As of November 2018 we have over 800 members worldwide, and growing strong. Join us and learn how other members are living with lung cancer.
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.
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.