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Diagnosed in 2016

Hardeye Moel

HARDEYE MOEL: 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 breath which 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.

Diagnosed in 2016

Frances Baker

FRANCES BAKER: 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, 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.

Diagnosed in 2014

Diane Spry

DIANE SPRY: 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!

Diagnosed in 2013

Dan Cadigan

DAN CADIGAN: 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.

Diagnosed in 2016

Laura Book

LAURA BOOK: Just as I was retiring and moving across the country from New York to the Seattle area, the first hint of something amiss was blood-tinged mucous in the sink when I cleared my throat one morning. Being the hypochondriac that I was, I went immediately to my primary doctor who sent me to an ENT specialist. The ENT doctor sent me for a chest xray which I had the same day, only to be called back for a catscan of my chest, citing that there seemed to be a node on my chest in the xray. I was told to follow up with a pulmonologist and that cancer could not be ruled out. Wow, I was really anxious now but after a negative bronchoscopy and repeat scans, I was told that I didn’t have cancer and nothing had changed on the scans…..until….almost one year later when I had severe neck pain and after more doctor visits, it was determined that that “node” in my chest had caused metastasis to my C4 bone.

Surgery, bone replacement, and biopsy of this bone confirmed I had stage 4 EGFR positive lung cancer even though I was a never-smoker. It was then that everything changed to ‘before vs after cancer.’ It was a very rough time emotionally coming to grips with the fact that I now really had an expiration date. I wasn’t going to live forever…. a tough pill to swallow!

After getting counseling and joining a cancer support group, I got my “cancer legs” and proceeded to learn as much as I could about my lung cancer so I could be my best advocate when it comes to treatment decisions. Other ways that I ‘battle the beast’ is to advocate for lung cancer awareness and research funding. I now communicate regularly with my US Senators and Representative on lung cancer research issues and funding; I joined the EGFR Resisters Facebook group and volunteer as their Media Lead and newsletter manager; participate yearly in the GO2 Foundation for Lung Cancer’s Advocacy Summit as a state leader; and am a consumer reviewer (nominated by LUNGevity) for the Lung Cancer Research Program (LCRP) at the DOD.

Participating in the LCRP has been a challenging and rewarding experience. Although I always avoided taking science classes in college, I now find myself swimming in biology and clinical terminology. Cancer is a very tricky disease that always seems to eventually outsmart treatments. However, it is very empowering being a consumer reviewer and getting to see what may be coming down the research pipeline and being able to have an impact on what research gets funded. So many innovative and strategic ideas that I get to read about and review from the patient perspective. I sincerely hope that these efforts help lead sooner than later to a cure for lung cancer or a way to live with it as a chronic, not terminal disease, as I have a very cute new grandson in Chicago who I want to see grow up.

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