Lung cancer research gives patients hope, time with loved ones, and better quality of life. Ten years ago today, I entered a targeted therapy clinical trial for my ROS1+ lung cancer, taking an oral drug called crizotinib (trade name Xalkori). I’m still taking it (it’s now approved by the FDA and in many other countries) and have had no evidence of disease since I started it. Pretty amazing, since I had been given an expiration date of 2 years at the outside for my metastatic non-small cell lung cancer.
Today marks 11 years since I was first diagnosed with advanced lung cancer.
Eleven years with the mostly deadly cancer. Imagine that!
When I was diagnosed, my life expectancy was 2 years on the outside, and that was higher than the average because I was relatively young and otherwise healthy. The majority of lung cancer patients died within a year of diagnosis.
Thanks to online patient communities, targeted therapies, biomarker testing, clinical trials, and dedicated clinicians like Dr. Ross Camidge, whose smiling face appears next to mine in this picture, I’m still here. These things, along with additional new treatments like immunotherapy, new biomarkers, lung cancer screening, and ongoing medical research are changing the face of lung cancer. The expected survival of advanced lung cancer patients has risen by several YEARS since I was diagnosed.
Today, I’m grateful. Grateful for the medical research and treatments that have kept me alive with a good quality of life. Grateful for the additional time I’ve had with my family and this amazing universe. Grateful for finding a new purpose as a lung cancer research advocate collaborating on The ROS1ders, IASLC Supportive Training for Advocates on Research and Science (STARS), and other projects. And especially, I’m grateful for the wonderful friends and colleagues I’ve met along the way.
My prayer is that someday ALL people will have ready access to effective treatments and compassionate care for their health conditions, no matter what they look like, where they live, how much money they have, or how others believe they should be treated.
The original ROS1ders: Stuart Grief, Lisa Goldman, Tori Tomalia, Janet Freeman-Daily, Lysa Buonanno
I first “met” my friend Tori Tomalia in an online lung cancer community in 2013. A gifted writer, she already had a well-established blog that was funny, informative, and poignant. I admired the way she sculpted words to show how life continued despite all the downsides that accompany a deadly disease.
Tori was diagnosed with ROS1+ lung cancer about a year after me. We formed a connection through blogging and shared lung cancer advocacy activities, such as promoting #LCSM (Lung Cancer Social Media) Chat on Twitter. Her blog explored areas of life that I would never know: how to tell your young child you have a deadly cancer, how to make memories with the kids when you feel like crap. Her lung cancer journey was much different than mine. She had recurring brain mets that required radiation and sometimes brain surgery. While my clinical trial drug gave me years of no evidence of disease, for her it caused constant nausea. Clinical trial drugs failed her quickly. Yet her blogs and social media posts, though honest and at times raw, often found something positive to share, even if it was that she was still alive. Tori embraced life.
The first time Tori and I met in person was when five ROS1+ cancer patients found each other in a bar at LUNGevity Hope Summit in April 2015—a gathering that sparked the creation of The ROS1ders. I don’t remember much of that whirlwind weekend in Washington DC, but I clearly remember chatting with her on the bus coming back from the awesome Saturday dinner at a historic carriage house. Her quiet confidence inspired me. As I got to know her, I learned about her fierce inner advocate, ability to get the job done, and devotion to family. I also learned we shared a love of Buffy the Vampire Slayer.
Shortly after that event, Tori set up the private Facebook group that became the focus of The ROS1ders. She was often the first person with whom new members interacted; she had a gift for making them feel welcomed and hopeful through a computer screen. As we worked together, Tori often brought sparks of insight and inspiration to our discussions. She coined our name “The ROS1ders,” revised posts to make them understandable to a greater number of people, and frequently provided a reasoned, compassionate alternate viewpoint. One time when we needed a post to describe using mice to study our cancer, I asked Tori if she would write it. She was nervous about it, pointing out that she and I had different writing styles (I tended towards science geek, while she tended towards improv comedy). I told her different styles kept things interesting, and I knew I’d like whatever she wrote. When the blog was posted, I actually laughed with delight at her chosen title: “The ROS1ders meet the rodents.” (You were wondering why the title referenced rodents? Now you know.)
I think The ROS1ders have succeeded as much as they have because of the indescribable bond that the cofounders Tori, Lisa Goldman, and I shared. We never had a fight. We just talked things through. I feel blessed to have experienced this magic.
I was thrilled in 2018 when Tori and I discovered our clinical trial visits to the University of Colorado in Denver would be happening at the same time! I eagerly waited in the DIA terminal for her flight to arrive. As she came off the elevator, she gave me a big smile, and I smiled in return at her awesome high-top red-sequined sneakers (reimagining Dorothy in the Wizard of Oz). I played chauffeur for her that trip, and helped her navigate the CU campus as she went through all the tests and procedures required to enroll in the trial. We connected on a few more trips after that, including one where she accompanied me to the offices of the International Association for the Study of Lung Cancer and helped with early planning for the STARS program (which she named). Eventually Tori was able to move her clinical trial participation closer to home in Michigan. We didn’t see each other in Denver again.
My last meeting with Tori was in New York City in May 2019, when The ROS1ders were finalists for a precision medicine award. Tori and I wandered around NYC near our hotel looking for a mutually agreeable take-out restaurant. Later, we connected with Lisa Goldman and another ROS1der, Jess Wittebort, in the park outside the NY Public Library (where the event was held). We talked about life, death, and everything in between. We could talk about anything. It was a wonderful evening.
Tori did everything she could to stay in this world and share the adventure of living with her beloved husband, children, and extended family. In the end, the weariness of years dealing with treatments and side effects wears one down. I hope this story helps her children see the side of Tori that was so dedicated to helping others live better and longer despite ROS1+ cancer.
Zander, Mikaela, and Autumn: Your mama is amazing. She made a difference to hundreds of people. Thanks for sharing her with the lung cancer community.
Forty years ago today, Mt. St Helens exploded. I heard and felt the blast at my home 150 miles away in Tacoma. I could see the 15-mile-high cloud of ash from my front yard. I saw the lahar in real time on the evening news as a house rammed into a bridge over the I-5 freeway. I spoke to a friend in Pullman, Washington, as her day turned to night at Washington State University, just days before she graduated.
The true impact of the eruption and the losses were discovered in the following weeks. A vulcanologist tending instruments near the crater had died shortly after warning, “Vancouver, Vancouver, this is it.” Half-buried vehicles were found on the mountainside. Forests had been flattened, with sturdy fir trees snapped off like toothpicks six feet above the ground. Spirit Lake on the side of the mountain, as well as Spirit Lake Lodge and its caretaker 80-year-old Harry Truman, had vanished. A total of 57 people died. The Toutle River, which flows from glaciers on the mountain, was clogged with mud and logs all the way to the Columbia River, obstructing boats and barges. The I-5 between Seattle and Portland was closed for weeks for cleanup and safety inspections. The entire area looked more barren than a moonscape. The devastation was unimaginable.
Yet, even a few years later, life returned to the mountain. Flowers bloomed. Animals roamed through the ash. A new Spirit Lake began to form, and frogs that had been buried alive under scalding ash re-emerged, alive and kicking. Communities that had been desolated by the eruption and its aftermath came together, supported each other, and received assistance from neighbors outside the blast zone.
That was my first major disaster. It taught me that life goes on, nature finds a way, and silver linings can be found. I have some beautiful pieces of art created from Mt St Helens ash–they are unique reminders that the world does not end because major change occurs. The poster above hangs on my wall to commemorate.
Since then, I have coped with various disasters–parents stricken by dementia, a metastatic lung cancer diagnosis, and now COVID-19. Each of these rocked my world. But life goes on, and even in disaster, beauty can be found. We must be willing to adapt, to care for one another, to find a way.
I was diagnosed in 2011 with Stage 3a NSCLC, and progressed to stage 4 after first line chemo-radiation. Progressed again after 2nd line treatment (different chemo and more radiation). Then I tested positive for ROS1, enrolled in the crizotinib clinical trial in November 2012, and have had no evidence of disease on scans ever since, with manageable side effects.
A few months after starting the clinical trial, I felt well enough to think about what’s next. I was grateful for surviving thus far, and wanted to make a difference. In 2013 I found my purpose: I became a patient advocate, and over the years evolved into a research advocate. My time is spent on The ROS1ders (a global group of ROS1+ patients and caregivers that strives to improve outcomes for all ROS1+ cancers), the IASLC STARS program (to develop new lung cancer research advocates), collaborative cancer advocacy, and translating science for others.
Apparently living well with lung cancer and having a purpose was not enough. The ‘verse decided more character building was needed. Like everyone else, I am now learning to adapt to life during a pandemic. The whole world is now experiencing what we metastatic lung cancer patients live every day:
A deadly disease with no cure
Cumulative, sometimes overwhelming losses
The fear of not knowing when death will come for you or strike someone you love.
I hope someday every ROS1+ positive cancer patient, every lung cancer patient, every cancer patient will have a cure.
I hope the world will soon have effective treatments and a vaccine for COVID-19 .
I hope our healthcare providers and systems survive the upheaval.
I hope our economy recovers swiftly.
I hope more people recognize the power and value of science, working together, and compassion for one another.
This chart from the NCI’s SEER database shows the five-year survival for lung cancer. Note the awesome upward trend. Survival increased to 19.4% in 2015.
This doesn’t seem like a bit improvement until you think about what it reflects. The year 2015 was only four years after the FDA approved the first targeted therapy for ALK-positive non-small cell lung cancer (the first of MANY targeted therapy approvals), and the first year the FDA approved any immunotherapy for lung cancer (as of today, four immunotherapies have been approved for lung cancer). That means the 19.4% survival in 2015 doesn’t yet reflect ANY of the improved survivals from targeted therapy or immunotherapy (except some patients on Tarceva who happened to have EGFR-positive lung cancer).
Edit to add: Lung cancer screening for high-risk groups began AFTER 2015, which means we’ll be catching more lung cancers in early stages, when they are curable.
Imagine where this curve will go by 2020! Go cancer research!
Finally! A published study offers proof that metastatic ALK+ lung cancer patients can live for YEARS thanks to targeted therapies.
This is phenomenal, considering that in 2011 (the year crizotinib was approved in the US for ALK+ non-small cell lung cancer, or ALK+ NSCLC) , the US SEER database listed average survival for metastatic non-small cell lung cancer at less than one year.
In this study of 110 patients at University of Colorado (one of the sites in the original clinical trial of crizotinib for ALK+ NSCLC), the median overall survival time from diagnosis of stage IV disease was 81 months. That’s 6.8 years.
Over six YEARS of survival. Woohoo! Note that this median survival (when 50% of the group remains alive) will be even longer for patients diagnosed after 2011, when crizotinib was approved.
Besides finding patients with stage IV ALK-positive NSCLC can have prolonged overall survival, the study also found:
Brain metastases at diagnosis of stage IV disease does not influence overall survival. (Wow. Brain mets aren’t an automatic death sentence.)
Having more organs involved with tumor at stage IV presentation is associated with worse outcomes. (Bummer, but we can work on that.)
Prolonged benefit from pemetrexed chemo is associated with better outcomes (some patients in the study had chemo before or after a targeted therapy).
Yay for cancer research that is helping more lung cancer patients live longer! You can read the complete article here.
As a metastatic cancer patient, this resonates with me. The fact is, people die. Nothing can change that–not doctors, not preventative check-ups, not healthy living. NOTHING. Our bodies have built-in components that can cause disease (cancer being one) and tissue breakdown. All living things will eventually wear out and reach a natural end, like the potato in image above.
The Western World is so obsessed with not dying that we sometimes forget to live. Knowing how best to keep our bodies healthy is important, but at some advanced age we should stop worrying about lifestyle elements that aren’t perfectly healthful, stop intrusive testing for things that **might** kill us, and just focus on living as well as we can given our circumstances.
Ms Ehrenreich excerpted parts of the book in her article in The Guardian 31-Mar-2018. In it, she addresses society’s compulsive need to blame someone for dying. Did they eat the wrong things? Drink too much? Exercise too little? Smoke? Stress over work? Essentially, it’s the same issue we wrangle with lung cancer stigma, but applied to all health conditions. Why does dying have to be someone’s fault? Reality is, we’re all going to die of something.
Another article in the Guardian interviewed Ms Ehrenreich about her perspective. It starts with, “Four years ago, Barbara Ehrenreich, 76, reached the realisation that she was old enough to die. Not that the author, journalist and political activist was sick; she just didn’t want to spoil the time she had left undergoing myriad preventive medical tests or restricting her diet in pursuit of a longer life. While she would seek help for an urgent health issue, she wouldn’t look for problems.”
Those sentiments reflect my own thinking nowadays. I recently had several preventative health appointments: annual physical, Hep C screening, 3D mammogram, gynecological exam, and colonoscopy. Some of the procedures seem reasonable: for instance, a new vaccine can prevent more types of pneumonia (I know from experience that pneumonia reduces my quality of life), and having a polyp snipped is an effective and painless way to prevent colon cancer. However, I wonder if I should be spending money (mine as well as the insurance company’s) to undergo screening for cancers other than the one I’ve already got, given that I’m not sure I would undergo aggressive treatment for whatever they might find. Chances are, my metastatic lung cancer will eventually recur, and sooner rather than later. If the colonoscopy had detected advanced colon cancer, and my only option to treat it was radical surgery to remove a section of my colon, I’m not sure I’d do it given my lung cancer is not cured. If I have limited life remaining, why would I spend it recovering from a significant surgery that can’t cure me?
Each person will have their own answer to the question, “Am I old enough to die?” because each has their own set of priorities. I know some terminal cancer patients who would subject themselves to any level of discomfort in order to have more time with their small children. Others would find life is not worth living if they were unable to walk in the woods every day. Whether or not to undergo a cancer treatment should an individual’s decision based on personal priorities, overall health, effectiveness and quality of life impact of available treatments, and cost. But at some point, regardless of our priorities or treatment decisions, death wins. Many of us waste a lot of time, energy, and resources denying that fact.
For my two cents, Barbara Ehrenreich gets it right. I hope people listen to her and consider changing their perspective on life and death. It could make a big difference in their quality of life, and perhaps in the overall burden of healthcare costs as well.
Physicist Stephen Hawking died yesterday at age 76. As a science geek, I was awed by his amazing intellect and ability to explain difficult science clearly. As a metastatic cancer patient, I admired how he made the most of life despite a crippling health condition and grim prognosis.
Below is reprint of a Facebook post (with permission) by feisty science fiction author Pat Cadigan, a friend and ovarian cancer patient. She also knows about making the most of life.
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I never met Stephen Hawking, exactly. One day, I was in Covent Garden and as I walked along a sidewalk, two carers were getting him out of a specially-equipped van. I felt it would be inappropriate to stop and gush—the carers were in the act and I would have been interrupting. So I kept going—but I gave him a great big I-know-who-you-are-and-I-think-you’re-great smile. I like to think I saw a twinkle in his eye. I smiled at the carers, too, and they smiled back at me.
(Sometimes I think that they smiled at me because I didn’t look like I was pitying Prof. Hawking.)
When Stephen Hawking was diagnosed with motor neurone disease, he was given two years to live. He spun those two years into nearly half a century. This is practically unheard-of for people with motor neurone disease—it is a terrible, merciless condition that, at the time Hawking developed it, was not even as treatable as cancer. 76 is still too young an age to leave the building; I really hoped he would stay longer.
But while he was here, he made it count, even though he was unable to move, and then unable to speak for most of his life. His mind was lively, energetic, indomitable. He defied his circumstances and his prognosis. Hell, he even left his wife for his nurse—probably not his finest hour, but the heart wants what it wants, even when it’s confined to a wheelchair, unable to speak.
Most of us never achieve Hawking’s level of intellectual brilliance. But we can all try to ‘defy our prognosis,’ so to speak. We can confound expectations. We can make every moment count. We don’t have to accept what we’re told to accept. We don’t have to settle.
Maybe we won’t succeed in defying our prognosis, so to speak. But if we don’t try, we’ll never know.
You don’t have to lie down quietly. Even if you’re paralysed, you can go down swinging.
Wonder why I’ve been relatively quiet online recently? I just returned from a 15-day “Cities of Antiquity” cruise in the Mediterranean aboard the Viking Star. This trip gave me a much-needed mental health break–I actually spent two whole weeks on something other than lung cancer (though I did sneak online for 10-20 minutes several days).
Since I was still rehabbing my foot, I used trekking poles on walking tours and my knee roller on the ship to avoid overdoing. My left foot did not swell or turn blue even on days when my fitbit clocked over 10,000 steps. The tours gave me the most exercise I’ve had in six months, which is probably why I didn’t gain any weight on the trip despite the abundance of food, tempting desserts, and wide variety of gelato flavors.
Lots of perspective and leasons learned to be found in other cultures’ 3000+ years of history. We visited Athens, some Greek islands (among them Mikonos and Rhodes), Cyprus, Israel (Jerusalem, Nazareth, and the Sea of Galilee), Naples, Pompeii, and Rome. It was well worth yesterday’s 29-hour travel day (Rome to Seattle) and the upper respiratory infection that followed me home.
Gray Connections 