My NSCLC Story

In November 2018, I was in the best shape of my life. I was 46 years old, married, going to exercise classes twice a week, walking 5+ miles a day, riding my bicycle 100+ miles a week, eating healthy, and drinking nothing but water. I had just started a new job 2 months prior. I decided to get a flu shot as I do every year. This is where my diagnosis with Stage 4 Squamous Non-Small Cell Lung Cancer starts.

I’ve never had any side effects from the flu shot, except for maybe a sore arm. 1 week after this flu shot, I noticed a lymph node had popped up on my neck. I just figured it was a side effect or maybe I’d picked up a virus or infection.

After 2 weeks with this swollen lymph node, I knew it was more than a virus, infection or side effect.

I called my Primary Care Doctor and made an appointment.  She drew blood and decided to send me for a CT scan.  A few hours after the CT scan, I got a call that there was something showing in my upper right lung.

She then told me to make an appointment for a CT-guided core biopsy. I scheduled this the day before my birthday. The following day – my birthday – my Primary Care Doctor called and told me that I had something called “non-small cell lung cancer.“

 I took this news well, but I was pulled over on the side of the road and had to keep it together to make it home. When I heard the news, I heard a loud bang, like an M80 firework, go off in my head. I felt like I was transported outside of myself and my life flashed before my eyes.

I got home and called my husband, who was at work. He came home immediately.  We both cried for a few minutes. I called my parents and told them the news. They were calm and started asking all the questions that I had no answers for yet.

I had to make an appointment with a Pulmonologist who put in a referral for a PET scan. Later that evening, I got the call that it was Stage 4 and to make an appointment with an oncologist. 

I did not like my first oncologist.  His personality just wasn’t working with mine. I felt like a number with him rather than a person. So I chose to get a second opinion.

I chose the second oncologist.  He seemed to be genuinely interested in my case, was younger (it felt like he was more up-to-date with things) and he was associated with a large University Hospital. I liked the fact I was given a choice of different treatments – Immunotherapy or clinical trial.

I chose Immunotherapy.  My oncologist prescribed 1 infusion every 6 weeks. I was terrified, but hopeful. Immunotherapy was the latest and greatest and may have less side effects then chemotherapy.  I was still worried that I’d have an allergic reaction. Thankfully, I had no allergy to the infusions.

However, I had side effects galore after the second infusion. I had panic attacks the first week from anxiety of it all. I couldn’t keep anything down (or in). I lost 30 pounds. I had massive fatigue. I couldn’t breathe all that well (my oxygen levels were fine, but I felt like I had a cinder block on my chest). I was so weak. I had unrelenting pain. None of this made sense to me, when 3 months ago, I was healthy.

During this time, I had radiation on my hips, pelvis and femurs. This was fairly easy, but I would cry so hard because I couldn’t get on the table. Between the weakness, Fatigue and pain in my femurs, I had to have the radiation techs move things slowly.

I came home, in the middle of radiation treatment, sat on my couch and heard a pop. The next day, I had Xrays and found that my left femur was broken. Unfortunately, because I was in the middle of radiation, I had to wait approximately 3 weeks to get it repaired. I could no longer walk. I had to get a wheelchair.

After my 3^rd infusion, I was due for a PET scan. The results showed I had progression. It was everywhere.  I had a golf ball sized knot on the top of my skull. It had metastasized to my shoulders, adrenal glands, ovaries, hips, pelvis, femurs, and ribs.

Unbeknownst to my husband and family, I was so sick, I was ready to stop treatments altogether.  This was not a life.

 However, my oncologist told me that my blood biomarker test had come back and I had a targetable mutation. It’s called MET Amplification.  My doctor immediately started me on targeted therapy (2 pills orally at home).

I had some gastrointestinal issues, as well as these weird visual “trails” (I saw rainbows on things that were in motion when I went from dark lighting to light.) My doctor then reduced my dose to one pill a day.

Within 1 week, the lump on my skull was gone. Within 2 weeks, I was able to get out of the wheelchair and use a walker. I was able to eat. My fatigue was mostly gone. The pain was almost gone. I was absolutely amazed how fast this miracle drug worked.

After 3 months of taking the targeted therapy drug, I had another PET scan. Most of the metastases were gone. The Lung nodule and adrenal gland nodules shrunk by about 80%. My hope exploded at this point!!

My oncologist scheduled me to have cryoablation on my adrenal gland nodule and Stereotactic Body Radiation Therapy on the Lung nodule.

I also broke the rod that was used to repair my femur. I had to get a partial hip replacement. That was easier to rehab from than the femur repair.

During the first 6 months after diagnosis, I had pneumonia once and contracted c-diff.

As of today, I am 5-1/2 years stable and still taking the same targeted therapy drug.

I advocate now for others to ask for biomarker testing, as well as other treatments. I also do peer to peer support and am available through phone/text/email.

lung cancer non-small cell lung cancer NSCLC patient stories

Last modified: June 26, 2024