“All good things must come to an end.” Please join us for our last-ever #LCSM Chat on Thursday December 2, 2021 at 5 pm Pacific. Take time to check in, reminisce & come together as a community one last time.
I’ve been a co-moderator for #LCSM Chat since shortly after it started in 2013. I must admit, it’s hard to see it end. I created its website. I wrote/posted most of its blogs. I worked with guests to create patient-friendly content. I’ve made many friends and connections. But it’s time for this to happen. It just represents a change in priorities–I have more than enough advocacy, writing, and personal projects to keep me busy.
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.
Show your appreciation for an individual who goes above and beyond to make a difference in the lives of those affected by lung cancer. If you know a hero who has inspired change, exemplified compassion or brought newfound hope to you or someone you care for, share their story by submitting an essay nomination for the 2021 Lung Cancer Heroes® awards. This is only the second year this award has been offered.
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!
Are interested in discussing an ASCO poster with a lung cancer scientist?
The IASLC STARS program, KRAS Kickers, and LUNGevity have partnered with GRASP (Guiding Researchers and Advocates to Scientific Partnerships) to offer lung cancer poster reviews at ASCO 2021. GRASP is a grass-roots advocacy effort that started in the breast cancer community.
In the GRASP format, a scientist discusses posters with a small group of patient advocates and an experienced research advocate. Virtual GRASP sessions will take place the week after the official ASCO meeting with six different sessions over the course of two days.
To take advantage of this opportunity for the 2021 ASCO Annual Meeting, please join GRASP (it’s free!) and then go to GRASP advocate registration to register one of the five lung cancer poster sessions on selected topics. Please also consider signing up for one of the optional GRASP training sessions (May 26 and 27).
If you have any questions, please contact Julia Maues firstname.lastname@example.org, patient advocate and cofounder of GRASP.
We look forward to seeing you at a poster session!
Exactly 10 years ago today, I was diagnosed with lung cancer.
It’s been a wild ride thus far. When I was diagnosed in 2011, the majority of lung cancer patients died within a year of diagnosis. I was considered curable, so I had chemotherapy combined with radiation. My cancer grew immediately when I stopped treatment. I had more chemo, followed by more radiation, but again my cancer grew immediately after I stopped treatment. You can read more details about my cancer ups and downs elsewhere on this blog, so I’ll keep the history brief. The upside is that I learned about clinical trials and biomarker testing from patients in online lung cancer communities, got my tissue tested for biomarkers, and joined a clinical trial for ROS1+ cancer.
I’ve been on the same oral cancer treatment (a targeted therapy pill) for over eight years with no sign of cancer on my scans.
I’ve run the gamut of emotions over those 10 years. Some days I felt horrible physically and/or emotionally. A very few moments, I felt hopeless.
Today, however, the predominant feeling is gratitude. Gratitude for the healthcare providers who took care of me. Gratitude for more time for life with family and friends. Gratitude that I was able to watch my son mature and build an independent life. Gratitude that I was diagnosed during a revolution in lung cancer research that generated new treatments, measurably increased lung cancer survival, and gave me a relatively normal life despite metastatic lung cancer. Gratitude for the growing community of lung cancer patients and advocates, and the deep friendships formed therein. Gratitude that I’ve found a new calling as a cancer research advocate.
Especially, I feel gratitude that I have been able to make a difference in the lives of other patients in those 10 years. My current focus is on supporting two programs I cofounded: the IASLC STARS program (which helps lung cancer patient advocates evolve into research advocates), and The ROS1ders (a nonprofit that aims to improve outcomes for ROS1+ cancer patients like me).
If you want to help me celebrate surviving 10 years, please consider donating to The ROS1ders. You’ll be helping me in my research advocacy work, as well as helping find better treatments and care for my cancer. I truly appreciate any support you can give. Just click here: Janet’s fundraiser for The ROS1ders
Exactly 10 years ago today, I was diagnosed with lung cancer. Today I’m going to walk in the sun and revel in the life blooming all around me. My lease on life is renewed yet again. I’ll hold on and ride it as long as it lasts.
Remember, the IASLC STARS Program is accepting applications for 2021 Patient Research Advocates through May 10! STARS aims to help lung cancer patient advocates evolve into research advocates. https://www.iaslc.org/patient-advocacy/stars
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.
I’m excited to participate in the STAT News video chat “What gene targeted therapies mean for patients with cancer” on April 8, 2021 at 1:00 p.m. ET (10:00 a.m. PT) on the topic The discussion will include a great group of speakers:
Bonnie J. Addario, lung cancer survivor; co-founder and board chair, GO2 Foundation for Lung Cancer
Narjust Duma, M.D., assistant professor of medicine, thoracic oncology, University of Wisconsin Carbone Cancer Center
Janet Freeman-Daily, MS, Eng, co-founder and board chair, The ROS1ders; stage IV lung cancer survivor & research advocate
Laura A. Petrillo, M.D., palliative care physician, Massachusetts General Hospital and Harvard Medical School
Camille Hertzka, VP, head of oncology U.S. medical, AstraZeneca (sponsor speaker)
Eric Boodman, general assignment reporter, STAT (moderator)
I am honored to be a presenter at the Collaboration for Outcomes using Social Media in Oncology (COSMO) online conference tomorrow, April 8.
I’m speaking in Session IV (Social Media in Oncology: A Multistakeholder Look) on a panel titled: “Patient Engagement in Social Media: When the Doctor is No Longer the Expert” at 1:40–2:20 pm Eastern Time. Registration for the two-day conference is FREE. Register here: https://lnkd.in/duYxM7e