Many Thanks to Our Contributors...
Our Lung Cancer Journey:
Elizabeth Lacasia, Author and Editor. In late 2006, Elizabeth was diagnosed with stage IIIB / stage IV, adenocarcinoma, predominantly BAC (now known as ?in situ?). She has undergone two major lung surgeries; a lower left lobectomy and the following year a wedge resection of her upper right lobe. Elizabeth's first treatment round was a clinical trial combining Carboplatin, Gemzar, Avastin, followed by maintenance Avastin. Her second treatment round (12/2009) was a clinical trial using a novel timing combination of Tarceva and Alimta, two years later followed by maintenance Tarceva during which she attained NED (No Evidence of Disease) status for a total of four and a half years. During 2014, a second round of genomic / biomarker testing (Foundation One CDx) identified Elizabeth as having the ROS1 fusion mutation changing her previous non identified genomic designation from “Wild Type” (2009) as the breadth of diagnostic biomarkers and genes had vastly improved. After progressing, Elizabeth started a targeted therapy regimen, Xalkori in 2014, again attained a NED status and continues on this treatment regimen to this day. She has participated in numerous clinical trials, supported other patients as a Patient Advocate, and advocates LC patients seek out lung cancer advocacy organizations to help guide them through this tumultuous process.
Valerie Brosdal. In August 2013, Valerie was diagnosed with stage IV NSCLC adenocarcinoma, subtype acinar. It took 3.5 years from initial symptoms (chronic cough, shortness of breath, fatigue) for an accurate diagnosis, even though she was very diligent in meeting with many doctors during that time. After two biopsies, she was told that cancer was “off the table.” Two doctors were wrong! Valerie has had multiple treatments: (1) Paclitaxel, Carboplatin, Avastin (Dropped from clinical trial after one treatment due to severe neuropathy and bone pain); (2) Carboplatin, Alimta, Avastin. After 4 rounds, her blood counts were too low to continue. While waiting for counts to rise, her oncologist recommended moving to a promising immunotherapy clinical trial); (3) EMD Serono anti-PD-L1 immunotherapy clinical trial, stable for 8 months; (4) Lilly clinical trial drug plus Ramucirumab for four treatments before progression; (5) newly launched targeted EGFR agent and Alimta in a novel timing combination (6) Gemzar. Valerie started a regimen on Opdivo, an immunotherapy and had her tumor tissue retested for more recently identified genomic markers.
Ralph, her husband and Valerie started the PurpleToes.org #purpletoes movement to get Valerie to smile, as well as to educate others about early detection of lung cancer and raise funds for the Addario Lung Cancer Foundation. To date the PurpleToes.org movement has collected over 800 sets of purple toes and raised more than $30K in support of ALCF (AKA GO2) while making Valerie smile, almost daily! My wonderful friend, Valerie passed away in November 2015, we will miss her terribly; may she rest in peace.
Lauren O’Connor, RN, BSN, Perioperative Nurse. In 2012, Lauren was diagnosed with stage IV, adenocarcinoma and was identified as being EGFR positive. She was initially treated with external beam radiation for bone metastases, which was then followed by maintenance treatment with Tarceva on which she continues to this day.
Dr. Melissa Lim, Pulmonologist. Dr. Lim is extremely knowledgeable in caring for lung cancer patients as well as patients with other lung maladies. She is the Medical Director and founder of Redwood Pulmonary Medical Associates and is board certified in internal medicine, pulmonary diseases, and sleep medicine. Dr. Lim earned her medical degree at the Ohio State University College of Medicine. She completed her internship and residency in internal medicine at Boston City Hospital and Boston University and went on to receive fellowships to continue her training at Johns Hopkins Hospitals, Baltimore, MD, and at UCSF. Dr. Lim has been recognized with numerous honors throughout her studies and professional practice.
Cathy Draper, RDH, MS, Dental Hygienist. Cathy received her Master's Degree in Dental Hygiene from the University of Michigan in 1978. She has worked in a general, cosmetic and implant dental practice in Mountain View, California for the past 28 years. She is a member of the adjunct faculty at Foothill College in Los Altos Hills and is the author of numerous continuing education articles for dental hygiene publications.
Neil Schiffman. In 2011, Neil was diagnosed at age 63 with stage IV non-small cell lung cancer. Molecular testing showed that he had the EGFR genetic marker and T790 mutation. His treatments included Tarceva, targeted and systemic chemotherapy, multiple cyberknife brain radio-surgeries, whole brain radiation therapy with hippocampus avoidance, and clinical trial participation. From the time he was diagnosed Neil talked to many patients and pursued helping others affected by the disease through his involvement with the Bonnie J. Addario Lung Cancer Foundation (ALCF). He became an outspoken patient/advocate sharing his personal story with diverse audiences through panel presentations at health/industry conferences, interviews, and serving on Stanford’s Clinical Trial and Patient Advisory Committees, as well as ALCF’s Patient Advisory Board. Prior to diagnosis Neil biked 100+ miles per week, was an Ironman triathlete and marathon runner, and had cycled across the U.S. in 30 days. Neil died in July 2015 and will be sorely missed. May he rest in peace.
Evy Schiffman, caregiver and wife of Neil Schiffman as well as Editor. Neil’s diagnosis of stage IV lung cancer in 2011 prompted Evy to retire so that she and Neil could spend more time together and she would have the flexibility to help Neil in whatever ways needed. Her professional life prior to retirement included 16 years as a high school English and American Studies teacher and 21 years as a marketing and communications director at an arts education non-profit. Starting in 2011 both Evy and Neil became active volunteers for the Bonnie J. Addario Lung Cancer Foundation (now GO2) where Evy uses her writing, editing and communication skills to write grants and publications and to advance ALCF’s marketing, education and advocacy initiatives. This rewarding work has kept her engaged and informed, enabling her to better support Neil by understanding his disease and to use her time to fight lung cancer for all patients.
And finally. . .
To the additional patients / survivors and other professionals who have contributed to this valuable resource with suggestions and ideas for assisting our fellow lung cancer patients:
To Evelyn (Evy) Schiffman, Editor and Advisor Extraordinaire, for her assistance as a second set of eyes and brain during the final stages of this project. Evy, you were a valuable and appreciated contributor to this labor of love.
To the GO2 Lung Cancer Foundation for all they do for patients, caregivers and families. By raising awareness, pursuing innovative research initiatives, and conducting patient education/support programs such as the “Living Room,” GO2 helps improve the quality of care for all those affected by lung cancer. GO2 supports lung cancer research by partnering and funding lung cancer specific projects increasing the availability of disease specific information to researchers.
Thank you all for “Paying It Forward.”
The advice outlined in this document is anecdotal in nature and is based upon my own and the above contributors personal and/or professional experiences. Strong common sense and a physician’s oversight should always be exercised when addressing side effects and symptoms.