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.
In early June, the American Society of Clinical Oncology held its 2022 Annual Meeting (#ASCO22) in Chicago. This was the first in-person annual meeting since the pandemic began. While attendance was smaller than usual, McCormick Place (the largest convention center in North America) still hosted 30,000 oncology-related clinicians, researchers, healthcare professionals, patients, and advocates from all over the world.
To address the risk of COVID-19 transmission, attendees were required to prove they were fully vaccinated against COVID-19. Attendees also were required to have a negative COVID-19 test, and COVID tests were readily available during the conference. Masking was recommended – “ASCO expects all attendees to be masked indoors at our meeting when not eating, drinking, or presenting.”
I am a cancer research advocate living with incurable lung cancer for over eleven years. I started attending ASCO Annual Meetings in 2014. It’s wonderful to gather with other cancer patient advocates, network with oncology professionals, and learn about the newest research for my disease. I would have loved to attend in person this year, but I didn’t. I chose to attend virtually during the pandemic because my radiation-scarred lungs are prone to infection (I’ve had pneumonia more than once since my diagnosis), and lung cancer patients are at increased risk of death from COVID-19. However, I had a window into the happenings at McCormick Place via the #ASCO22 hashtag on Twitter, as well as texts and messaging from friends who were there.
Many attendees tweeted pictures of colleagues reunited after a long, trying absence. The pandemic has been especially tough on medical professionals. They needed the joy that reconnection brings. I don’t begrudge them that.
However, those images generated a different emotion for me. After speaking with several friends in the lung cancer patient advocate community, I’ve learned I’m not alone in my feelings.
I’m pissed that the ASCO community appears to have given so little value to the safety of people who have cancer. Here’s why.
RISK OF COVID-19 TRANSMISSION AT #ASCO22 WAS KNOWN BEFOREHAND TO BE HIGH
COVID-19 transmission was deemed high in Chicago by the city’s COVID Dashboard in the weeks leading up to #ASCO22. Omicron variants were on the rise and deemed very transmissible. With tens of thousands in attendance, chances of encountering someone infected with COVID were NOT low. Although omicron symptoms seem generally less severe, people are still dying from it–especially people with underlying conditions, like cancer. Others have lingering side effects.
Several medical professionals who attended the smaller 2022 American Association of Cancer Research (#AACR22) Annual Meeting in New Orleans last April tested positive for COVID-19 a few days after the meeting. Masks were not required at AACR, and few masks were seen in surrounding hotels, restaurants, and public transportation. By the start date of the much larger ASCO meeting two months later, community transmission of COVID was much higher. The likelihood someone at #ASCO22 would become infected was a virtual given.
MASKS WERE EXPECTED, BUT NOT REQUIRED
While ASCO expected masks to be worn, masking was not required nor enforced. On the second day of the conference, a tweet observed that perhaps 50% of attendees were wearing masks. Other tweets showed some attendees gathered for selfies and group pictures in session rooms and hallways wearing no masks. Others reported people at ancillary events and hosted parties that included food were frequently unmasked.
ONLY ONE COVID-19 TEST WAS REQUIRED, AND RESULTS WERE NOT CHECKED
ASCO 2022 required a COVID-19 test “within 48 hours of the time they entered any of the session rooms or exhibit hall.” This allowed international attendees with long flights to test after they arrived at McCormick Place. However, testing relied on the honor system: no one verified nor recorded test results. Both rapid and PCR tests were readily available throughout the conference for those who wished to test again, but no system was available for posting results. One doctor who planned to attend tested negative for COVID the day before travel. To be extra safe, they tested just before leaving for the airport. That second test was positive. As a result, she chose not to attend the conference.
It’s unlikely everyone was equally diligent with testing. How many people arrived at the conference unknowingly positive?
ONCOLOGY PROFESSIONALS, YOUR PATIENTS WANT YOU TO SET THE EXAMPLE
Oncology is a medical field that’s evidence based and highly dependent on data. Good results demonstrated in clinical trial data are essential to getting new cancer drugs approved by regulators and available to patients. One would think oncology professionals would be the first to follow the data when it comes to protecting their patients from COVID-19. People who have cancer expect our doctors, nurses, and other clinical professionals to set and maintain a high bar.
So many patient advocates typically attend ASCO that the meeting offers a Patient Advocate Lounge as well as patient-focused programs. Many of these advocates have active cancer. Before the meeting, both patient advocates and doctors pleaded with ASCO to make masking a requirement to reduce the risk of spreading of COVID to patients who attended ASCO, and to healthcare providers at ASCO who would be seeing patients in clinic when they returned home. ASCO refused. The letter has since been taken down, but is mentioned in this article.
Lung cancer patient and research advocate Jill Feldman had the honor of being invited to speak in an ASCO education session. Including patients on ASCO panels is still rare, and Jill takes the responsibility of representing the patient voice seriously. She chose to forego in-person ASCO except for the session in which she was speaking because she had significant COVID anxiety — she’d been hospitalized for the virus last December. She lives near Chicago, so she didn’t have to fly or stay in a hotel. She wore an N95 mask, except for her time on the podium. A tweeted picture of the audience in her session (since deleted) showed many faces and few masks. Despite Jill sharing her anxiety about possible COVID exposure at the end of her talk, some ASCO attendees approached her afterwards to chat without wearing masks.
I am grateful for the oncology professionals who are caring for me. I am glad they feel renewed by their experience at #ASCO22. I appreciate those who were careful to stay masked while at the conference.
Still, I am angry about the apparent disregard for people who have cancer that was demonstrated by ASCO as a community and the oncology profession as a whole. Many #ASCO22 attendees were unmasked while hugging, sitting shoulder-to-shoulder in sessions, chatting while in noisy food courts, catching up over Exhibit Hall lattes, and networking at after-hours parties. I wonder how many of them (or the people they were near) were in clinic the next day sharing their ASCO joy and COVID with immunocompromised patients.
A fellow lung cancer advocate and virtual #ASCO22 attendee tweeted her decision not to attend in person. Her choice was widely applauded: in five days, her tweet received almost 2000 likes, 200+ retweets, and dozens of “thank you” responses.
C’mon, ASCO community, you can do better. Cancer patients expect – no, REQUIRE – you to set a high bar. Step up.
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.
In May 2011—over 10 years ago–I was diagnosed with advanced lung cancer. At that time, chemo and radiation were the only approved first line treatments for advanced or metastatic lung cancer. Despite undergoing chemo and radiation (twice), my cancer spread to my other lung and became metastatic. I was not inspired by the five-year survival rate for metastatic lung cancer patients back then—it was around 2%.
However, in early 2011 a small clinical trial for a targeted therapy pill called crizotinib (trade name Xalkori) had begun for ROS1 positive (ROS1+) lung cancer. This cancer is driven by an acquired alteration in the ROS1 gene. This pill that sounded like an alien seemed to inhibit ROS1+ cancer in about 80% of people in the trial. That was amazingly effective for a cancer drug!
In the fall of 2012, I arranged to have my tumor tissue tested and discovered my cancer was ROS1+. I mentioned the clinical trial option to my oncologist, and he recommended I join the trial (even though it required travel) because the preliminary trial results looked promising. All he could offer me otherwise was a lifetime on a chemo that didn’t make me feel much like living.
I enrolled in the trial in Denver, Colorado—over 1000 away from home—on November 6, 2012, and hoped for the best.
I’m still here thanks to research. Today marks 9 years since I took my first crizotinib pill. I have had No Evidence of Disease (meaning no cancer shows up on any scans) ever since. Although I’m incredibly grateful to be alive and have a relatively normal life with tolerable side effects, I’m always looking over my shoulder. No one can tell me if I’m cured, because few others have been on the drug this long. Most patients find their cancer eventually becomes resistant to crizotinib and their cancer resumes growing. The population of ROS1+ patients is relatively small (only 1-2% of lung cancer patients have ROS1+ cancer), so research on our type of cancer is sparse. We have some clinical trials in process, but no second line targeted therapy has yet been shown effective enough to obtain any government approval.
That’s why Lisa Goldman, Tori Tomalia (may she rest in peace) and I–all people who had ROS1+ lung cancer–decided to do something about it. In the spring of 2015 we created a Facebook group for patients and caregivers dealing with ROS1+ cancer, and eventually formed a nonprofit known as The ROS1ders. Our mission is to improve outcomes for all ROS1+ cancers through community, education, and research. We have almost 800 members spanning 30+ countries, and are considered experts in our disease by some of the top oncologists in the world. We’ve already helped create new models of ROS1 cancer that researchers have used in published research.
We’re now planning a research roundtable in December to explore ways to collect real-world data on ROS1+ cancers, and will be hosting a ROS1 Shark Tank event next spring that will award two $50,000 seed grants for new ROS1 projects. We’re aiming to raise $100,000 this year to fund our work.
Cancer research advocacy is my passion. I’m able to use my skills and time to help make a difference for hundreds of other people living with ROS1+ cancers. It’s a purpose that keeps me going despite the ever-present specter of potential recurrence.
I know there are many worthy charities asking for money this time of year. Any small amount you can give will help accelerate research for hundreds of ROS1ders worldwide who, like me, are dying for more treatment options.
Many of my friends who have lung cancer take targeted therapy pills. Mine costs $17K per month when not covered by insurance. Some drugs cost even more.
Unfortunately, most all patients who take targeted therapy pills see their cancer eventually start to grow again. These patients often must change to a different anti-cancer therapy. When a patient has to change therapies, they may be left with unused medications.
Patients on expensive medications HATE to throw out their cancer drugs when those same drugs might help someone else live longer or more comfortably.
Some US states will allow “prescription reuse” — unopened cancer drugs can be donated for use by a different patient. As the map shows, state laws on this subject vary significantly, and not all states that have enacted prescription reuse laws have operational programs that enable reuse.
Why isn’t this easier? Why can’t I just drop off my unused pills at a pharmacy and know they’ll get to someone who really needs them but can’t afford them?
If you wish to donate unneeded cancer drugs, check with a local pharmacy or prescriber for practical advice on what may work in your situation, in your state. If your state has no operating program, contact your state legislators.
What a great opportunity for patient advocacy to make a difference!
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.
The first case of COVID-19 in the USA was reported on 1/20/2020—over 9 months ago. Since then, the country has reported 9,860,558 cases and 237,113 deaths (per Johns Hopkins). As the weather becomes cooler and we spend more time indoors, the number of cases is rapidly accelerating in almost every state.
Given this surge, holiday gatherings and activities present a serious risk for virus transmission. On November 5, 2020, the #LCSM (Lung Cancer Social Media) Chat community on Twitter discussed ways to enjoy and celebrate the holidays safely during the pandemic. Chat participants included lung cancer patients, caregivers, advocates, physicians, and healthcare workers. The chat, which included links to many helpful resources, covered the following topics:
What have we learned over the past 8 months about how COVID-19 is transmitted?
How can people reduce the risk of COVID-19 during outdoor activities?
How can people reduce the risk of COVID-19 when travel is involved? What about travel to or from hot spots?
How safe is it to meet with family and friends who had COVID-19 and recovered?
How can people reduce the risk of COVID-19 for indoor activities (shopping, dining in restaurants, family gatherings, worship services, etc.)?
This morning (Saturday) I had to ship scan CDs overnight from Washington state to my cancer doc in Colorado for my virtual appointment on Tuesday. Don’t fret, it’s routine follow-up–I’m not attending in person because I do not want to fly during a pandemic.
When I entered the UPS store, neither employee behind the counter was wearing a mask. Masks are required in Washington State as of yesterday, due to increasing cases of COVID-19.
When I politley asked the clerk serving me to put on a mask, he emphatically stated, “No, I’m not going to do it.” And stared at me.
Wow.
I needed to send the package ASAP, so I proceeded anyway.
I told the clerk I was sending medical records to my cancer doctor in another state because I don’t feel safe flying during this pandemic. I said needed them to arrive on Monday for my virtual medical appointment on Tuesday. He processed my package efficiently, but told me he couldn’t guarantee on time delivery due to COVID-19. Fingers crossed that it arrives on time.
I debated whether to say anything more about the mask. Despite being a somewhat outspoken patient advocate, I usually won’t make waves over customer service snafus that cost me a minimal amount of money–I have other ways to spend my time that will make more of a difference in the world. In this case, however, I decided the possibility of helping someone come to realize how masks help prevent the spread of COVID-19 was worth the effort.
When our business was done, I thanked the clerk, and (to acknowledge his viewpoint) said I understood he had a right not to wear a mask, that it can be inconvenient or uncomfortable. I then said if he wore a mask, he would help protect people like me, who are in the high-risk group for severe COVID-19. He looked at me and said simply OK. Then he called for the next customer.
I thought that’s all one can do in real time.
I posted about this incident on Facebook, and learned a number of my friends (many of them also in the high-risk group for COVID-19 due to age, health conditions, or both) had encountered hostility from unmasked workers in places of business. The suggestions my friends offered got me thinking about additional actions to address the issue of the unmasked during a pandemic.
I believe the science and data shows wearing a mask DOES help protect others and reduce the spread of the virus. I want more people to accept that they should wear a mask, even though it may be inconvenient or uncomfortable. Pressure from employers may change minds when compassion can’t.
However, I think confronting and/or intimidating the unmasked is not particularly safe–some people feel quite strongly about this topic, and will aggressively defend their “right” not to wear one. Besides potential verbal unpleasantness and bodily harm, confrontation may also generate shouting, which will only spread virus droplets further. If the individual does not respond to a respectful request, I think leaving the establishment is the safer route.
But I can continue to press after I get home. UPS will be hearing from me. Which leads me to the approach I’ve decided to take.
RESOLVED:
When being served during the COVID-19 pandemic by an unmasked (or improperly masked) person at a place of business, I will do the following:
Calmly tell the person I would appreciate them wearing a mask to protect me (a person at high risk of severe COVID-19). If they are wearing a mask but it’s not properly positioned to cover both the mouth and nose, I will ask them to position the mask properly. If they don’t comply, I won’t press further.
After I’ve left the establishment, I will contact the store’s manager and remind them if they want customers to come in, they must respect customer requests to be protected from infection. If applicable government regulations require wearing a mask, I will remind the manager of this.
If the store is a franchise, I’ll repeat #2 with corporate headquarters via phone, email and/or Twitter (many businesses scan Twitter to catch posts that could generate bad public relations).
If applicable government regulations require wearing masks, I will contact the appropriate health department to report the health violation.
Applying pressure through employers increases the chances that the unmasked will start wearing masks in public. I encourage you to participate in this!
Please share in the comments what approach worked for you. Please remember to keep yourself safe — avoid escalation!
Thanks to everyone who responded to my Facebook post on this subject for their great suggestions!
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.
Gray Connections 