As of June 2021, we have approximately 3000 members in over 70 countries and growing strong. Join us and learn how other members are living with lung cancer.
My cancer journey began with this one seemingly benign symptom. In the winter of 2017, at the age of 44, I developed a lingering cough that waxed and waned over a period of about six months. Everyone attributed this mysterious cough to frequent viral infections — after all, I am the mother of two young children. Not that unusual, right?
I consulted with a doctor who assured me that it was just a cold or allergies. I was prescribed over-the-counter medications and sent on my way. The cough did seem to go away at times, but it always came back. Even multiple courses of antibiotics didn’t keep it at bay for long. Still, I felt pretty good, overall. I had no other symptoms. And because the cough sometimes vanished, I didn’t suspect a serious health problem. I certainly didn’t suspect that there was a tumor lurking in my lung, waiting to wreak havoc on my life. Given my never-smoker status and relatively young age, lung cancer never crossed my mind.
But there was that one nagging symptom. One day I was providing anesthesia during surgery for one of my ear, nose, and throat colleagues. We spent the entire day working together in the operating room. Apparently, I coughed most of the day because my colleague asked about the cough. How long had I had it? Did I have any other symptoms? He ordered a chest x-ray on the spot. That was the day that changed my life forever. Like so many other cancer survivors, in a matter of moments, my life was divided into “Before and After.” It was the end of one life and the beginning of another.
The chest x-ray revealed a mass in my left lung. My colleague and I were both concerned. But at the same time, we were both confident that this mass wasn’t life-threatening. We were both doctors, after all. We knew that the odds were stacked against this mass being lung cancer. I mean, I was only 44 years old! There were other more likely diagnoses, weren’t there? I was healthy and active, I had just returned from a family ski trip… surely, I couldn’t have lung cancer! We agreed that it was most likely an infection that would clear with a course of antibiotics. He ordered a CAT scan immediately. The diagnosis? Metastatic EGFR-sensitizing non-small cell lung adenocarcinoma. Stage IV.
I’m a doctor. I knew what this diagnosis meant. I understood that, realistically, chronic disease and lifelong treatment would be the best-case scenario. I knew that I needed to find a doctor who was willing to do absolutely everything possible to prolong my survival and to treat this disease as aggressively as possible. And I needed to find him fast. I needed to be here for many years. I needed to raise my young children.
After six months of treatment with Tagrisso, all of my scans showed a significant reduction in tumor volume and activity. This, coupled with my otherwise good health, allowed me to take the next step: surgery to remove the residual lung tumor altogether.
Living with a terminal lung cancer diagnosis profoundly changes your life. It puts everything into perspective the way little else can. Did I mourn? Oh, yes. I swept through every possible stage of grief (shock, denial, guilt, anger, bargaining, and depression). Then I started working through my feelings. I’ve accepted my diagnosis now. And you know what? I’m actually hopeful about my future. I don’t take anything for granted. I’m alive.
The silver lining is that living with terminal lung cancer has forced me to stop and enjoy each moment and be grateful for every day that I’m here on earth with my husband and children. I’ve gotten better at living in the present. I am vividly aware of the joy in the little things. I’m more aware of everything around me. I focus on day-to-day living and living each day to its fullest. I spend more time with my family, especially my young children. I have significantly downsized my life and everything in it. I live a more simple and pure life, a life with less stuff and more joy.
My children Charlotte, age 9, and Jack, age 6, and my amazing husband Matt, are what keep me strong. I am fighting for as much time with them as possible. They are my world. But there are challenges. It is very difficult living your life with the knowledge that you have a terminal illness. And it’s difficult for your loved ones, as well. Trying to educate family and friends, while also staying strong for them on a daily basis can be hard at times. It definitely takes an emotional toll. And, of course, those of us living with terminal cancer must learn to coexist with that ever-present fear of progression.
Once I had exhausted all the stages of grief, I realized I had two choices: I could surrender and allow myself to keep spiraling down into a deep, dark hole of depression and hopelessness, or I could take positive, proactive steps that could hopefully make a difference for everyone who will suffer and die from this disease. I decided to make the unknown amount of time I have left as meaningful as possible. I’m hoping that sharing my story will help others who receive this devastating diagnosis feel that they are not alone.
If we want to be able to manage cancer the way we manage other unfortunate health conditions — as a chronic, treatable disease — I must do my part. I will continue to spread the word and help to educate the public about lung cancer and its misconceptions. As a doctor, and now a patient, it is my belief in science and modern medicine that gives me hope. I remain optimistic that the hard work of brilliant scientists and medical researchers will lead to the discovery of effective, long-lasting treatments that will allow all of us to live our lives for many years to come.
October 30, 2015 will forever be the day my world changed. That day I heard those words that no person wants to hear…“You have lung cancer.”
I kept questioning how this could happen to me. I was only 35; I had a husband and two young kids. I ate right, exercised regularly, and tried to take good care of myself. My first thought was, “I don’t smoke.” Then I wondered, “Did those occasional cigarettes in high school do this?” I soon came to learn that you don’t have to be a smoker to get lung cancer.
My immediate hope was that the cancer could be removed. But within 48 hours of diagnosis I saw a surgeon and was told that I was not a candidate for surgery. My cancer had metastasized to the surrounding lymph nodes and could not be removed without killing me. Instead of surgery, I was scheduled for 35 sessions of radiation and two rounds of cisplatin infusions. At the time, I believed that if the treatment was effective, surgery could be an option to remove the remaining cancer. After my initial chemo and radiation was complete, the tumor in my lung had shrunk considerably and lymph nodes appeared to be clear of cancer. Good news, right? Unfortunately, new scans showed that what had been an inconclusive spot on my liver had now grown into a tumor, and my official diagnosis was changed from stage 3b to stage 4.
The new tumor meant surgical treatment was no longer an option, and that medicine was my only hope. My oncologist recommended continuing with aggressive chemotherapy, but by this time, we had been able to research cancer treatments and thought there may be better options. I wasn’t satisfied with the doctor’s recommendation and sought a second opinion
We found a new oncologist that recommended we test my cancer for genetic mutations and scheduled a biopsy immediately. We soon received a call from him stating I had the EGFR mutation. I could hear the joy in his voice. Within a few days, I started to take Tarceva. Although there were side effects, my quality of life improved considerably compared with chemotherapy and was better than I would have ever thought possible.
I was able to stay on Tarceva for 26 months before scans revealed new growth in my left lung. At that point, I moved from Tarceva to Tagrisso and sought a second opinion from Dr. Niu at Banner MD Anderson in Gilbert, AZ. Dr. Niu felt a brain MRI should be done, which showed what appeared to be several lesions that the Tagrisso had already been effective in eliminating. I was thrilled that the Tagrisso appeared to be working. Unfortunately, after a few months, new CT scans showed that while the Tagrisso seemed to be effective on my brain metastases, I was experiencing new growth in my liver, lungs, and pleura.
The doctor then recommended a new biopsy to look for new genetic targets. While waiting for biopsy results, we continued Tagrisso, as it seemed to be effective against my brain mets, while concurrently starting another aggressive chemo regimen of carboplatin and Avastin.
Good News! The biopsy showed that I was a candidate for another targeted therapy drug, Xalkori (crizotinib). In February of 2019, I started the new treatment immediately while continuing with the Tagrisso. I was hopeful that I would see similar results to what we saw with Tarceva. Unfortunately, I did not react well to the Xalkori. While the new drug seemed to be effective for a short period of time, it wreaked so much havoc on my body that I had to stop it in April of 2019. In the short period I was on it, I was sick daily, lost 35 lbs., and lost a great deal of strength.
From there, treatment options were limited. Luckily, Dr. Niu found an opening in a clinical trial (LUD2014-012-VAC) that looked like a good option. It involved receiving 12 weekly injections of an experimental lung cancer vaccine, along with a regimen of chemotherapy. Unfortunately, after completing only 2 of the 6 rounds of injections, I started having breathing problems that forced me to be removed from the trial. I was sent directly to the ER, where it was discovered that my cancer had exploded with several new metastases throughout my chest. I also had multiple pulmonary emboli, as well as pneumonia and 1.5 liters of fluid in my lungs, and other complications.
I ended up being in the hospital for nine days in early June 2019 and came very close to the point of no return. While in the hospital, I went back on another chemo combo of atezolizumab, Avastin, paclitaxel, and carboplatin that seemed miraculous. Within a month, I was no longer dealing with the daily nausea and pain that had plagued me for months. I was feeling stronger and my appetite had returned.
In July, feeling like I had a new lease on life, we decided to take a family vacation and spend a week at the beach. While the week wasn’t overly active, we enjoyed a week of relaxation and family time that I wouldn’t have thought possible two months earlier.
July through September was amazing. Unfortunately, in October 2019 my pain and nausea returned, and it became clear that the latest regimen was no longer working.
Most recently, I had new CT and MRI scans. The CT showed considerable growth of the tumor in my liver, and the MRI showed a 3.5 cm tumor in the frontal lobe of my brain. The brain met is too large to radiate, but I will be meeting with a neurologist next week to discuss surgical options. At the same time, my doctor is looking for new options to treat my liver/chest as soon as the brain met is addressed.
At this point, I just try to take life one day at a time. Four years ago, the odds were against me making it this long, but I beat those odds. While the situation looks grim, I do my best to stay positive and thankful for the time with my family. I’m also thankful for resources like the EGFR Resistors community. I draw strength and encouragement from all of the amazing people in this group.
I don’t feel that cancer has changed me or my priorities, but it has made me appreciate the people in my life even more and the time I get to spend with them. The advice that I’d have for anyone that is new to this journey is to take control of your own care immediately. Read…read… read. Get second and third opinions and be your own advocate. I feel the only reason I’m still here is that while I trusted my doctors, I questioned everything and always look for new and better options.
I’m now 39 and have been living with stage 4 lung cancer for four years. I’m hoping that medicine advances faster than my tumors. When this journey started, I was 35 and balanced a full family life with a career as a community manager. We loved to travel, see concerts and shows, and spend time with friends. While it’s been more challenging since my diagnosis, we still try to see 1-2 good concerts/shows a year, and take every opportunity we have to travel and be with loved ones.
As much as I hate my cancer, it has taught me some valuable lessons. First, it taught me to slow down. I didn’t realize how much I was just trying to get through life, instead of actually living it. Ironically, I appreciate life more now than ever. Second, don’t sweat the small thing. Living with a terminal illness helps one understand what‘s really important in life.
I was diagnosed with EGFR lung cancer November 30, 2016. I was totally shocked, as naïvely I had thought that lung cancer was a smoker’s disease. My mother had suffered through lung cancer 16 years ago. But since she was a smoker, we all thought that that was the reason.
For a few years prior to diagnosis, I had a persistent postnasal drip. I had consulted with an ENT and an allergist to no avail. I still don’t know if that was an early symptom, but it led me to seek another consultation with a new doctor. I also had been experiencing some shorness of breathwhich I assumed was my “advancing age.”
My astute new doctor flipped through some old records and noticed a CT scan done 1-1/2 years prior at an ER visit after a bad bout of vertigo. That scan, unknown to me, showed some small lung nodules. No one ever told me. My doctor thought it was wise to do a new CT scan. I remember asking her if she was worried. She replied, “ No, just a reasonable follow up.”
I went to Disney World that Thanksgiving with my family and secretly worried about the upcoming CT scan. What if? As soon as I returned, I arranged for the chest CT. I had it in the morning and at 2 pm that day my doctor called me. “Hardye, you have a 4 cm mass in your right lower lobe.” “A what?“ I said. I asked her if she thought it was cancer, and she replied “probably.“ She had already arranged for me to see a pulmonologist the next morning so I called my husband, who is a physician and told him. I was terrified!
After the bronchoscopy and biopsy, I was told that I had involved lymph nodes but no further mets. I also had a PET scan and a brain MRI at that time and was then staged at 3A. After consulting with a few more doctors in the Chicago area, I chose chemotherapy and then hopefully a lobectomy if the main tumor had reduced enough in size. The four-month chemo combination of cisplatin/Alimta was very difficult for me. My wonderful friends and family helped me through that. In April, my scan showed enough reduction to do the surgery. The surgeons here in Chicago, however, were not willing to do an easier VAT surgery so we sought advice at Dana-Farber in Boston. We met a surgeon who felt I was a good candidate for that surgery and planned the surgery for May when they removed the tumor and one lobe.
Because of the lymph node involvement, they recommended radiation as a salvage measure. My doctors in Chicago concurred. I was very reluctant to do the radiation as I had already side effects from the lobectomy and chemo. After 37 radiation treatments, I was told to wait three months and get scanned again. In the meantime, I had some radiation pneumonitis from the treatments and also a moderate plural effusion from the surgery. However I was delighted that I could celebrate my 70th birthday with 30 friends. At that time I wasn’t sure I would see another one.
What I didn’t know is that the radiation oncologist had actually seen some progression in the other lung which they did not tell me about at the time of the radiation. I really regret that. They went ahead and did the radiation but I wish that I had saved that treatment for another time if needed.
At the follow up scan in November, we saw progression in the other lung. I flew back to Boston for another consult and it was recommended that I go on Tagrisso or Tarceva. Tagrisso had just been approved for first-line treatment in EGFR patients without T790M. I started on Tagrisso 80mg in February 2018 and remain on it today, 22 months of stability.
For the last three years, I have been able to continue to work part-time. I am a psychotherapist in private practice and find that my patients are some of my best supporters. I am also fortunate that I am from a medical family. Everyone has helped guide me in this journey. But I have become my own best advocate .Finding the EGFR Resisters last year has been a godsent. Finally, I feel that I have other smart, resourceful patients who do not hesitate to ask for advice and get to the bottom of their problems. I have also been a mentor for Imerman Angels and continue to try to raise money for lung cancer research. This is what I have always done for other world problems, but now I am doing it for myself.
Cancer has knocked me for a loop. I still suffer from the typical side effects of diarrhea, fatigue, some shortness of breath, etc., but I have been fortunate that I have been able to push through it so far. I had hopes to retire, travel, and enjoy many years of my grandchildren. I now have the same goals, but I have shortened the time frame.
I am so glad that we now have EGFR lung cancer on the map. Thanks to our fabulous co-founders, we are making our way to new research and hopefully new options. I remain hopeful for myself and others.
I have been the sole breadwinner of my family (three boys and my husband) for over 25 years with a very successful career in research and pharma biotech operations at the University of Texas, Johnson and Johnson Medical, and with the bulk of my career at Pfizer. My daily work life involved traveling all over the USA and abroad, managing and leading all manufacturing and finished drug product operations for cardiology, oncology, controlled substance, regulatory inspections, emergency supply of medically-necessary drug products to terminal patients, and management of patient adverse events.
I have never smoked and have never drunk often. And although my career has been very demanding and consisted of 80% business travel, I managed to follow a strict exercise schedule and holistic vegetarian diet.
Since I was a child, everybody regardless if they were my family, friend, or a complete stranger, attested to my very high energy and zest for dancing. I have always been this way, even as an adult.
I have also participated in regular, weekly, and monthly ball room dancing classes and shows with one of my twin boys and have attended my twice-a-week Latin Zumba class for years. As a family we enjoyed our vacations that mostly consisted of going to Ireland to visit my family and friends or another destination that we would choose.
And so during October of 2018, I had enjoyed a great week off with my boys gearing up for Halloween activities to celebrate the coming of fall. There was added excitement at work for achieving the first drug product launch in less than 13 months of my 17 months at my new job as director of global pharma with a private pharma in NY. I took this job after enjoying a wonderful career of 17 years as contract pharma/injectable operations site leader with Pfizer.
Personally, I had always struggled with depression and high anxiety due to high job demands and a lot of travel. As I think back, there were classic signs and symptoms of lung cancer—chronic stiffness and pain in my neck, shoulders, and lower back and frequent bouts with shortness of breath —sadly, all of these were attributed to my depression, anxiety, and osteoarthritis. This culminated into several visits to multiple specialists, different treatments and procedures including months of physical therapy per my GP’s advice. Unfortunately the relief was short-lived. Heating pads, portable electromagnetic pulse devices for pain management, anti-inflammatory and pain meds were my daily essentials at all times at home or traveling.
Right at the time I began my job search and interviews during the first week of November 2018 is when I suddenly developed a dry, relentless cough and severe shortness of breath that had now escalated to the point that I could hardly finish a sentence or walk a few feet before feeling dizzy. Instead I was prescribed antihistamines, cough drops, and more Xanax. I had diminishing appetite and lost 15 pounds by the end of the month.
Almost a year later in October 2019 I experienced a month of great anguish related to sudden changes in my company’s business goals that resulted in me losing my job in November 2019. Although I had three offers from major biotech companies by the end of the month, my hopes of getting a new job were not long lasting. On December 3, during my return from Boston after a successful interview, I found myself having a sudden shortness of breath, and then I passed out during my walk from one terminal to another.
The next day, I was admitted to the emergency room with a large pleural effusion. This was minutes before they extracted almost two liters of fluid from my left lung that had completely collapsed. I received a phone call from my desired pharma company in Chicago with a job offer as a senior director of pharma operations that included a full relocation package and a very attractive salary; and being of normally excellent health, a non-smoker, and expecting a diagnosis of bacterial or viral infection, I of course said, “Yes.”
But that all changed when I received my official diagnosis of stage 4 NSCLC on Dec. 12, 2018. Unfortunately this ruled out moving forward on any job offers. As a result, I am currently on social security disability and my husband can only find part-time or temporary work that barely pays for the grocery bill. I am mostly relying on my savings, and my brother has offered to pay for my cobra. Getting health insurance for my kids has been my utmost priority as I struggle with my own problems. There are no words to describe the terrible guilt and helplessness for not being able to take care of my kids. It’s very agonizing to see that I can no longer provide any type of assistance for my kids’ health and education. So paying for my insurance and that of our kids is my first taste of financial toxicity that often comes with a terminal illness and this does not account for co-pays and other costs of cancer.
My GP right away referred me to my very first oncologist—she had previously treated him for prostate cancer. Lucky for me, although she was a general oncologist, Dr. G was very much aware of the importance of biomarker testing prior to determining a suitable treatment plan. Since my biomarker results from the pleural fluid were taking too long, she ordered a blood biopsy that confirmed that my tumor had the EGFR+ 19 Del mutation.
The main tumor was on the top left lobe that had metastasized to the pleural lining and into the left pleural cavity, a couple of lymph nodes in my chest, and two in the upper left abdomen. I didn’t know what to say as I was still in a roller coaster of emotions and utter panic when my then oncologist Dr.G called about my PET and MRI and was very excited stating that I was very lucky that my cancer had not spread to any other organs or the brain. I started targeted therapy with Tagrisso within two weeks of my biomarker data. Thankfully, all of my symptoms and associated pain started to fade away within the first 72 hours and were completely gone after two weeks except for the cough that took another two weeks to dissipate.
But on a personal and emotional front, lung cancer hit hard. As a lifelong non-smoker living a very holistic and active lifestyle, I firmly believed that lung cancer was associated with smokers. As a result, I had a clinical nervous breakdown upon learning my initial diagnosis This is the moment that I believe I experienced an epic chaos around me. I had flashbacks to when I used to volunteer in the Peace Corps—it seemed like I was caught up in a war zone and I all I could hear was the cracking of bullets, hissing and snapping around me before it went all numb and eerily quiet. Pretty soon, another panic wave came in when I thought of my kids who still didn’t know. My then 12 year-old twins were in school and my then 20 year-old Nathan was at his science laboratory class at Rutgers.
The hardest part was telling my three boys and especially the oldest, Nathan—as he was preparing for his chemistry final the next day. My twin boys (Ronan & Spencer) acted stoic but I could see through their eyes and body language that they were trying hard to stay calm for me. Eventually my twins opened up about their concerns, and Spencer kept asking for assurance that there would be, in his words, “treatments to keep my alive and well forever.” At the time I didn’t know much about lung cancer, diagnostic testing, or treatments so I promised him that I would find out soon.
Nathan gave me a big hug and held me for a good 15 minutes, I could hear and feel his anguish as he quietly swallowed his tears and then asked, “What would you like me to do for you, Mom?” I told him to stay focused on his studies and more importantly that he should be prepared for his final test. I was happily surprised and really proud that the twins, on their own, sought information on lung cancer at the American Cancer Society page within two days of learning about my lung cancer.
I was over the moon at my very first post-treatment scan in February 2019. The main tumor shrank by greater than 70%, all lymph nodes and remaining plural effusion were completely resolved within the first eight weeks of treatment with Tagrisso. I remained stable and showed minor improvement at subsequent scans for the next three months.
But when it rains it pours…
My third scan in June 2019 revealed a progression after six months on Tagrisso. At this point in my journey, I transferred to Memorial Sloan Kettering for my care. My tissue biopsy performed on July 12 confirmed that my NSCLC had transformed into SCLC after only six months on my first-line treatment for NSCLC. My progression and diagnosis to SCLC was painfully scary. It has added utter uncertainty to my everyday life. The fact that SCLC treatment protocol has been virtually unchanged for more than 30 years only worsened my fear the night before the treatment because I felt that if this didn’t work, then there would be nothing else.
Soon after learning of my transformation to SCLC, I called my brother in Ireland, and texted Erin Sarauer and then later, talked for a whole hour by phone. I met Erin at Hope Summit and since then, we became fast friends. She was also one of my lung cancer Facebook friends who also had her NSCLC transform into SCLC a few months prior to my progression. It was devastating beyond words over the sudden passing of Erin in October 2019 and during my chemo cycles. For a while, I didn’t go to the Facebook page as often, fearing having to hear about more fellow warriors passing, which has become a common occurrence.
Later CT and MRI confirmed the progression to be limited to my left lung and two nodules in my lower right lobe. On July 18, I started my first chemo cycle (carboplatin + etoposide) but also remained on Tagrisso with the exception of one week during the first chemo cycle.
My first and second scans showed great response to chemo with more than 50% shrinkage of the largest nodule and considerable shrinkage of the other. In November 2019, I successfully completed all six chemo cycles and the scan scored as stable. I’m already feeling the jitters of scan anxiety for my next scan at the end of January 2020. There is no maintenance for SCLC but I continue to take my Tagrisso for the NSCLC component of my cancer. To this day I still fear sudden decline and death if my cancer relapses. I also have frequent anxiety attacks throughout the day and am currently on three different kinds of anti-anxiety and anti-depression medications.
When the sun started rising…
The day after learning of my diagnosis, I figured that there had to be somebody who could help me understand my cancer and what it means for me. So after Googling “lung cancer,” I came across the LCFA (Lung Cancer Foundation of America) site. I consider this the beginning of my empowerment as a lung cancer patient. The very first name I found was Cindy Iker, operations manager at LCFA in CA. I called her right away. I didn’t think of the time difference, but Cindy answered the phone while she was still in the middle of getting up in the morning for work,and two hours later, we were still on the call.
I couldn’t let go of the phone as she was my first lifeline, and I couldn’t take the chance to lose her. Again, luck was on my side: Cindy was my first ray of sunshine that broke through the darkness. Besides calming my fears and concerns, she gave me a contact list of lung cancer advocates in the NY and NJ region, names of thoracic oncologists, and the center of excellence in the tristate area. She also provided a link within the LCFA site for patients’ stories, and most of them were also lung cancer advocates. This is when I found out about Ivy Elkins, Juanita Segura, and Jill Feldman.
I called Cindy again and wanted to get in touch with all or any of the three as soon as possible. Within days and before my first appointment with my oncologist, I received a call from Juanita. I was so excited and relieved when she introduced herself. I don’t remember exactly what I said but it probably wasn’t very coherent as I remember crying most of the time and expressing my gratitude for how happy I was to be in touch with her. It was Juanita who provided my first lesson on what to expect when you are first diagnosed with lung cancer. It was then that I learned of NGS, the importance of biomarker testing, how to find a center of excellence of lung cancer in my area, Lungevity, and the EGFR Resisters Facebook group. Thanks to Juanita, I prepared a list of questions for my first appointment with my oncologist and applied for the grant to attend my first Hope Summit in D.C. in April 2019. Although newly diagnosed, right away I felt at home, and for the first time, I had the feeling of real hope and empowerment. I met Ivey Elkins, who also helped me find my current thoracic oncologist, Dr. Helena Yu.
The second most important step I took was joining the EGFR Resisters group. I honestly believe being a member of the EGFR family has been my most reliable lifeline since I started my lung cancer journey. It offers anything and everything to do with lung cancer and the life of one living with lung cancer. Checking Facebook is a part of my daily routine except for certain days or occasions that I can’t be around my computer. Three months after starting on my first-line treatment, I learned that about 60% of NSCLC are non-smokers. It wasn’t my oncologist but the EGFR Resisters Group which gave me most of my knowledge on lung cancer.
I think I have a much better understanding of what it means to “take one day at a time.” I now enjoy the very simple things like the morning sun, and I cherish simple walks with my kids like the luxury vacations we used to have. I really hope my kids and my husband would make an effort to spend more time with me and be creative to find ways to make memories rather than to still be fully immersed in their favourite past times.
I am determined to find my purpose as an advocate for lung cancer as soon as soon as the opportunity presents itself. I do everything to not think about the future as it sparks a lot of anxiety and fear. I do however imagine being there when my twins graduate high school in five years and when the oldest graduates college in six months.
I continue to maintain my healthy eating and exercise, but all is to a limited extent considering my current situation. During my chemo last September, I started attending a one-hour workout class five days a week at Long Valley Jazzercise and have continued to do so. I wish there was a lung cancer support group in my immediate area, however I enjoy my weekly cancer support meeting for Advanced Cancers at Cancer Support Community. https://www.cancersupportcnj.org/
If you ask me, I still dream of the day when I will have the opportunity or resources to enjoy my Latin Zumba or Latin dance again. I am a true believer that dance is my spiritual medicine. Most of my friends whom I thought were my close and best friends have stopped interacting, and some haven’t made their first call after learning of my diagnosis. I am getting better with time to let go of my friends who simply call in a blue moon draining me of my rest time to not even ask how I’m doing. My only sister-in-law, my husband’s sister, whom I used to have a good relationship with hasn’t even decided to call, let alone text, to see how our family’s doing since she heard about my diagnosis a year ago.
The only thing I am thinking and planning on preparing for is to set up my will and set aside time to prepare for my funeral expenses but can’t get the courage to touch on this subject at this time. However, maybe once I am stable I will feel more in control to discuss this with my family.
In May, 2015, my husband decided to take an early retirement, and we relocated from Tennessee to Colorado to be near our son and family. At the time, I was already being treated for a bone marrow condition, myelofibrosis, but doing well on medication.
After our move, I took on a woodworking project in our home in early 2016. Before long, I developed a great deal of pain in my hip, as well as my sternum area. I assumed this was all just aggravation of a prior sciatic nerve issue and putting strain on my sternum area from the operation of saws and nail guns. I recall going to bed in near tears due to the pain that OTC meds were not touching. I got in to see my primary care provider who suggested physical therapy as a start. As I proceeded with PT, I also made an appointment, on my own, with an orthopedic specialist. Unfortunately this specialist only did a couple x-rays in his office and told me there was no cancer involved. On return to PT, the therapist suggested an ortho specialist she knew of and I was able to get an appointment right away. I will forever be grateful to this specialist! Seeing my history of breast cancer from 1994, he immediately ordered CT scans (and fought with my insurance to get with/without contrast). In just a few days, I had those scans completed and received a call within minutes of leaving the radiology lab telling me that there was indeed something of question on my scans.
The initial scans led to additional ones and a referral to UC Health Anschutz Cancer Center in Denver where I was already under the care of Dr. Daniel Pollyea, hematologist, for my bone marrow disorder. He in turn ordered a bone biopsy in order to get a definitive diagnosis. Unfortunately, my diagnosis came back as stage IV lung cancer. I recall that day vividly as I was babysitting my grandson when the call came. I cannot express how devastated I felt at that point!! I was 64 years of age, had never smoked nor been around anyone who did in my lifetime. My breast cancer had been diagnosed very early, stage I, and with surgical treatment, I have never had a recurrence.
With Dr. Pollyea’s help I was referred to and got an appointment right away with Dr. Robert Doebele, lung cancer specialist at Anschutz. Mutation testing was completed, and I was found to be EFGR+, Exon 19 deletion. So in May of 2016 I began daily treatment with Tarceva. The quick relief from pain in my hip and sternum was near miraculous. I did very well on Tarceva, and despite some unpleasant side effects, I felt great! Then, 11 months later, I had progression, albeit minimal, and was limited to the three initial locations: lung, sternum, and pelvic bone. Mutation testing was repeated but did not show a new mutation. I was sent for targeted radiation treatments over about 12 days, and mutation testing via liquid biopsy was repeated. The thought was that perhaps the radiation had caused enough cancer cells to die off and a new mutation would show up in my blood work. And, it worked!! I was found to indeed have T790M which meant I could start Tagrisso. This was the best news!!
Currently, I have been on Tagrisso for nearly three years, holding back cancer progression! My lung cancer team is amazing……watching over blood work, scans, how I’m feeling, and being very responsive to my questions even outside of office visits. Side effects from Tagrisso have been very tolerable. Honestly, I’m feeling very well and there’s no slowing of my activities. Treatment for the lung cancer, along with the bone marrow disorder, has been a balancing act for my doctors….keeping blood counts decent as medication for each issue affects them.
Some people may read this story as a lot of coincidences; however, I nor my family, see it that way. We have a great deal of faith in God. I’ve been covered with prayer by my family and so many friends through this journey thus far.
My hobbies in Colorado have expanded from gardening, home décor, and service work at my church to one of the greatest gifts of all, helping babysit my two grandsons, ages 3 and 6, and watching them grow. God has been faithful to provide help, and I know He is ahead of my story whatever it brings and that gives me hope! Yes, just as anyone else with a stage IV cancer diagnosis, I wonder how much time I have left. I especially think about this since I am fighting a second diagnosis as well. I recommend all survivors and family of survivors the following:
Do NOT hesitate to talk about the issue
Don’t allow the survivor to feel alone in the battle
Advocate for them and be knowledgeable of their disease to help in this battle
There are now so many resources online to help us in this fight. I have met so many other survivors via the EGFR Resisters facebook group and website. We encourage one another and share very helpful information on treatments, dealing with side effects, and research. I encourage any EGFR patient to connect with them.
The research that has happened in these past few years is amazing; however, the disease is still taking so many lives. It is on the increase among never-smokers and women both younger and older. Early screening is vital in order to catch lung cancer at an early, curable stage. If you have a lingering lung issue, ask for the screening CT. The second leading cause of lung cancer is radon in our homes, and I encourage everyone to have your homes tested for radon and mitigate as needed.
At the age of 54 I started to worry about the crepey skin on my neck. I’d bought a special moisturizer and slathered it on my face and neck hoping to slow down the aging process. During the first week of June of 2013 I felt a lump above my right clavicle during my morning routine. It is amazing just how fast you can get an appointment with your PCP when you call and say, “I found a lump”. That was the beginning of my odyssey with Stage IV non-small cell lung cancer.
My PCP ordered an ultrasound of the neck which showed an enlarged and solid lymph node. That lead to the chest CT and an outpatient biopsy procedure and a diagnosis within four weeks. The surgeon broke the news of adenocarcinoma on July 5, 2013. He’d also scheduled an appointment with an oncologist at the local hospital for just three hours later.
The oncologist was a nice *young* doctor who explained that this was lung cancer and that the tissue was being studied for mutations that would help determine the course of treatment. I should schedule a PET/CT and an MRI of the brain with a follow up appointment in 2 weeks to review results. My husband and I were shocked and overwhelmed but picked up the piles of paper and headed home.
I’d called my PCP after we saw the surgeon and he told us to come in as the last appointment of the day so that we could talk. Our PCP is wonderful, and we were grateful for the opportunity to talk with him about what was going on and what options were available. We talked about getting a second opinion and going to an academic medical center that had NCI designation. That was an easy decision – the good doctor graduated from the same large academic medical center where I work. His comment was “go where the scientists are.”
We kept the follow up appointment with the local onc. He showed us the lab results and there was a smiley face at the top – I had “lucked out” with an EGFR mutation – deletion in exon 19. I would be able to take a targeted medication. I would have been his first patient! He was disappointed that I was going elsewhere for treatment.
Our appointment with the *big city* oncologist was a few days later. The fellow that met with us first reviewed the results of the scans. There were many, many nodules in both lungs, supraclavicular lymph nodes and a spot on the sacrum. She also said, “there’s nothing in your head.” That is still my favorite diagnostic description ever.
My oncologist came in after that. She reviewed the films, told us about how the mutation worked and told us that there was a targeted medication that would work for me. It was a lot of information and we were a bit swamped. The last thing the onc said was “Our goal is to treat this like any other chronic condition for the long term. We’ll do beautiful things together.”
She placed an order for Tarceva and within two weeks I’d started my wonder drug. It did make me wonder what was coming next in the way of side effects. But we came to terms and I learned to manage the side effects. Tarceva allowed me to enjoy two years of living a very good life.
Progression is an inevitability in our world, and I am not immune. After Tarceva failed me I used Afatinib for seven months as a bridge until Tagrisso got FDA approval. Tagrisso served me well for two and a half years. September of this year brought the realization that cancer had again reared its ugly head.
A biopsy showed that I’d acquired the C797S mutation. I’ve been fortunate that there is a clinical trial for an infused, bi-specific antibody that targets certain EGFR and cMet expressions. I’m through Cycle 3 of JNJ-61186372. The first set of scans showed improvement. I’m due for a second set this week.
I feel privileged to participate in a clinical trial. There are many people who did the same for Tarceva, Afatinib, Iressa, Tagrisso, and even the Clovis trial that have made our survival possible. I hope that this infused drug will be successful and provide another weapon in the arsenal in treating lung cancer.
I’ve been blessed with excellent doctors throughout out. From my PCP that pushed me at the start and supports me now to my oncology teams at two cancer centers, I have been treated by scary smart, caring and genuine advocates who listen and answer my questions in words that I understand. They share information and inspire hope – even when it feels like it is in short supply. I cannot express how a good and open relationship with my care team is. We are partners along with my husband on this road.
I found the Inspire website early on as a result of a search for “Tarceva Rash”. I’ve been an active Tarceva and Tagrisso Diva since August of 2013. It is a source of tremendous support, friendships, connections, information, inspiration and comfort. One of my fellow Divas directed me to the EGFR Resisters site. I find the information interesting and valuable. I look forward to newsletters and learning more about this community.
Lung cancer is a marathon, not a sprint. I would encourage those new to this awful world to take things one day at a time. Don’t hit the panic button too quickly. Trust your care team. Surround yourself with people that genuinely love and care for you. Look at cancer as a chronic disease and not a death sentence. Staying positive is a challenge, but I enjoy laughing more than crying – it just takes less energy and feels better. Don’t be afraid to get counseling or help if you’re having challenges. Find a support group either in person or on line because as much as the people around you are sympathetic, they just don’t completely understand.
My diagnosis has forced changes in my life. I’ve learned to know my limits – and what happens when I don’t listen to my body. I’ve learned to prioritize and to let things go. I’ve learned what really matters to me. There are times when I feel like “I’ve got this” and times when it feels like things are falling apart. I count on my husband and sister, as well as the rest of my family; on good friends – in person and on line; on my care team. I’m surrounded by wonderful people and couldn’t do this without my husband, who is my knight in shining armor. He is a saint and my rock.
I’ve been fortunate to feeling well enough to work. I love what I do and look forward to being able to contribute for as long as I can. Or until retirement, whichever comes first! My passion is cooking. Creating something from many different parts is satisfying and relaxing. My backyard bird feeders are a source of delight and calm. Nothing beats a good British mystery to keep my little gray cells working. And there is no place better to be than the Jersey Shore.
We continue to live our lives. We’re coming up on our celebrating our sixth post-diagnosis wedding anniversary. We’ve seen one niece and one nephew have gotten married. We’ve added four grandnieces and one grandnephew to the family. We’ve traveled to New England, Canada, Bermuda, California, New York City, Virginia and our beloved Jersey Shore. My darling husband and I have lived and loved and cried and laughed more intensely since my diagnosis. But that is what keep us going. And we plan to do that for a long, long time.
I was first diagnosed with suspected stage I NSCLC in April 2013 at age 46. In hindsight, symptoms had been smoldering for several years but I put them down to other causes. For several winters, I noticed that I was getting short of breath more easily with activities but having had asthma since my teens, I simply wrote it off as “my asthma is getting worse as I get older.” Even as a primary care physician, I was caught up in thinking that only smokers developed lung cancer, and therefore it wasn’t a consideration for me. I had developed a cough in January 2013 which was worse at night. Again, I attributed it to asthma. Over the next month or so, I developed a very salty-tasting sputum with the cough. Something in the back of my mind from medical school told me that was significant, but I couldn’t recall why.
At the time I cared for hospital inpatients as well as my outpatient practice, so I tended to leave my health concerns secondary to those of my patients. My wife, an ER nurse, listened with a stethoscope one day in late February and told me my breath sounds were abnormal at the base of my right lung. I was on call that weekend for hospital inpatient coverage and I developed a high fever. I called my family doctor, a close friend of mine, and asked for a chest x-ray. It showed a right lower lobe infiltrate, probably pneumonia. I felt sick enough that for the first time in 18 years, I called a colleague and asked him to complete my call rotation. By the next day, I felt well and the fever was gone. I probably would not have gotten things checked again except that the following weekend I developed severe chills. A repeat chest x-ray showed the pneumonia had not improved despite the fact that I had felt better for the entire week in between. We did another course of antibiotics and then repeated the chest x-ray. The infiltrate was still there so it was onto a CT scan. This did not show a solid mass but pretty well the entire right lower lobe looking like an infiltrate/infection. But now I felt well. I scheduled an appointment with a local pulmonologist I trusted for follow-up.
Cancer was still the last thing on my mind. I was more suspicious that I probably had a fungal infection. I still suspected my cancer risk was extremely low. When I saw the pulmonologist and told him about the extremely salty sputum, he immediately said that was a hallmark for bronchioloalveolar cell (BAC), a subtype of non-small cell adenocarcinoma of the lung. That was at least reassuring because BAC has a better prognosis. Interestingly, my PET scan barely lit up. It only showed a right lower lobe abnormality, no other involvement. (The fact that the PET scan doesn’t show much uptake from my cancer does limit my ability to follow it with PETs now, however.)
I met with a thoracic surgeon at a major national hospital who also had a fellowship in thoracic oncology. I underwent mediastinoscopy and my nodes were negative so it was recommended I undergo a right lower lobectomy. The hope was that would be curative for my suspected stage I disease. He did have me see a thoracic oncologist at his institution as well. When I asked about five-year prognosis, he very tersely said “50-50” (for those thinking about entering the medical field, bedside manner should be at least 70% of the quality of the care you provide.) Subsequently on May 22, 2013, my wedding anniversary, I underwent a right lower lobectomy. Intraoperative pathology showed there was also a tumor in the middle lobe so that was removed as well. So I came out of the OR now knowing that my cancer was stage III. The final pathology showed it was a mixed adenocarcinoma but had some bronchioloalveolar cell features, and it was EGFR exon 19 deletion mutation positive.
I initially followed with my local oncologist, an exceptionally skilled and caring individual. He did recommend that I have Foundation One genomic testing done on my tumor, and he arranged this to check for other DNA mutations. There was only one other mutation which was something rare that’s not currently targetable. At that time, the protocols called for chemotherapy so I started treatment with Cisplatin and Alimta about four weeks after surgery. I return to work in my primary care practice part-time about eight weeks after surgery while still undergoing chemotherapy.
Needless to say, it was a shock to understand I now had a stage III cancer. My two kids were young, ages 12 and 9 at that time. Recognizing that statistics were not in my favor, my goal was to see them both finish middle school; anything else would be considered a blessing. Subsequently, as I completed chemotherapy, my attitude changed. I decided I was going to be a long-term survivor. I was not going to let cancer rule my life. That realization hit me one day at the supermarket. I looked in the next checkout line and there was a young guy in his early 20s. I realized that he could potentially walk into the parking lot and get hit by a car and be killed, but he was not spending his days thinking “What if I get hit by a car today? I had to take the same attitude. There was no point thinking about the “What if the cancer comes back?” Doing that would just making me miserable and not change anything.
There was no evidence of any recurrence on my initial scans after chemotherapy. I returned to work full-time. By the following spring, there were a number of worrisome signs of small nodules in both lungs on my follow-up scans. Since my PET scans do not light up, and the nodules were too small to biopsy, we opted for surveillance and I had a repeat CT scan in 3 months. This showed further increase in size and number of the nodules. They were still scattered and difficult to biopsy. I underwent bronchoscopy. No single nodule was large enough to get a good sample from accurately, and all 18 random samples taken were negative for cancer. After discussion, it was felt that possibly this could also be chemotherapy-related changes or even a low-grade infectious process. I went on a month of antibiotics and prednisone but the repeat scan a month later still showed the changes. My oncologist had been consulting with a thoracic oncologist at another large cancer institute. This man was the most knowledgeable, caring individual I have probably ever met in medicine. He suggested that I start Tarceva and said he was pretty certain that everything would be gone on my follow-up CT in one month. I started that in late August 2014. He was right; my follow-up CT was clean. What was left was some very small scattered residual nodules.
The thoracic oncologist had also recently returned from a conference showing good results with Avastin (based on a study in Japan) in exon 19 deletion EGFR non-small cell lung cancer. He got my insurance to cover it even though it was not approved for lung cancer at that time, and I was on that for a year.
Tarceva came with its own set of problems however. I have had reflux all of my life and required medication treatment for years. I couldn’t take any of my usual reflux medicines with Tarceva since its absorption was considered acid-dependent. The only way I could control the reflux with mild medications was with a very restrictive diet. I basically ate shrimp, white fish, and Ramen noodles for months. No caffeine. I lost 25 pounds in eight weeks. I would not recommend that weight loss diet to anybody. An exciting thing in November of that year was that I discovered the Beards for Hope campaign by Free to Breathe. With my horribly sparse malnutrition beard, we raised $19,000 for lung cancer research from the kind people in my small town of about 10,000, along with friends and family in Canada. That was a very exciting and telling moment for me. People do care.
I subsequently switched to Gilotrif in spring of 2015 as I could take my acid lowering reflux medicine with this. I have remained on it ever since. And unfortunately, I gained back most of the weight I had lost. This made my oncologist a whole lot happier than it made me.
I manage my life with cancer by keeping myself active. My family is my number one priority. I cherish every moment I have with my wife and kids. Work remains a release for me but also is a stressor as I see my own patients dealing with cancer of various types. Fortunately, I can better relate to their situations since I have been through it myself. Each of my patients that develops any sort of cancer gets my cell phone number, and I make myself available to them 24 hours a day if needed to answer any questions or just talk if they have concerns. Unfortunately, in my line of work, I deal with survivor’s guilt quite a bit when I see patients pass away that were diagnosed long after I was or were expected to have a better cancer prognosis than mine.
I keep active walking the dog, skiing when the Midwest winters allow, enjoying the outdoors, and reading. I have had some exciting travel. I have made it beyond the middle-school wish and will see my oldest go off to college later this year. I have realized not to let the little things in life bother me and have found a new spirituality. I am excited by the research going on presently in lung cancer and generally feel hopeful for the future.
Fortunately, I have a good relationship with my medical team. The oncologists I see are ones I also refer patients to myself. I generally see the thoracic oncologist at the large national center yearly and follow with my local oncologist in the meantime. Unfortunately, because I live in a small area, I have gone through a few local oncologists because of them moving away. I realize all the emphasis now is on following at a large comprehensive cancer center. While this is an important aspect of treatment, not everybody has the ability to go to such centers regularly however. From my experience, I believe you can do well if your oncologist locally is willing to partner with a subspecialist they know at a large center and keep in touch with them about your case on a regular basis. I would highly recommend that the thoracic oncologist at least be regularly advising your team. That way, you get the specialized information, but can do your care close to home, which can be important both financially and for you and your family physically. My radiologist and I have a love-hate relationship. I generally walk right out of my CT scan since I know him from work and walk straight into his room and say “okay let’s look at it.” He is not a proponent of lung cancer CT screening, however, so we have butted heads on that a number of times.
Fortunately, knowing a lot of my local oncologists personally, I am able to get some of the latest news on research from them. I also get a lot of it in my emails from medical journals etc. A lot of the best information I get, however, is from social media from some of the fantastic patient advocates out there, particularly many involved in this group as they post recent research findings and links to studies frequently.
I have only recently become involved with the EGFR Resisters community. I’m always astounded by the knowledge and drive of the founders and am very proud of the advocacy this group has shown. It is wonderful to see the support we give each other and to see the stories of the long-term survivors involved. It has been a great opportunity to have met some of you personally. Knowing that people beat the statistical odds is important. Cancer is all about HOPE.
Cancer has changed my life. I try to see the positive in everything and not focus on the negative. I have a new priority of pushing lung cancer screening to the forefront of primary care medicine cancer screening. Early detection will not just help people live by opening up treatment at an earlier stage, but well increase the number of lung cancer survivors exponentially, and it is survivors that drive the national agenda to increase research funding and awareness. Right now we do not have a large enough survivor pool compared to other cancers. We can change that. I feel a new pull towards advocacy and education. I was honored to speak at the Lungevity Hope Summit Columbus last fall and am looking forward to being on the HOPE panel at the Washington DC summit this year.
I encourage all other lung cancer patients to stay positive and fight. Don’t get caught up in statistics. Most of the statistics about survival are out-of-date and did not exclude cancer patients with numerous other health problems or extremely elderly age, of which lung cancer has a large number. If you look at the true survival statistics with these numbers excluded, survival with lung cancer as a chronic disease is a real possibility. Live life and love life.
Shock, disbelief and fear were the emotions I felt when I was first diagnosed with NSCLC. In October of 2016, I had a cough and laryngitis. At this time, I was a college professor, and I was finding it difficult to teach with laryngitis. For the next nine months, I saw several doctors, and they all gave me the same diagnosis; bronchitis with laryngitis. It wasn’t until June of 2017 that my nodule was found by a nurse practitioner, her first day on the job, who asked me if anyone had taken a chest x-ray.The medical professionals I had seen said it wasn’t necessary because I did not smoke. She took one anyway, and a 1.4 cm nodule was found! I am forever grateful to her!
Throughout the summer, I began researching lung cancer and my main finding was to go to a research/cancer facility, so I made an appointment with such a place. On August 20, 2017, at the age of 61, I was given the official diagnosis that I had NSCLC, an adenocarcinoma. An oncologist who specialized in lung cancer told us I was stage 1. His recommendation was that I have a left lower lobectomy. I was informed that the 1.4 cm nodule and three lymph nodes lit up on the PET scan, but the lymph nodes had a lower uptake. My oncologist and thoracic surgeon both thought the 3 lymph nodes were a fungus that is found in the Midwest. They were the experts, so I didn’t question their decisions. I had surgery to remove the lower left lobe of my lung and a mediastinoscopy for the lymph nodes. We were informed that the lower left lobe was not removed because the lymph nodes were cancerous. I now had stage 3A lung cancer, and the recommendation was for 6 consecutive weeks of chemotherapy with 30 consecutive days of radiation.
And so it began. The cancer center was located 2 hours from our home, so my husband and I stayed in a long-term hotel for 6 weeks. I had weekly chemo treatments of carbo/taxil and daily radiation treatments to my lung. The chemo/radiation treatments made me very ill. Because of the radiation treatments to my mediastinal area, I could barely swallow. I was given Magic Mouthwash (lidocaine) to swallow before I could eat, and I had a fentanyl patch for the pain; I lost 30 pounds. The tumor and lymph nodes shrunk. My prognosis was promising, and I was told I was on the curative path.
I read the Pacifica Trial because my oncologist wanted me to begin durvalumab which had just been approved by the FDA for stage 3 lung cancer. Also, I was reading about liquid biopsies and the importance of testing your tissue for mutations. I had only connected with three other lung cancer survivors in my area and one of them had the ALK mutation. I began to wonder if I had a mutation, and I asked my oncologist if he would give me a liquid biopsy. He said insurance would not pay for testing for a mutation unless the patient was stage 4. We told him we would pay for the test, but he said it wasn’t necessary. I had shared with my oncologist that I had pain in my sacrum. Because it did not show up on the PET scan, he said it wasn’t cancer. Previously, I had been diagnosed with degenerative disc disease in my neck and back. My pain management doctor ordered an MRI, and it showed two new tumors on my sacrum. My oncologist discontinued the durvalumab infusions. Now I had stage 4 lung cancer.
In November 2017, everything was clear and then in January 2018 I had multiple bone mets. I thought to myself: How did this happen?! My oncologist ordered a liquid biopsy, and I told my oncologist that maybe I had the EGFR mutation, and could we test my tissue? He said the liquid biopsy would be sufficient, and I should get off the Internet. This did not sit well with me. I explained that I was reading research, but I felt that he was not listening to me.
Subsequently we made a long-distance trip to a renowned research/cancer institute for a second opinion. I shared with the oncologist a research study that I found that led me to think I could have the EGFR mutation. My adenocarcinoma had lepidic and focal micropapillary growth pattern, I was a female, and I never smoked. He said that I didn’t have the EGFR mutation because only 10% of lung cancer patients had that mutation. How would he know this since I had not had any genomic testing of my blood or tissue? I left there feeling depressed.
The results of my liquid biopsy revealed that I did have the EGFR mutation but I also had the HER2 mutation. I felt vindicated! But what in the world is the HER2 mutation? I was having pain in my face, so I was admitted to the hospital where I learned that the cancer had metastasized to my brain. In two weeks, we were supposed to take a family trip to Disney World. My husband asked the doctor if we would be able to go, and he said no. My husband then asked if we postponed the trip would I be able to go later? He shook his head no. His body language told me all I needed to know. He did not think I would get well or survive this progression of disease. While I was in the hospital, I met with a neurosurgeon to discuss having gamma knife treatments to the spots on my brain. The neurosurgeon explained to me that they didn’t know which mutation, EGFR or the HER2 mutation was the driver mutation. Now I had more information to research!
One of the worst experiences in my lung cancer journey was the gamma knife procedure! The neurosurgeon prepared me for the procedure by numbing my skull and screwing the frame into my head. Two MRIs and six hours later, the doctor who was going to perform the procedure told us that he would not do the procedure because I had 12 brain mets. Meanwhile, I had the frame screwed on my head and I was wearing a neck brace due to the mets. He was standing on my left, and I could not turn my head. He said, “Mrs. Paulson look at me when I am talking to you.” Talk about a poor bedside manner! As the nurses were removing the frame from my head, I asked the nurses if they had ever had a patient prepped for gamma knife only to not receive the treatment. They both told me they had never seen this happen.
I was given Afatinib 40 mg and started on Xgeva injections. I was also told that I needed whole brain radiation therapy (WBRT). I then got two second opinions from radiation oncologists, and they both said I only had 10 brain mets not 12. The brain mets were small 1mm to 5mm and were asymptomatic. They both felt I had time to see if Afatinib would cross the blood brain barrier (BBB) before I had WBRT. I also got a second opinion from two more oncologists and neither one of them had heard of Afatinib. Sad but true! During this time, my son found the Lungevity EGFR Facebook page. This was so much help! I could ask people what they were doing for their EGFR/HER2 diagnosis! Connecting with others in the EGFR community was a God send!
I began having adverse effects on Afatinib 40, so my oncologist lowered my dosage to 30 but I still ended up in the hospital. My dosage was then lowered to 20, I felt better but now had 12-15 brain mets. The FDA had just approved Tagrisso for patients who did not have the T790M mutation. Many in our EGFR community encouraged me to talk to my oncologist about trying Tagrisso. Because my oncologist was sure I had the HER2 mutation he would not put me on Tagrisso. I consulted a lung cancer oncologist who was triple-board certified in oncology, hematology, and immunotherapy. He said it was statistically improbable that I would have both of those mutations at the same time, and he suggested I get on Tagrisso immediately. A week later my oncologist decided to test my tissue. After three weeks, my oncologist said the testing facility had tested for the wrong HER2, so he sent my tissue back to be retested. Once again, he encouraged me to have WBRT. Three weeks later he called, and the tissue sample only showed the EGFR mutation, so he said I could begin Tagrisso. Thirty days later my brain MRI showed all brain mets were gone! I was elated but my oncologist told me not to celebrate until I had been on Tagrisso one year. Through the EGFR Resistors Facebook page, I found a new oncologist who is presently treating me. My new oncologist understands my need to be involved in my treatment, and she listens to me. She celebrates with me when I am stable!
This spring I returned to my second opinion radiation oncologist and took my most recent brain MRI with me to the appointment. After spending 10-15 minutes comparing my two MRIs, he looked at me and asked me, “Do you know how many times I have seen this in my 30 years of practice? I shook my head no. He put up his fingers in a zero. He told me he had never seen all brain mets eliminated from a medication.
None of us are guaranteed tomorrow. I believe each day I am alive is a gift from God and I believe in the power of prayer. Thanks to God, my family, and Tagrisso my life is good again! It is a new normal but one where I am grateful for each day! I have been able to participate in numerous milestones! My husband and I celebrated our 45th wedding anniversary, I retired form my teaching job as a university professor, I was there for the birth of our grandson, and I was able to celebrate another Christmas and birthday with my family! My husband and I spent 30 days this winter traveling! We went to Disney World with our family; one year from the time we cancelled last year’s trip. We went with friends to spring training at Mesa, Arizona (I am a Cubs fan!), to Cocoa Beach to babysit three of our grandchildren, and just returned from Jacksonville, Florida where we visited friends! We are enjoying life!
What’s next? In my past life, I was a workaholic. Now I am working at developing a more balanced lifestyle. I walk 30 minutes daily and take a yoga class three times a week. I eat more fruits and vegetables, drink more water, and get more sleep. I write in my gratitude journal and read a daily devotional. I practice positive affirmations and play with my grandchildren. When fear tries to creep in, I focus on my mantra: Joy over Fear! I am now attending conferences to learn more about lung cancer. I definitely think it is important to be your own advocate and to help others whenever you can. I am so grateful for the people who reached out to me during the low part of my lung cancer journey. I am looking forward to attending my first Lungevity International Lung Cancer Survivorship Conference in Washington, D.C. and meeting members of our EGFR community!
I think of myself as a person living with cancer. Spending time with my husband and family is a priority. Life is too short, as we all know too well. I feel extremely blessed to be given more time to spend with my wonderful family and friends. Their laughter and hugs fill me with joy, and I have decided to enjoy every minute!|
I was first diagnosed in March of 2017. In February, 2017 I experienced a persistent cough after changing medications for GERD. I felt that perhaps I was getting pneumonia (since I had a history of asthma) and requested that my family doctor order a chest X-ray. Within several hours of completing the test, she called me and suggested that the chest X-ray was smeared, and she wanted to order a CT scan. I had one within 24 hours. I was put on antibiotics over the weekend, and she called me first thing Monday morning and scheduled an appointment. I met with her, and she explained that there was a 5 cm by 7 cm tumor in the upper left lobe. I was immediately referred to the Cancer Assessment Center in Ottawa, Ontario. Two days later I met with a thoracic surgeon. The lung cancer diagnosis was clarified to also include spots in the lining of the lung. After a biopsy and thoracentesis, I was officially diagnosed with the EGFR+ mutation and Exon 19 deletion.
I was started on afatinib 60 mg in March, 2017. Although I was stabilized on the medication, the tumor had shrunk, and the lining spots disappeared, I suffered terrible side effects. So the medication was reduced twice to a dose of 20 mg.
However, in December, 2018 the lining began to thicken. I saw both a thoracic surgeon and an oncologist. It was determined that I should have a liquid biopsy since a tissue biopsy would be difficult due to insufficient pleural fluid left in the lung post PleurX tube. The liquid biopsy confirmed I had the T790M mutation in February, 2018 and I then was treated with Tagrisso 80 mg. I have responded really well to this treatment with minimal side effects.
How do I cope with my cancer diagnosis and treatment? Initially I felt really lost and was unsure of the efficacy and support of my oncologist. This was all so new and shocking to me. I leaned on my family doctor for support. As I became more active and gained knowledge of this new normal, my relationship with my oncologist became more trusting. I researched the illness, and I began to understand more about lung cancer. The turning point was when I met my oncologist at the IASLC 2018 conference in Toronto; then I truly knew this was the right person for me.
Although this diagnosis can be very devastating and time-limiting, slowing down and focusing on what is most important in my life has been very helpful. I try to live in the moment, welcome each new day as a blessing. I feel thankful that I have been given the time to appreciate all the things life has put in front of me. I am able to truly enjoy my relationship with both family and friends, while making cherished memories.
I do spend time on Twitter and different lung cancer foundation websites, looking up the latest research and clinical trials. My best resources come from the professionals on Twitter who are constantly advocating for this disease, webinars through various foundations, and local support groups.
The EGFR community has been an absolute blessing. As soon as I found them, I felt I was not alone. I felt supported and empowered with the knowledge of others on the same journey. I truly felt HOPE. I always try to find the silver linings in any situation; this group made things sparkle. The EGFR Resisters family has been a great support. I also have become a lung cancer advocate in Canada and am able to support others by sharing my own journey and experiences. I became involved with Lung Cancer Canada after the IASLC18, joined the Ottawa Lung Cancer Support Group (first support group in Canada) and have since completed a podcast for Lung Cancer Canada and volunteered at the lung cancer awareness table at the Ottawa Cancer Center. My personal goal is to increase awareness and educate by actively Tweeting on Twitter about all aspects of lung cancer issues from symptoms to stigma to latest research and clinical issues.
Tips for enjoying life with cancer:
Always try to find the silver linings in any situation. Wake up each morning, feel lucky that you’re here and that you can appreciate everything in life, even the smallest things. Don’t let life pass you by.
Advocate for lung cancer if you can. Tell your journey and provide support to others going through the same situation. I want to advocate and educate the public about lung cancer: the symptoms and the myths.
My life passion has been working for 27 years with patients who suffered from severe mental illness. I still maintain contact with some of them in the community through my treatment team. At Christmas, my friends and I make toiletry gift bags for all of the patients in a local group home. My other passion is as a dance mom. Five evenings a week I watch my daughter practice, and I socialize with the other dance moms but we are not like the TV show! My life these days is really focused on domestic engineer duties. Funny, I was so career oriented at one time, now I’m loving this slower pace and being in the moment and spending time focused on friends and family.
When I was first diagnosed with lung cancer on May 27, 2015 with adenocarcinoma, EGFR-19, it came as a two-punch hit. Just nine months prior I had completed radiation treatments to my right breast for stage 2 breast cancer. I was also put on adjunct therapy thereafter. During this time I was trying to get my life back to some new normal. What I thought could be a side effect from my radiation and pill therapy, is what led me to the lung cancer diagnosis.
Feeling congested, and sounds of crackle coming from my breathing, I requested a chest x-ray. With that came the next catscan, petscan, and brain MRI, which I pushed for at each juncture. I was on top of my care above and beyond, having had to advocate for my health for years!
I experienced pre-cancer cervical dysplasia in my mid-twenties and a stage 3 kidney cancer diagnosed in November, 2006 at 40 old, just eight months after giving birth to my second child! As you could imagine, all I could think of is “How can we stop these cancers?!!!!” At this point I did do extensive genetic counseling. My Dad had lung and kidney cancer. Turns out, I fall into a grey area, a mystery: I’ve been told several times, “It’s just bad luck!”
My first treatment for what they thought was stage 2 lung cancer was surgery and 16 weeks of chemo, with a curative approach. My first scan, one month after chemo completion, showed new nodules. We watched and waited for a few months, and sure enough the nodules grew, and now I was considered to have a recurrence (now stage 4). I was put on the targeted drug, afatanib, due to my known mutation from all my genomic testing.
Afatanib (Gilotrif) lasted about eight months.Then we added cetuximab (Erbitux) for seven more months. Tissue biopsy revealed a new mutation. (T790M) so I started osimertinib (Tagrisso) in November, 2017 which lasted 15 months. Then another tissue biopsy showed the C797S mutation. ( I didn’t lose the T790M.) Therefore I needed a triple mutant agent to target all three! CHALLENGE TIME!
With much research and second opinions, my doctor and I decided on a clinical trial in February, 2019 which targeted the HER3 protein, and so far it’s working! First scan at six weeks showed some resolution and significant reduction in nodules. Scan in May shows stability and improvement. I hope to continue on this treatment for a very long time!
Although at times I go from appointment to appointment, I’ve been able to maintain a pretty good routine that consists of running a household. With two teenagers things can get hectic! I incorporate “me time” best I can by walking, playing tennis, cooking, and taking photos! As a family, we continue to take time out to take family vacations to celebrate the life we have.
Our motto is: Whatever it is that stands in our way, deal with it head on. Communication is key. Expressing all emotions is important and finding the coping skills to handle it. Cancer has changed a lot in my family’s and my own life. I had to stop my business that I had for 20+ years. Cancer has taught me to take things in stride, here and now. I’ve learned to live the life I’m dealt. I have a wonderful husband who is a great supporter. He has MS and also deals with symptoms and side effects.
I learned to focus mainly on my blessings and silver linings. When I get into that dark place of “what if’s” and anxiety of the “unknown,” I allow myself to dig deep and go through it: let it out, reach out, yell out! I can then proceed with what I do know. Facts, research, and connecting to my lung cancer family EGFR Resisters Group on Facebook, Lungevity, and Inspire! I can truly say it is life-saving to have these connections and resources
at our fingertips!
Real people going through the same things, all give me power to move forward. I hope that in sharing my story, it can give hope to many.
–Never give up!
–Ask your questions, over, and over!
–Push for answers- when it doesn’t sit right, trust your gut – ALWAYS!
–Don’t let the bad comments stick!
–I rely on my faith to keep me sane!
I was diagnosed with stage iiib non-small cell adenocarcinoma lung cancer in April 2014. I was only 30 years old. I was working full-time in the business development department at my local ford dealership and had no clue what was coming ahead of me.
I started having chest pains and it brought me to the ER where they ran some tests. It came back high d-dimer and they suspected a blood clot so I was taken to have a chest CT. They found a blood clot in my right lung but also a mass in my left lung.
I quickly moved my care from my local hospital and started seeing Dr. Patel at Northwestern in Chicago. We did more tests, and it was confirmed that I had the EGFR mutation. At first, I thought this was a bad thing! I had no idea what any of the terms my doctor was using were. I was started on the drug afatinib (Gilotrif) and sent on my way. Unfortunately, the drug did not work. After one month, I had a chest CT, and they found that the blood clot remained and the tumor was bigger. I started IV chemo right away. The chemo worked for a few months, and I was able to have my original tumor radiated. It wasn’t too much later that I progressed with fluid around my heart. Dr. Patel sent my tumor out for wider mutations testing and it came back positive for MET amplification.
Since then I was a part of the osimertinib (Tagrisso) and AZD6094 (Volitinib) clinical trial (travelling back and forth to Boston under the care of Dr. Oxnard), I was on cabozatinib (Cabometyx/Cometriq) and erlotinib (Tarceva) for two years. We dropped the cabozantinib and added clinical trial drug ABBV-399 (telisotuzumab vedotin) and today I am currently only on Tarceva.
I was diagnosed five years ago, and it has taken me a lot of hard work to get where I am mentally today. I cope by living my life as I would have if I didn’t have cancer. I started working part-time again at the ford dealership and am currently looking for a full-time position outside of the dealership. With every ache and pain (and cough!) I worry that the cancer is progressing, and I think that is a natural response.
I love my care team at the University of Chicago. I am still a patient of Dr. Patel’s. When I have an appointment with her, I feel like I am her only patient. The EGFR resisters community has also been very helpful, and I feel like I have helped a few people along the way as well.
My advice to other cancer survivors is to do things every day that make you happy. My favorite thing to do is visit the local Starbucks or Dunkin Donuts for an iced coffee. My sister and I like to visit little cafes and cozy eateries in our area. My sister and family have helped me to stay focused on living my life and not dwelling on the cancer. A fun fact about myself is that my sister and I have seen Andrew McMahon in the Wilderness (google him) almost 50 times live. We have seen him in 10 states and two countries!
No one in our local community had expected Wendy, my lovely and beautiful wife, a healthy-looking never-smoker, would have lung cancer at this young age of 42. Her lung cancer was discovered relatively early due to back and shoulder pains, but she received a faulty diagnosis initially. Because there is no nerve in the lungs, it was the metastases into the pleurae that caused the nerve pains. She had had back pain for a long time after child-birth so her family doctor referred her to a physical therapist in 2012 and that alleviated her back pain; however, she then realized that she had shoulder pain as well so she asked the physical therapist to treat her shoulder pain next. Thankfully the physical therapist told Wendy she would need to get her family doctor to prescribe a new PT treatment which led us to see a local pulmonologist.
Unfortunately, she was first incorrectly diagnosed as having stage 1B large-cell lung cancer after our local pulmonologist (arrogant and ignorant and not by our choice) performed a bronchoscopy with biopsy in March 2013 to render that diagnosis. Prior to the bronchoscopy, Wendy already had a chest X-ray twice and a chest CT scan done locally. It was a tremendous shock to us, as Wendy and I are both never-smokers, and no one in our immediate family smoked. In addition, she has no family history of lung cancer either so even her primary care physician was shocked and said she had never seen a case like this.
After this faulty diagnosis, Wendy also did a whole-body PET scan to confirm that no apparent metastasis had occurred outside of the lungs, and thus a surgical resection (lobectomy) was scheduled locally in early April 2013 as a curative measure to remove the sub-4cm primary tumor. Our local pulmonologist told us that “the 5-year survival rate for stage 1B lung cancer is at 87%,” and “the lobectomy is most likely a cure,” and “having this is better than getting breast cancer,” and that “having a 87% chance of 5-year survival is like the chance of being hit by a car in the next five years, as there is no 100% survival in medicine.”
However, thank God that I happen to have some knowledge in biomedical sciences and research projects with some close friends and colleagues that are physicians. After extensive readings on lung cancer and discussions with them, I decided to take Wendy to MD Anderson, Houston, for a second opinion, despite the strong and repeated protests of our local pulmonologist who eventually yelled “What are the things that MD Anderson can do that we cannot do here ?!” I made this important decision after many prayers and discussions with Wendy. Leaving town for treatment 500+ miles away meant that our young teenage kids would be left home alone for days or even weeks. However, thank God many of our Christian friends were helping us, and my parents-in-laws also flew in from out-of-state to stay with the kids.
At MD Anderson, Wendy had another chest CT scan (as the one done locally was of terrible quality) and also video-assisted thoracoscopic surgery (VATS). As a result, Wendy was correctly diagnosed as stage IV non-small-cell lung cancer (NSCLC) adenocarcinoma in April 2013. The reason for her stage 4 diagnosis was mainly due to the pleural invasion and metastasis of the non-small-cell adenocarcinoma, which had spread to the pleurae on the right lung and also onto the chest wall. Subsequently, the lobectomy was aborted, and the primary tumor was not removed because it was clear she would need systemic treatment with these distant metastases.
We are also truly blessed to have visited MD Anderson to get the right diagnosis and subsequent treatments. We even got to stay at the guest house of a world-famous oncologist at MD Anderson simply because this doctor, who is also a cancer survivor himself, hosted one of the pastors we know in San Diego when she was attending a seminary at Houston 30+ years ago.
Wendy’s first treatment was platinum-based chemotherapy, which consisted of four rounds of carboplatin, pemetrexed, and avastin infusions every three weeks, followed by the maintenance of pemetrexed and avastin infusions. This front-line treatment was chosen because the doctors did NOT find her to be EGFR-positive from the tissue biopsy that analyzed 46-gene panel molecular profile at MD Anderson. Thus, we could not try EGFR-targeted therapy such as Tarceva, and our insurance would not have approved it anyway. In retrospect, we believe the main reason why Wendy initially tested negative for EGFR-mutations was most likely due to insufficient tissue, esp. from the primary tumor. The fact that our local pulmonologist even lost Wendy’s only biopsied tissue on the primary tumor from broncoscopy is unacceptable and inexcusable! Therefore, Wendy went through this platinum-based chemotherapy first as her front-line treatment, and it reduced the size of her primary tumor by ~60% and she tolerated it well.
First-line chemotherapy only worked for eight months for Wendy, as numerous small nodules appeared on both sides of her lungs in her December 2013 chest CT scan. Our excellent thoracic oncologist at MD Anderson stopped the maintenance chemo infusion right away on that date and asked us to decide which treatment we would like to select next: a more toxic taxane-based chemo or erlotinib (Tarceva). Our oncologist told us the ORR (objective response rate) for the taxane-based chemo is only ~9%, while for erlotinib the ORR for non-EGFR-mutant NSCLC is at only ~4%. However, after many prayers, we decided to try erlotinib next as there was still a slight chance that Wendy might be EGFR-positive as a female, young, never-smoking Asian. After 4 weeks on erlotinib, Wendy took a CT scan at MD Anderson and that night, before receiving the CT results the next day, we got to talk to the world-renowned oncologist who had so generously hosted us in his home and here is what he wisely told us: “Miracles do happen; they happen every day. In my line of work, I do see them happen. If God really wants to heal you, I tell all my patients about this, that He does not even need to use the hands of mine as a doctor to heal you; He can heal you directly Himself. Now that you have made this decision to try erlotinib, just pray for the best for tomorrow and accept God’s sovereignty and do not be afraid and do not lose hope! ” We found out the next day Wendy had a major positive response to erlotinib such that most of those numerous bilateral lung nodules disappeared, and erlotinib went on working for another 16.5 months, until Wendy developed some small pleural effusion that caused sharp pains when she laughed or when she moved in certain positions.
Her third line of treatment was afatinib + cetuximab, which is the combo treatment using the second generation of EGFR TKI afatinib in combination with biweekly infusions of cetuximab, an EGFR monoclonal antibody developed by the past president of MD Anderson, Dr. John Mendelsson and his colleagues at UCSD/MDA. Right after the infusion of cetuximab, Wendy developed a low-grade fever, muscle soreness, and flu-like symptoms that night of the first infusion, and within about a day, her position-dependent sharp pains were gone completely! This combo worked for another three years and six months until December 2018. Disease progression was rather slow, but skin toxicity side effects were difficult to manage, and thankfully our specialized dermatologist at MD Anderson was a real big help! Our insurance company initially denied the addition of cetuximab for a few months, but after our doctor’s petition, cetuximab was approved. At this point, Wendy was still considered EGFR-negative, and she had five additional liquid biopsies and they all turned out to be negative.
About a week before Christmas 2018, we received a call from our oncologist from MD Anderson, and he told us that to his surprise, Wendy’s latest liquid biopsy tested positive for EGFR mutation (L858R) and also positive with the T790M mutation, which most likely came as a result of acquired resistance to prior EGFR-TKI treatment. Therefore, he suggested we switch to osimertinib in January 2019. She again had a major response and that shrank her primary tumor to the smallest size since her diagnosis and there were still a few small lung nodules, but they all shrank as well as some suspiciously enlarged lymph nodes. She had felt great so far seven months into osimertinib!
Currently our local oncologist works closely with the oncologists at MD Anderson as a team, and that has provided an outstanding quality of care for Wendy. During the cetuximab infusion days for 3.5 years, we performed most of the infusions and managed the side effects and day-to-day concerns locally, and only flew to MD Anderson for bimonthly/trimonthly CT/PET/MRI scans, follow-up visits, and consultations. This model has worked out great for us, and our oncologists and their medical teams are truly outstanding and wonderful!
We take this disease very seriously and keep up with lung cancer research actively. As a member of ASCO (American Society of Clinical Oncology), I read their daily ASCO email updates and latest conference abstracts, including journals on EGFR-mutant NSCLC. I like to understand things and find out the fundamental reasons why something works while others don’t. This is like detective work and it makes me tick. (My Dad was a famous criminal detective and a very clear-minded critical thinker when he was alive). I also subscribe to newsletters from GRACE, EXON20 group, Oncolive, etc. and publish research papers. We also check and read latest postings from the EGFR Resisters Facebook site daily.
The EGFR Resisters community is very helpful as they keep us informed of the latest medical treatment and clinical trials for EGFR-mutant NSCLC and also the side effects and concerns from the “real patients’ voices” so we can all be better prepared for the next potential treatment options and medical decisions. This site is a great venue to directly help fellow patients, as we share our past experiences to help brainstorm the best ideas and exchange useful information to hopefully benefit fellow patients and caregivers.
Wendy’s cancer diagnosis has changed the lives of every member of our family and my professional life. I have reduced the amount of work I do daily in my career so I can have time to keep abreast of the latest research on NSCLC and to take care of my family. We want to live for the precious moments we have together and shift our priorities to what are most important in life. For Wendy, daily prayers, exercise, bible reading, focusing on the tasks and plans to be done, etc. helps keep her busy and healthy. We strive to exercise 10,000 steps a day. Our most important advice: “Be positive and never lose HOPE!” During our six-year-and-four-months’ journey fighting stage 4 NSCLC, we have learned that even though no one knows what tomorrow holds (as all patients are just one scan away from disease progression), we realized that living a life without HOPE is most unbearable! One day, we are all going to meet our Maker so why live a miserable life with fears, anxieties, negativities, and without hope? We all need to learn to rejoice as often as possible, pray unceasingly, and give thanks in everything we have. Knowing miracles do happen and God can heal you if He chooses to, and as our friend/doctor/cancer-survivor at MD Anderson wisely advised us more than five years ago, faith does provide us with this unexplainable inner peace, comfort, joy, and hope that transcends all understanding to help us face the unknowns and challenges ahead.
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