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I was dx with Stage 4 non-small cell squamous lung cancer in December 2018 (on my birthday) at 47 years old. My only symptom was a swollen lymph node in my neck that didn't go away after a month. Blood work only showed a slightly elevated calcium level (should be between 8.6 and 10.4mg - I was 10.6)...normally wouldn't raise the alarm. However, I had a history of smoking, so my doc suggested a CT scan. The CT scan was from my neck to top of lungs. It showed a mass in my right lung. Doc then sent me for a biopsy of the lymph node & it showed NSCLC squamous. Next up, PET scan...was only in my lung and lymph mode. Onco put me on Keytruda because my PDL1 was 100%. Oh, the side effects were terrible. I lost 30 lbs and believed that I was close to death. At the end of 3 months, my onco did another PET scan. Now, my cancer was on my skull, shoulder, lymph nodes, adrenal glands, ovaries, hips, femurs and foot. By this time, he had gotten back my biomarker testing. I had MET amplification with 3 others, but MET amplification was high, so he put me on Crizotinib (Xalkori). During this time, I had radiation on my hips, femurs and foot. In the middle of radiation, I broke my femur (left) and foot (right). I was unable to have my femur repaired for 3 weeks. There were no painkillers to help this pain. I didn't take a shower for 3 months, because I couldn't get upstairs. I finally had my femur fixed (had rod installed) and foot was in a boot. Crizotinib started working within a week. The lump on my skull went away. I could breathe better and my lymph node was gone. I had to cut down from 2 tablets a day to one, as I did have some side effects. I had SBRT to my lung lesion and had no side effects. It shrunk my lung lesion. In 2020, my rod in my femur failed and I had to have a partial hip replacement. I'm happy to say, I have no pain anymore & wish I would have been given that option in the beginning. I also had cryoablation done on my adrenal gland. As of today, I am 22+ months stable and I'm still on Crizotinib. I only light up some in my lung and one adrenal gland. They both may still be residual inflammation from the SBRT and cryoablation. In between these past 2 years, I had pneumonia once, pain in adrenals and c-diff which required a weeks stay in the hospital. So, hold on to hope!! Get a great onco and team (preferably a bigger university hospital or cancer only center). Do as much research as you can and advocate for yourself!!
LUNGevity Foundation, the nation’s preeminent lung cancer research foundation, today announced that Alice T. Shaw, MD, PhD, has joined LUNGevity’s Scientific Advisory Board, a group of 20 world-renowned scientists and researchers that guides LUNGevity’s research program. The Scientific Advisory Board is integral to the Foundation, overseeing the scientific strategy and ensuring that grants are awarded to the researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as extending and improving lives of lung cancer survivors. LUNGevity is the only lung cancer organization with a programmatic focus on early detection and Career Development Awards. Our researchers are working on finding a better way to detect lung cancer, and to better diagnose, treat, and prevent its recurrence. The research program is a crucial factor in moving the science forward to improve outcomes for people living with lung cancer. Dr. Shaw is the Director of the Center for Thoracic Cancers and the Paula O’Keeffe Endowed Chair of Thoracic Oncology at Massachusetts General Hospital. She is also an Associate Professor of Medicine at Harvard Medical School. In addition to caring for patients with lung cancer, Dr. Shaw performs clinical and translational research. Her clinical research focuses on subsets of NSCLC that have unique driver mutations, such as EGFR, ALK, and ROS1. Her translational research focuses on understanding and making clear the mechanisms of resistance to targeted therapies; she is currently developing novel combination treatment strategies. Her research has helped to develop numerous FDA-approved targeted therapies for patients with oncogene-driven NSCLC, such as crizotinib (Xalkori®) for patients with ALK or ROS1 rearrangements. “We could not be happier that Dr. Shaw has joined our Scientific Advisory Board,” said Andrea Ferris, President and Chairman of LUNGevity Foundation. “She is a brilliant thinker, an innovator, and a compassionate advocate for her patients. In particular, her groundbreaking work that led to the development of Xalkori® has extended and improved the lives of many NSCLC patients. Her expertise and counsel will advance LUNGevity’s goal to increase and improve survivorship for those affected by lung cancer.” Read the full press release here.