I want to share my personal story and motivation for expanding my research and data analysis services to include patient advocacy services, as I learned first-hand my experience and expertise is integral for the latter.
In May of 2015, my grandfather was diagnosed with Stage IV, non-small cell lung carcinoma (NSCLC), given a prognosis of one year to live and it was recommended that he “get his affairs in order.” The oncologist proposed a standard chemotherapy regiment, which my grandfather was told he could start almost immediately.
The idea alone, of my grandfather — a vibrant, healthy, former NH Chapter Chair of the Appalachian Mountain Club, who took us grand-kids on numerous hiking and backpacking trips — being diagnosed with cancer (let alone, Stage IV lung cancer) was in itself too much for me to assimilate at first. Yet, I had spent years studying cancer at the biochemical and molecular level, and knew his prognosis was dire. However, I also knew that chemotherapy — while commonly used to treat cancer — presents many undesirable side effects, oftentimes decreasing a patient’s quality of life. Furthermore, my grandfather’s tumor had undergone a pathological readout and the histology results indicated that his tumor had a k-ras mutation. I knew that KRAS is an oncogene, which drives tumor growth and proliferation, and with additional research into the primary, peer-reviewed literature, I found that recent studies had demonstrated that patients with mutant KRAS tumors failed to benefit from chemotherapy and that “there is a dire need for therapies specifically for patients with KRAS mutant NSCLC” (Riley et al., 2009).
With this information, I asked the oncologist about available immunotherapy options, with the hope that my grandfather’s quality of life could be better maintained, especially given the prognosis. Initially, the oncologist said he was unaware of any immunotherapy options at the providing hospital, but that he would look into it.
You can imagine I was thrilled to to receive a phone call shortly thereafter from my grandfather’s oncologist informing me that he found a clinical trial at the providing hospital using an immunotherapy for advanced lung cancer patients. He noted that the drug had not yet been FDA-approved and that in order to be eligible for the trial, my grandfather’s tumor would have to have PD-1 over-expression. Therefore, my grandfather’s tumor sample would have to be histologically examined again, this time for PD-1 expression. This meant another few days of waiting, which was a lot to ask my grandfather, who wanted to be pro-active about his diagnosis and get started on a treatment.
We discussed the pros and cons of waiting for another pathology readout. What if his tumor didn’t over-express PD-1 and he wasn’t eligible for the trial? Then, he would have waited an extra week or two without treatment. Additionally, there was another unknown: because it was a clinical trial, even if his tumor over-expressed PD-1, there was still only a 50% chance that he would be randomly assigned to the intervention arm of the study and a 50% chance he would be randomly assigned to the control arm cohort, which received the standard of care.
I am so grateful for my grandfather’s faith and patience, as waiting must have been incredibly emotionally challenging.
Thankfully, he was enrolled into the intervention arm of the clinical trial for Merck’s PD-1 inhibitor (pembrolizumab), which was not FDA-approved for lung cancer patients, but had been successful in trials treating patients with melanoma.
Immediately, after just three infusions with the immunotherapy, tumor volume decreased, as did the metastatic lesions.
In June 2016, over a year after my grandfather’s diagnosis, and six months after his last immunotherapy infusion, my grandfather vacationed for 15 days in Switzerland (a favorite place of his), which he did not think we would ever get to do again.
Today — more than a year and a half post-diagnosis — the metastatic lesion that was once palpable on his chest is no longer detectable, nor are the other distal metastatic lesions that were in his lymph tissue. Moreover, the FDA has since approved this drug for lung cancer patients with PD-1 over-expression, as preliminary clinical evidence showed that the drug may offer a substantial improvement over available therapies.
I can’t thank my grandfather enough for his patience, and involving me in this journey, such that his quality of life is maintained and that he can spend more time with my grandmother, our broader family, and his friends.