Elizabeth S., NC

I’m Elizabeth Speight. 

I was a healthy mother of three, a wife, a Navy veteran, and a practicing Nurse Anesthetist of 37 years. My life abruptly changed on November 17th 2017. While at work I developed chest and neck pain.  After my shift I went to the ER where a CT scan showed I had a large lung mass attached to my heart and chest wall.
  
After extensive testing I was told I had Stage IVB NSCLC.  The opinion was that my disease would be rapidly terminal.  I had metastatic disease in the lymph nodes around my aorta, my brain, my spine, my hip bones, my liver and my kidneys. With chemotherapy the prognosis was that I had 4 months to live.  I was devastated.  I had never smoked and had believed that non-smokers didn’t get lung cancer.  No physician I had ever seen for my routine yearly screenings had ever suggested I had any risk, or that I needed any screening exams for lung cancer.

In an attempt at a Hail Mary, my oncologist sent part of my tumor for biomarker (genomic) testing.  Because I had such a burden of cancer, they began radiation treatments to my brain and chemotherapy to palliate my rapidly progressing symptoms.

The genomic testing confirmed a RET mutation that was known to drive the cancer but didn’t have a targeted treatment.  Palliative treatment was my only option.

My husband, through extensive research, found a physician who was studying the RET driver mutation.  Only weeks into my diagnosis I was already unable to breath or walk any distance and I required a wheelchair to move through the airport when I went to Boston to see him.

The oncologist was at once both encouraging and not.  He understood my mutation and the protein it created that drove my cancer, but there was only one study drug that was just coming into a Phase I trial.  Because I had not “failed” the conventional treatment, four rounds of chemotherapy, I couldn’t be included in the study. It was only for RET mutated cancers that had failed the traditional therapy.

I managed to survive three more treatments and was still “alive” enough to qualify for the trial.

I’m here five years later, not with my health restored, but with my cancer held in check.

My three children, racing to the alter because they wanted to share their weddings with their mother, were married within 14 months after my diagnosis. I got to witness and participate in all of their ceremonies. I’ve celebrated the birth of two grandchildren, my mother's 97th birthday, and my husband and I renewed our wedding vows on our 30th wedding anniversary.

The miraculous leaps in treatment of lung cancer from previous research helped me immensely, and I will be forever grateful for those who forged the way.  I’m a true outlier in medical terms and am bending the curve in a positive fashion for survivors.  

During the study, I spent days in the pharmacokinetics lab having my blood drawn and  EKG’s performed.  My progress was followed with frequent CTs and MRIs to establish the effectiveness of the treatment. My circulating DNA was sampled to  develop diagnostic testing so others could benefit in the future.

Speaking from my personal viewpoint, without this drug trial I would have died quickly, another statistic on a graph. Simple as that. A large number of people are affected every year with lung cancer.  They love life as much as I do, and they are in desperate need of proven medical treatments and the opportunity to participate in a trial if proven treatments don’t exist. At my initial diagnosis I had a big disease burden, the chemotherapy and radiation quickly took a lot out of me, but after discovering a clinical trial I had to give it a try.

From a medical viewpoint, as a result of my participating in this drug trial, I’ve helped pave the way for future people diagnosed with the RET mutation. They no longer have to have their brain radiated or their bodies subjected to toxic chemotherapy prior to starting targeted therapy. I also know that people with other RET mutated cancers can benefit from my trial participation that led to this new therapeutic, (RET mutations in colon, prostate, and thyroid medullary cancer), once considered organ specific is now looked at based on cellular mutation. It gives me great peace in knowing that perhaps I’ve helped someone else have more time with their family and loved ones . As my health improved, I realized the impact my drug trial participation had on my life. Many study participants have predeceased me and statistically one day my cancer will figure out how to resist my targeted treatment. When that time comes, I will look again for opportunities to participate in the next generation drug trials. 

My story of survivorship is unusual for its critical path of testing, discovery of a clinical trial and just-in-time treatment.  It is indicative of how fast diagnostics and therapeutics are advancing due to active research and the acute need for expanding the use of comprehensive genomic testing and access to clinical trials. 

My personal motto and encouragement to others is “NEVER give up, ALWAYS have hope, and LIVE your life.”