Our Global Tribe.
A few of our members
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.
Follow Kim on Twitter at @Kamacintosh
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.
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!
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, and 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.
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!
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.
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.