Tamara's Story

In January of 2020, upon the brink of the pandemic, Tamara, age 59, became short of breath. She had no other health issues and therefore knew that something was wrong. She, being her stubborn self, drove herself to Suburban Hospital's Emergency Room and over the course of a two day workup, was ultimately diagnosed with Stage IV Non-Small Cell Lung Cancer (NSCLC) and a poor prognosis. Her three kids flew into town to be by her side, every step of the way. Under the guidance of Georgetown University's Lombardi Cancer Center, we were advised to begin targeted therapy which thankfully, came in the form of a pill. When that stopped working, she underwent chemotherapy and thereafter, immunotherapy. Tamara regularly asked Dr. Kim, her oncologist, "If this stops working, what do you have for me next?" She was always planning, always ready to tackle the next step. 

In June of 2021, Tamara started to develop severe, debilitating headaches. Though they sometimes only lasted a minute, each day they seemed to increase in frequency. Eventually, her daughter took her to the ER and for the first time were introduced to the condition, "Leptomeningeal Disease" or LMD. LMD is a devastating condition in which cancer, most commonly lung and breast, metastasizes to the cerebral spinal fluid (the fluid that coats the brain and spinal cord). Symptoms can be complicated, ranging from a simple headache to even a seizure. Patients with LMD are often given 6 weeks to three months of life to live.

Thanks to our oncologist, Dr. Chul Kim, we were put in touch with Dr. Helena Yu. Dr. Yu's research on LMD through Memorial Sloan Kettering's Cancer Center led to over 12 months of additional time, almost entirely without symptoms. However, when it came time to return to the drawing board and Tamara asked, "what do you have for me next?", there were no further available treatments that aligned with her definition of a quality life. Although the amount of time never seems to be quite enough, our family is thankful for every last minute. 

About the Research

As the lifespan of people diagnosed with lung cancer has increased, there has been a simultaneous uprise in the prevalence of the once rare, LMD. Dr. Yu and her colleagues at MSKCC are currently working on therapy involving targeted radiation to the brain and spinal cord to better control the often fast metastasis throughout the area. We are hopeful that with further attention to this devastating disease, folks can become more prepared to treat and manage the wide array of symptoms and complications that may ensue.