As a stage IV adenocarcinoma non-small cell lung cancer (NSCLC) patient diagnosed in May 2013, the metrics were clear: 95 percent of patients with my affliction were dead at the two-year mark. My prognosis was an optimistic projection of nine months of life without treatment, or 18 months with treatment (chemotherapy or bust). Thirty-six months ago, after four cycles of chemotherapy, I was close to death and the only chance that I had for possible relief came in the form of an immunotherapy clinical trial.
I confronted many challenges, such as:
- Hemoglobin down to 7.2 - Requiring two blood transfusions
- Blood clot formations requiring the surgical implant of a filter to protect brain and heart; blood thinning injections for two months
- Pleural effusion - three liters of obstruction in my left lung
- Bleeding in lung and airway
- Pain in back, shoulder, and left arm from chemo side effect or cancer.
- Tethered to a heating pad, with little strength, limited mobility. and loss of 40 pounds
Walter Reed National Military Medical Center initiated an immunotherapy clinical trial referral to a regional hospital, as that immunotherapy clinical trial was not yet available at Walter Reed. Most importantly from my perspective, Walter Reed initiated a collaborative agreement with that hospital to allow Walter Reed to perform timely medical procedures to stop the bleeding through pulmonary surgery/freezing and radiation while continuing in the immunotherapy clinical trial.
Through this extended clinical trial I have received 78 immunotherapy infusions of anti PD-1 (Opdivo®) and 25 CT scans during the past three years, and I have enjoyed an active life with practically no side effects. The real hope for others in this example is the possibility of an activated immune system that can combat metastatic lung cancer disease without resistance or disease progression for an extended period of time.
I have engaged in an ongoing pleasant debate with my immunotherapy oncologist, who insists that my long-term immune system response is making history. From my perspective, I am merely a successful research data point in a clinical trial along with 20 percent of other long-term NSCLC responders. The real hope is in the research ahead to perhaps see combinations of yet-to-be-discovered treatments that might yield 100 percent long-term remission responses.
The importance of the extension of life for several months with limited side effects has enabled my family to engage in the selling and buying of homes, relocation to less stressful surroundings, and to focus on family priorities, such as my son's graduation from college in 2015, and two daughters graduating from college this spring.
Dr. Corey Carter, my oncologist and then-Chief Thoracic Oncologist of the Walter Reed National Military Medical Center, cultivated my interest in the Congressionally Directed Medical Research Programs' (CDMRP) Lung Cancer Research Program (LCRP). Dr. Carter's professional encouragement, recruitment, and sponsorship, led to my interview and first peer review assignment as a consumer reviewer for the LCRP in 2014. Soon thereafter, I was ramping up for the entire month of October- reviewing applications. As I spent countless hours trying to understand and assess the marvels of the lung cancer micro environment, I recalled the words of my friend Corey Carter: "John, it will only require about a week of your valuable time." Frankly, I think I spent nearly a week in the dictionaries in an attempt to decode countless medical terms.
In earnest, I was very much impressed with the Mission of CDMRP and the goals for the LCRP, whose Vision is to eradicate deaths from lung cancer, to better the health and welfare of military Service members, Veterans, their families, and the American public. To that end, the LCRP supports integrated research from multiple disciplines for risk assessment, prevention, early detection, diagnostics, and treatment for control and cure of lung cancer.
On reflection, the LCRP consumer review experience has been a deeply personal and a most rewarding experience for me. Where better to bear witness to the living knowledge of the lung cancer challenge? Whether we are scientists, medical oncologists, radiologists, or consumers, we are all focused on finding better ways to prevent and/or treat lung cancer and to ultimately find a cure for lung cancer. Being sequestered in a boardroom as a consumer reviewer with a dozen or more MD/PhD experts is a gratifying experience of unparalleled dimension.
The stewardship of the U.S. Army Medical Research and Materiel Command (USAMRMC) in guarding the public trust in the administration of the public funds is second to none.
Regrettably, LCRP research funding is woefully limited and the number of innovative applications from medical researchers engaged in lung cancer prevention, early detection, diagnostics, and treatment is significant. Hopefully, the road forward will continue to be with due diligence in funding the best priorities to eradicate lung cancer.
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Last updated Tuesday, November 1, 2016