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I got my first “lucky break” in 2006, when my chiropractor sent me in for an X-ray of my sore back. While the x-ray didn’t show the broken ribs that were almost healed, but which later showed up on a CT scan, they did reveal a spot in my lungs. That spot turned out to be Stage III adenocarcinoma.
I can’t tell you what type of mutation it was. In the Dark Ages of 2006, there were no tests for mutations. There was no need since there were also no targeted therapies and no immunotherapy. Back then, “personalized medicine” meant that someone fluffed your pillow. The only treatment options were chemo, surgery, and radiation.
Against long odds, chemo and surgery turned out to be enough. I had No Evidence of Disease for almost five years until I was re-diagnosed with Stage IV adenocarcinoma with the EGFR mutation in 2011. Since then, I have had more chemo, Avastin, radiation, and Tarceva. I was even stable (but not cancer-free) and on no treatment at all for 11 months. And 47 months ago, after developing the T790M mutation, I got into the clinical trial for AZD9291. That drug is now called Tagrisso. I am still progression-free and taking Tagrisso.
Why am I still alive? There are many answers to that question, but here are a few of the things I have done that I believe made a difference:
Opened my heart. After spending a lifetime of being a guarded, self-sufficient loner, I had to learn that I couldn’t do this by myself. I learned that the more I shared about my fears and hopes, the more people expressed their love. It has taken a battering ram of this love and caring to break through my lifetime of defenses, but the more courageous I can be with my sharing, the more connected I become with the people I care about. You would think someone who worked as a therapist for 25 years would have already figured this out, but, as they say on the cop shows, “This time it’s personal.” And I believe this new openness and connection to others empower my entire body to be stronger, healthier, and ready to fight cancer.
Opened my mind to alternative/complementary treatment. At the beginning of this journey, I pooh-poohed anything that didn’t have strong scientific evidence to support it. My criteria is different now and I keep an open mind to what I think might work and empower myself to be a cancer-fighting machine.
Removed the “cancers” from my life. There are certain people (you know who they are) that leave you feeling worse. I have cut off all contact with some old “friends,” as well as one close relative that left me feeling this way. Be selfish! Your life may depend on it. I also block out about 95% of the news, because watching murders, disasters, political bickering and the like is the opposite of healing. I am selective about TV, movies, and what I read as well.
Acted as my own advocate. There have been times where my own passivity in treatment could have ended badly, if not for a little dumb luck. There are other times when questioning medical advice and being proactive have kept me alive, including getting into the clinical trial for AZD9291/Tagrisso three days before the trial closed. You can’t afford to be passive and leave anything to chance.
Changed my attitude. There is always something to be grateful for. The secret is perspective. While chemo may not be fun, for example, I am extremely grateful that it is even an option. If we were born 60 years ago, or in less developed parts of the world, there would be no treatment at all. There are plenty of small things to be grateful for as well, such as a smile from a passing stranger, or coming into a warm house on a cold day, or a favorite shirt that hasn’t worn out yet. I believe that attitude impacts more than just our mood. It affects us at a cellular level and can have a significant impact on our health.
Increased my exercise. This one is high on my list. With exercise, I recover faster from surgery, chemo, and other treatment assaults on my body. I can fight disease better, and my mood improves. Exercise may even make chemo more effective. It helps prevent blood clots, which is something that people with lung cancer are more prone to get. It can also impact treatment options. It’s not necessary to be an athlete to exercise! The key is to do what you can as regularly as possible.
Connected with my spirituality. For me, this is through meditation. I feel calmer, more at peace, and more focused with this daily practice. Again, this tranquility may have an impact on a cellular level.
Worked for the greater good. This not only feels good; it can also be good for your health. I believe that this gives more purpose to my life, and my body becomes more determined to stay alive.Telling my story, whether it is in writing or in person, impacts other people and changes the face of lung cancer.
While I believe that all of the above are helping to keep me alive, that is not the only reason I do them. I think how much better my life is now, regardless of how long I live.
I was first diagnosed with Stage 4 adenocarcinoma EGFR exon 19 deletion in October 2014 with mets to my lymph nodes, bones (mainly spine) and brain (where there were more tumors than my medical team could count). The first treatment I received was radiotherapy to my C3 vertebra as the tumor was eating through the bone to my spinal column and threatening to paralyze me. At that time, I refused the Whole Brain Radiation I was told to have immediately because all my intuitive red lights started flashing. This was one of the first moments when I took back my power in the midst of shock and terror.
Subsequently I was on Afatinib for 18 months, which cleared my brain and affirmed my intuition. I then had Gamma Knife radiotherapy to my second round of multiple brain tumors (27 to be precise), which granted me another ten-month reprieve until they returned in full force, this time appearing in the meninges as well as the brain tissue. WBR was deemed my “only option” again. Instead, I requested brain surgery to biopsy one of the tumors for T790M (which my neuro-oncologist didn’t know about). It tested negative and I continued to decline for nine months to the point that I couldn’t walk without help. However, my oncologist and I agreed Osimertinib was still my best shot and we fought to get it, despite my not qualifying for it. My brain was clear again within two months and I continue to take it now. Currently, I am having Cyber Knife radiation to the primary tumor in my lung, which has grown for the first time in 3.5 years, but everywhere else is holding steady.
Acupuncture and Chinese herbs, good nutrition and colonics, intravenous Vitamin C and B17, hyperthermia, psychotherapy/transformational work, many supplements and off-label drugs from the Care Oncology Clinic have also been part of my treatment repertoire.
I am not interested in ‘coping’ with cancer. From the outset, I want to thrive – whatever the ultimate outcome – and this is what I have endeavored to do. I wrote The Cancer Whisperer because I wanted to help people navigate the emotional challenges of this disease, support for which is rarely on offer when we are diagnosed – at least not in the UK. When I was told I was going to die I started dying. It was immediate. And I knew I needed to attend to what was happening in my mind with as much diligence as attending to what was happening in my body. If we don’t take hold of our fear, our fear will take hold of us and make all our decisions. It will hand our power to doctors who are not always right – and what more important time to take the reins of our lives? We need to become experts in our own disease and our own care. I had no idea the book would hit such a deep need in cancer communities and am proud to say it is about to be translated into its twelfth language (Russian!).
Over time my oncologist and I have built strong mutual respect. He treats me as an equal and an expert in my disease. We collaborate in everything, but I still don’t tell him everything I am up to! He is lovely, but ultimately conventional in his approach.
I had wanted to write since I was ten, but it took cancer to persuade me to do it. My two books, The Cancer Whisperer and Lifeshocks, were published within three years. Sometimes I write myself back to life. To me, words are living organisms. I heal some part of my psyche whenever I put pen to page. This is my bliss. Meantime, I am the mother of a turbo-charged eight-year-old girl who inspires me to do whatever I can to keep walking this earth. I used to say “I would die for her”. Now I say “I would live for her!”
Health permitting, I work full-time as a patient activist, transformational facilitator, speaker, and writer. I am in touch with cancer patients around the world, and it is my privilege to support them through my closed Facebook group and other channels.
Cancer has changed my life radically. I know whom I love and who loves me. I am more myself than I have ever been. I am living my purpose on earth. I am at home in my own skin. I have no time for small talk or complaints. Be real with me or move on. I have zero tolerance for bullshit. I live compassionately, but truthfully. No more apologies for who I am and no more believing that I am too damn much. I have stopped hiding my light under bushels.
These days, I can sit in stunned silence as the sun sets while the rest of the world rushes by. I have made peace with dying, but not with leaving my daughter. This is a grief that walks with me through my days, but even grief is my friend now. Grief opens the heart rather than closes it. It is really just another name for love.
The subtitle of my book includes “the unlikely gifts of cancer” and there have been many. It is a rich, poignant, brutally exquisite time. And if I can’t live long, I will live deep. Here are some things I find helpful:
–Attend to the mind and heart as well as the body.
–Make peace with dying, then get on with living.
–Don’t treat cancer as an enemy. It’s an illness.
–Keeping fear and pain in also keeps joy and wonder out.
–Hold loved ones close.
–Live in gratitude, not complaint.
–Help people help you. They need your guidance.
–Go for long walks.
–Skinny dip in rivers.
–Feast on your glorious life.
This disease has been horrendous at times and I live on the brink — that sacred space of not knowing, but taking the next step anyway. I try to live each day as if it’s my last and suck the marrow out of all the precious moments. As I have said from the beginning, “I have cancer. Cancer does not have me.”
I was diagnosed with Stage IV NSCLC, EGFR mutation, Exon 19 in July 2016 following months of an unrelenting cough; visits to urgent care, an ENT, and my primary provider; and finally the ER where I underwent a chest CT scan and I heard the word “mass” for the first time. A PET scan revealed that the largest tumor was located in my upper right lobe, with metastases to the lymph nodes in my chest as well as my spine, sacrum, and rib.
My community oncologist provided the choice of two treatment paths: IV chemo that could start right away, or the possibility of targeted therapy that would have to wait pending the results of genetic testing that was underway. I did not fully understand the differences at the time and opted for IV chemo. Luckily, the genomic tumor testing came back as EGFR positive, and I was offered the option of Erlotinib/Tarceva instead. Within 3 months, a follow up CT scan showed significant shrinkage of all tumors.I struggled a great deal with managing the side effects of Tarceva, especially hair loss which was so significant that I had to get a wig. At this point, I began to access resources and support through Lungevity and social media. I was connected with Jill Feldman, who graciously invited me to attend a gathering of other LC survivors in Chicago hosted by Chris Draft of the Draft Family Foundation. Six months after my diagnosis, I met other LC fighters for the first time, along with Dr. Philip Bonomi, world-renowned lung cancer specialist and Mary Ellen Hand, nurse coordinator at Rush University Hospital. Looking back, that is a day that changed my life and would have enduring impact in terms of my cancer journey.
After about 1.5 years on Tarceva, I had a sudden onset of symptoms including vertigo, difficulty walking, and double vision. A brain MRI revealed approximately two dozen lesions throughout my brain, with the largest being in the cerebellum. At that time, my community hospital radiation oncologist recommended whole brain radiation (WBR). I was fit for my mask, and WBR was scheduled for the following afternoon. Additionally, I was prescribed Osimertinib/Tagrisso with the hopes that this targeted therapy would have better penetration through the blood/brain barrier.
Given our trepidation regarding WBR, my husband, Randy, and I sought out help from the lung cancer community. I went online to the Lungevity Facebook pages, received immediate advice cautioning against WBR, and also connected with other survivors who had brain mets but had treated them with targeted therapy and stereotactive body radiation therapy (SBRT). In the meantime, Randy reached out to EGFR Resisters Jill Feldman and Ivy Elkins who immediately suggested that I pursue a second opinion with the team led by Dr. Bonomi at Rush University Hospital in Chicago. These paths led me to Froedtert & Medical College of Wisconsin, an in-network provider for me, and after weighing all options through collaboration between my community providers as well as oncology teams at Rush and Froedtert, it was determined that SBRT in the form of gamma knife was the way to go. My outpatient brain surgery was scheduled for the week of Thanksgiving. The night before the early-morning appointment, I received a call from the hospital passing along the message that my SBRT procedure was denied by my insurance company in favor of WBR, which is considered the standard of care for anyone with greater than four brain mets.
That news set into motion the appeals process. It became my mission to inform the individuals driving my treatment decisions regarding best practice and current treatment options in the ever-changing world of lung cancer research. This 17-day period between insurance denial and later approval proved to be one of the most difficult times in my life. I was on heavy doses of steroids for a prolonged period of time and had sudden onset of depression due to my feeling of hopelessness and fear. I was able to cope with this through support of my family, friends and our close-knit community, our church, my therapist, and antidepressant medication.
While I didn’t realize it at the time, this interrupted treatment path due to insurance red tape was a blessing in disguise. When I underwent my MRI the morning of my rescheduled gamma knife procedure to provide the brain mapping needed to meticulously design the radiation that would penetrate my skull, I learned that 22 of the 24 brain mets were gone. Thank you, Tagrisso! I underwent the outpatient procedure to “zap” the remaining two mets and was home resting that afternoon and back to work the next day. The moment that paved the way toward advocacy for me was during my follow-up appointment with my local oncology team, when I learned that due to my experience, they would be changing their protocols to use WBR as an option only after consideration of a TKI first. I felt so validated in that moment!
In early 2018, I demanded another PET scan to address increasing pain in my right heel. I was convinced at the time that my cancer had spread to my heel bone. I also happened to mention to my oncologist at the time that I had a friend who had discovered a tumor in her left femur. Ironically, that knowledge changed my life as I continued to insist upon a full-body PET scan. While the PET scan didn’t find cancer in my heel, it did find a whopping 8 cm tumor in my right femur that was previously unrecognized since previous PET scans had stopped at the mid-thigh. My local oncologist and orthopedist insisted that I have major surgery to insert a metal plate in my leg, and I again pursued a second opinion with an orthopedic oncologist who offered a different treatment path. I underwent two bone biopsies, in my sacrum and femur, which confirmed presence of EGFR, followed by 23 rounds of radiation to those two locations.
Coping with what has been described as a “terminal illness” has been a huge challenge and definitely the most difficult battle I ever had to face. The first year was very rough, both for myself and also for Randy. I have gotten though it with his support, some pretty amazing friends and neighbors, my therapist, and new friends and acquaintances that I have made along the way. My biggest fears concern my three young sons, and I try to put all of my attention towards them, making meaningful moments out of our daily interactions and activities together. I find it challenging to manage my family, a full time job in a demanding career in mental health, and my cancer diagnosis, but I am determined to find balance with it all. I find cancer advocacy extremely important and have managed to weave that in among my other demands. It is so meaningful to be able to talk about my story, connect with other survivors, and learn from one another.
I am extremely lucky to have an incredibly smart and compassionate community oncologist who leads a dedicated team that would do just about anything for their patients! He is a true warrior when it comes to the battle with insurance companies, and the hoops he has to jump through when tests are denied have unfortunately become far too frequent. Aside from that, I value my oncologist because I know I can talk with him about anything from the physical side of my disease to the emotional and mental challenges and impact on my family. He welcomes input from others in the field and scheduled a second opinion for me when I was first diagnosed as if it was a matter of routine. He has shared that he learns from me and is always willing to review a scholarly article or discuss the latest research advances. He has come to expect lots of questions from my husband and me and is very patient. I believe that trust and confidence in your provider is of the utmost importance, and the patient should truly be in the center of decision-making regarding treatment options.
Since my oncologist treats such a wide range of cancer diagnoses, my husband and I feel it is imperative to educate ourselves regarding options in the short- and long-term of this disease path and regularly discuss future steps with my providers so we are all on the same page regarding my treatment path. We are in a unique situation because my husband is legally blind, and so when I was first diagnosed and was falling apart, he was busy listening to podcasts where much of our initial information came from. The first resource I found was Lungevity where I was matched with another survivor with my diagnosis through their LifeLine Support program. That connection led me to the Lungevity Facebook groups and HOPE Summits, the Bonnie Addario living rooms, the Lung Cancer Alliance, and the Chris Draft Family Foundation. The strongest connections I have with other survivors were built through Facebook messages and texts as I quickly learned that so many others have valuable information to share regarding their own journey of side effects, progression, and the roller coaster of emotions that goes hand in hand with this disease. If it weren’t for these connections, I have no doubt that I would not be able to say today that my cancer is stable.
There are two pieces of advice that I hold dear to my heart and share to encourage others whenever given the opportunity:
Become your own advocate! I truly believe that I would not be here today if my husband and I had not sought out the latest information on lung cancer research advances. We feel comfortable challenging not only our health insurance company but also our oncology team, and my care providers now come to expect that our appointments will consist of not just a physical exam, but numerous questions and dialogue regarding new publications and future directions in lung cancer research.
Patients who are positive tend to live longer. It’s definitely not easy to maintain a positive outlook through all of the ups and downs of this disease, but finding positivity through advocacy, survivorship, and doing whatever I can to be strong for my family is what I choose to do.
I am so incredibly grateful for the EGFR Resisters, and from a patient and advocacy perspective, it is amazing to me to experience the momentum behind this truly grassroots movement to draw greater attention to the plight all of us face when reminded of the limited options available to us after first-line TKI’s. By capitalizing on connections in the field and turning those relationships into funding, research, and marketing opportunities, EGFR Resisters is truly doing amazing work to shed light on this stigmatized and underfunded disease.
I was 56 years old and had never really been ill all my life. I had a very challenging senior management role, a great busy home life with my then partner, Richard, and a very seriously-ill mom whom I shared the care of with my sister. I had a fall in December 2012 in our local shopping centre and immediately got a cough which after six weeks seemed to calm down. My shoulder was painful and, thinking it was from the fall, I was set up for physiotherapy. However, I began losing weight and was tired which in hindsight I realised were symptoms of my lung cancer. In February 2013, I found a lump in my neck and was diagnosed on July 1, 2013 with stage 4 adenocarcinoma NCSLC with mets to my lymph nodes. Prognosis: 6 to 8 months!
My local hospital oncologist ordered a neck biopsy which was unsuccessful. I started chemotherapy, a combo of gemcitabine and cisplatin. I tolerated this quite well and my tumours shrunk. In early May 2014, the week before my lovely mom passed away, I was told the tumours were growing and my options were more chemo or a clinical trial. I opted for a trial. This meant a 150-mile round trip to Professor Dean Fennel and his team. He immediately ordered a lung biopsy; and the day before I was due to start the trial, I got a call telling me I had two mutations: EGFR and PD-L1. So I didn’t start the trial and was put on Tarceva (erlotinib) instead. It was the best news ever! The side effects were challenging: no sun, skin rash, severe diarrhoea (all journeys had to be planned via WCs!!), scalp rash, coarse curly hair, extremely dry skin and nail splits. But all that paled into insignificance when there was news of huge reductions in my tumours and then stability.
My dance with Tarceva came to an abrupt halt after 1.6 years. A large swelling appeared in my neck in the original spot of diagnosis. Radiation was planned. I already had a partial top plate of false teeth and all the rest had to be removed prior to radiation. This was very traumatic as my bottom plate was made too small, the last of my teeth extracted on a Friday, and I couldn’t get any dental support until the following Monday. Mentally and physically my recovery was slow. However, I recovered very well from radiation with no lasting side effects except for no teeth! But a CT scan revealed I had progression in my bones, spine, and pelvis. Another biopsy revealed two mutations: T790m and PD-L1. My doctor was able to secure a newly-available drug, rociletinib, manufactured by Clovis. I referred to it as “Rocky.” It did knock me sideways, causing massive high blood sugars and the need to take Metformin. These two drugs combined left me living in our WC for six weeks. Unfortunately, dramatic weight loss, mild depression, and no quality of life resulted, and I told my doctor that I would be stopping the meds as I could no longer live like this. Shortly after, rociletinib was taken off the market due to its drastic side effects.
It was then that Professor Fennel applied on a compassionate basis to AstraZeneca for Tagrissio (osimertinib), and it was secured in May 2016. It’s been a miracle drug for me for 2.5 years on. Side effects are so few and insignificant for me, thank God: finger and heel splits, nosebleeds, occasional tummy and eye issues. Result: Tumours shrunk significantly.
I believe that my “wellness “comes from a whole package of areas: my medication; phenomenal support from my husband, family, friends, and ex-colleagues; a well-balanced nutritional diet and sufficient water intake; light exercise; extensive counselling; and God and gratitude. I have a fantastic relationship with my Professor and his medical team: open, honest, and collaborative. We discuss new treatments for the future, and I bring my research to the table for his thoughts, but I make the final decision.
I spend many hours researching current and future treatments for lung and bone cancers via the Internet, social media sites, EGFR Resisters, The Cancer Whisperers, and many more. Inspire, Cure, Lungevity, and Roy Castle Lung Charity all provide fantastic information and support. EGFR Resisters not only provides useful information, it is also massively supportive if you have an issue and brings a real sense of belonging to its followers. One of our members has been influential to my becoming a patient advocate – Sophie Sabbage, The Cancer Whisperer. She and my medical team helped me manage with this disease and really helped me find my way.
I manage my life totally differently since cancer; my priorities have changed:
My husband, Richard, family, and close friends come first.
I look after myself mentally and physically.
I enjoy every day.
I express my gratitude to God and the universe for giving me time, I’ve organised my funeral, travelled through Europe extensively, had a couple of trips to the U.S. and Canada, and have experienced some amazing events I wouldn’t have had if I hadn’t been diagnosed.
I help and support others in any way I can, especially newly-diagnosed folk. Most of my life my motto has been to make a difference and it’s not changed because of cancer.
My advice to the newly-diagnosed or cancer survivors:
Become your own advocate! Know all there is to know about your type of cancer and make the decisions about your life from that knowledge.
Get biopsies when you have progression. They can be life-changing and life-extending. If you don’t trust your oncologist, get another. This is your life!
Find the good in every day and cherish your memories.
I’m a qualified life coach and I intended to use the skills for my own business when I retired. It didn’t quite work out that way. The skills I have I use every day to support other cancer patients. I believe I’m still here for a reason. Now, I’m a 5.4-year survivor and patient advocate. My favourite quote is “Everything happens for a reason” and I truly believe it.
I was 63 years old when I was diagnosed with cancer. However, my lung cancer diagnosis took over a year to confirm. In August 2015, I noticed some blood when I cleared my throat in the sink so I went to my internist who sent me to an ENT doctor. He told me I had a throat infection and sent me for a chest xray and then a catscan after a nodule showed up in my lung. I had just been laid off from my job as an internet marketing manager at a global consulting firm at the end of June 2015 and had put my house in the NYC area up for sale. My partner, George, and I were tired of shoveling snow in the winters and were looking to move to the West Coast.
My whole life, I always had a phobia around cancer even though it didn’t run in my family. I was an avid advocate of environmental consciousness and tried to eat clean and never used pesticides or nasty chemicals. So when the ENT told me he could not rule out cancer, it sent me into panic mode.
We ended up moving to the Seattle area, where I made an appointment with a highly-rated pulmonologist. He re-imaged my lung and the nodule had not grown. A bronchoscopy was negative so he sent me on my merry way, telling me that it wasn’t cancer and just advised me to get scanned every 6 to 8 months. Subsequent scans showed the nodule unchanged so I was a happy puppy until July of 2016 when I started experiencing severe neck pain which I thought was my degenerative disk disease kicking up. I followed up with a Seattle physiatrist who ordered imaging and found a “lytic lesion” on my C4 bone. She didn’t have the nerve to tell me it was probably cancer but sent me to an orthopedic surgeon to determine if the neck was “stable.” He was the one who told me he thought it was cancer that had spread from the nodule in my lung. I was aghast and couldn’t believe what I was hearing! An oncologist shortly concurred and surgery on my neck in August 2016 and biopsy confirmed I had NSCLC, adenocarcinoma with EGFR + mutation.
I was devastated and was sure that I was going to die shortly even though they replaced the diseased bone and radiated out any remaining disease in my neck. My older son was getting married in a year and I was terrified that I would not live to see it. My oncologist, Dr. Jack West, put me on Tarceva in September 2016 which shrunk the original lung tumor and annihilated the small tumors in the other lung. (It continues to be my magic pill still.)
However, before becoming a research maniac on the internet (I’ll get to that later), I had to take care of my mental state which was really bad. George and my friends would constantly tell me that I should be “positive” and that “everybody will die some day” which totally annoyed me. I told them that they should try and be positive when they had the cancer gun to their head.
By luck, I found a wonderful therapist who specialized in oncology patients and she helped bring me back to a state of mind where I wasn’t constantly thinking I would die. It took a good six months until I started getting more confidence with my diagnosis. Also my love of animals and daily “therapy” at the animal shelter where I volunteer in Washington state, helped me to find some peace of mind. There was a bunch of Anatolian Shepherd puppies that arrived at the shelter, rescued from a puppy mill. They were the cutest things and I just loved cuddling with them. One of them used to sit on my lap when I sat on a chair and wouldn’t let the others come near me. The shyest one was adopted by a volunteer couple and George and I became her step-parents. She loves my three cats and visits often. Her parents even bought a house near ours in AZ so that they are now snowbirds as well.
Who would have thought that a cancer diagnosis would turn me- always into liberal arts, avoider of all things science and math in school and college– into a scientific researcher, learning about metabolic pathways, TKIs, alternative cancer treatments, etc! As a result, I tend to have serious discussions and disagreements with my medical team and ended up doing sbrt to the original mothership nodule in my lung against both Dr. West’s advice and my oncologist at the Mayo Clinic in AZ where I winter over every year. (She will remain nameless as she flipped out on me and I had to change doctors.) Dr. West was right that it left a big mess in my lungs so he couldn’t use the tumor any longer as a barometer for progression but a year later, he did admit that I had made the right decision. He now is a big believer in ablative therapy.
Besides my medical oncologists, I also see an oncology naturopath in Scottsdale who was recommended to me by an integrative doctor at Mayo. He has me on intravenous Vitamin C and Curcumin and also on various supplements to block specific pathways that my cancer can take to try and resist the Tarceva. My oncologists are both skeptical but understand my need to get complementary treatment. I strongly believe that as a patient, we need to take ownership of our treatments in order to live longer and better.
My life now remarkably is pretty good so far. My therapist in Washington started a cancer group which I attend in person and by phone when I’m in AZ for the winter. I am enjoying retirement and find purpose and joy in my hobbies: quilting, making jewelry and pottery, and volunteering at animal shelters. I no longer think about dying multiple times a day. I try to avoid going to the dark places mentally but sometimes it happens, especially when I see that others with this disease have died. At some point, I know that the cancer will resist and that this will bring mental and physical challenges with it. And I hate that! So in the meantime, I am trying to push for more research in the post-TKI area by initiating the We Will Not Be Silent Campaign. I know that my life depends on this research; without it, I will die. I know that lung cancer is severely underfunded and most oncologists will agree with that if you ask them. I know that I love my life, my family, my cats and I’m not ready to go yet. How about you? There is power when we all work together.
Oh and my son got married and I was there. Now it’s a question of whether I will see my younger one get married, as he claims “Marriage is such an antiquated concept.”
My survival tips:
Take ownership of your treatment and actively get involved in advocating for more lung cancer research funding.
Find things that you love to do and do them.
Try to stay in the present moment and be kind to yourself.
Seek out complementary treatments that boost your immune system.
Read the EGFR Resisters Facebook posts. There is a wealth of information and support there.
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.
Welcome to the data gathering entry point for the EGFR Resisters Group! Please make sure only one survey is completed for each patient; caregivers can complete the survey if the patient/loved one has not already done so.