the next phase, then the next, and so on until its available to everyone who needs it.
