Home » Patient-Driven Research
Proud to have co-authored this print article about expert patient contributions as educators, advocates, and research partners! Thanks to Collaboration for Outcomes using Social Media in Oncology (COSMO) for the opportunity.
You can read the full article online here: https://ascopubs.org/doi/full/10.1200/OP.21.00763
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.
Won’t you help me celebrate my 9th anniversary on my targeted therapy pill by donating to The ROS1ders? It’s easy—just click this link and donate on my Network for Good page. It’s tax deductible. (Here’s the link again: https://ros1ders-inc.networkforgood.com/projects/131093-janet-freeman-daily-s-fundraiser )
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.
Thank you for your support!
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.
Submit your nomination by June 30, 2021 here: https://event.curetoday.com/event/d49340bf-0224-4cb0-974c-9ad4633de436/
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.
Image credits:
Rollercoaster: © Helioshammer | Dreamstime.com – Roller Coaster Photo
Scrabble image: public domain
Flowers: Janet Freeman-Daily
The virtual 2020 IASLC North American Conference on Lung Cancer (NACLC 2020) runs October 16-17. Patients will be providing special perspectives throughout the conference.
REGISTRATION IS FREE for all patients and caregivers. Register here: https://naclc2020.iaslc.org/registration/
Check out the full program here. https://naclc2020.iaslc.org/program-at-a-glance/
Don’t miss these two presentations by lung cancer patient research advocates on Saturday, October 17th:
Ivy Horowitz Elkins and Janet Freeman-Daily on “Patient Driven Research” in the Targeted Therapy session (9:50-10:45 am CT)
Jill Libles Feldman on “Adjuvant Treatment: What Does It Mean for Patients” in the Keynote session. (11:50 am -12:40 pm CT)
The post below is shared with permission. It can also be found on the websites of the lung cancer advocacy organizations listed at the end of this blog post.
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This past week marked a grim milestone in the United States, as we officially surpassed 100,000 deaths from COVID-19. Our groups continue to recommend that the lung cancer community adhere to best practices to limit exposure, including wearing masks/face coverings when out in public, frequent handwashing, ongoing social distancing, and limiting non-essential travel.
Normally at this time, representatives from our respective organizations would be in Chicago for the annual American Society of Clinical Oncology (ASCO) meeting, for which over 40,000 oncology professionals gather to share best practices in clinical oncology research and academic and community practice. In light of the ongoing pandemic, ASCO 2020 was held as a virtual conference.
Note: There are many exciting updates and recent FDA drug approvals in the lung cancer space. These are being shared via other channels through our respective organizations and will not be covered here since our goal is to focus exclusively on relevant COVID-19 updates for the lung cancer community.
In this week’s update, we will cover three topics:
COVID-19 presentations from ASCO 2020
Previous reports have suggested that lung cancer patients infected with COVID-19 have worse outcomes. During ASCO 2020, we heard updates from two different registry efforts focused on tracking cancer patient outcomes:
Take home message from these studies: COVID-19 presents a unique threat to all cancer patients, especially those with lung cancer. Various international efforts are underway to understand these risks and what it means for patients and their cancer care. As states continue to reopen, it is important not to let your guard down and to maintain all the precautions you have been taking over the past few months. This virus has not gone away and it is important that you and your loved ones take appropriate steps to minimize exposure.
Advocacy groups participate in IASLC “Lung Cancer Considered” podcast
Authors of these weekly updates, including Dr. Jan Baranski, Janet Freeman-Daily, Dr. Amy Moore, and Dr. Upal Basu Roy recently participated in the International Association for the Study of Lung Cancer (IASLC) “Lung Cancer Considered” podcast. They were joined by Jill Feldman, Dr. Alice Berger, Dr. Christine Lovly, and Dr. Brendon Stiles to discuss impacts of COVID-19 on lung cancer research. Despite the obstacles created by the pandemic, lung cancer research marches on and we think you will be encouraged and inspired by the discussion. Listen here.
Advocacy groups collecting data for AACR COVID-19 and Cancer conference
In light of the COVID-19 pandemic and its impact on cancer care, AACR is convening a special conference focused on the presentation of emerging data in basic, clinical, and epidemiologic research related to COVID-19 and cancer. Lung cancer patients are especially vulnerable to developing a serious case of COVID-19. In order to provide the community accurate, up-to-date, and curated scientific information on COVID-19 and cancer, lung cancer patient advocacy groups have come together to support our community through joint advocacy updates.
We need your help and your perspective!
We are inviting you to participate in this 10-minute survey to capture your concerns about COVID-19, and whether you found this collaboration and the updates useful. The survey will close at midnight Pacific Daylight Time, Friday, June 5, 2020 to allow us to prepare abstracts for submission to the AACR “COVID-19 and Cancer” virtual meeting.
You can also copy and paste this link on your web browser to take the survey.
https://www.surveymonkey.com/r/LC_JT_Updates
The data we collect from the survey will also be shared openly across all advocacy groups once the conference is completed. Thank you for your help and for providing us your perspective.
Resources and websites:
Please join lung cancer patients/survivors Teri Kennedy, Jeff Julian, Don Stranathan, Andy Trahan, and me, along with Dr. Amy Moore (Director of Science and Research, Bonnie J. Addario Lung Cancer Foundation, also know as ALCF) Tuesday January 15, 2019 5:30-7:30 pm Pacific Time for a discussion on “Navigating the Latest Advances in Lung Cancer Treatment.” I’ll have an opportunity to talk about The ROS1ders and the research project we created in partnership with ALCF.
Join us in person in San Carlos, California, watch live on Facebook, or watch later on YouTube or in the Living Room Library.
I’ll be attending the annual World Conference on Lung Cancer (#WCLC2018) in Toronto Canada later this month. For those who are interested, I will be making two presentations. Hope I’ll see you in the audience!
OA10 – Right Patient, Right Target & Right Drug – Novel Treatments and Research Partnerships
Tuesday 9/25 10:00 AM to 12:00 PM
Oral Abstract Session in the Targeted Therapy Track
Moderated by Howard (Jack) West, Jyoti Patel
ES05 – Collaboration Between Stakeholders to Improve Lung Cancer Research
Tuesday 9/25 15:15 PM to 16:45 PM
Education Session in Advocacy Track
Moderated by Bonnie Addario, Toshiyuki Sawa
I hope you’ll support me and the Global ROS1 Initiative as we strive to accelerate research, find better treatments and hopefully cure ROS1 positive (ROS1+) cancer — which I have. Here’s a National Cancer Institute blog about the Initiative. This project is very dear to me.
If you’ve been meaning to contribute, or you have friends or family you’ve been meaning to ask to donate, do it today, or sometime before the end of the year! The recently-signed US tax law revisions may affect whether you can claim a tax deduction for your charitable contributions after January 1, 2018.
Thanks for supporting ROS1+ cancer research—you could help save someone’s life someday. For those who want more detail about the project and fundraiser, read on!
My type of cancer is driven by an alteration in the ROS1 gene. Medical research has made it possible for me to live well with aggressive, metastatic ROS1+ lung cancer since 2011. However, ROS1+ cancer is uncommon (only 1%-2% of lung and other cancers) and not well understood. Only one approved ROS1-targeted drug exists, and patients eventually develop resistance to it. Little is known about how this disease begins, progresses and develops resistance to treatment.
This fundraiser directs funds to the Bonnie J. Addario Lung Cancer Foundation (ALCF), a 501(c)(3) nonprofit (view their Guidestar page); monies are placed in an ALCF account designated for our ROS1 project. Donations are tax deductible under US tax laws.
I helped to create the Global ROS1 Initiative, a unique collaboration between ROS1+ patients, caregivers, researchers, clinicians, and industry. This is the first-ever effort initiated by patients to focus on cancer driven by a single genomic alteration anywhere in the body. We are initially funding projects in the US (takes time to learn about international research collaboration), but our patient group is global, with patients in 19 countries to date.
Funds in the ROS1-designated account will be distributed by a panel of Global ROS1 Initiative representatives (including patients) to our projects. We are funding two projects at present:
As part of our patient-driven approach, we aim to make our data and models widely available to the cancer research community instead of holding it in silos at individual institutions. We will be creating a biorepository of our specimens with annotated patient data, including making use of patient registries (like the Lung Cancer Registry) that share de-identified data will validated researchers. The cancer models we create will be distributed at minimal cost to researchers.
The ROS1ders also help spread vetted information about ROS1+ cancers to patients, caregivers, and the public. We donate our time to maintain and write content for the ros1cancer.com website which shares up-to-date information about ROS1+ cancer, names of ROS1+ experts, known treatments and their approval status globally, and available clinical trials focused on ROS1+ cancers. We also administer a private Facebook group in which ROS1+ patients and caregivers share their experiences, news about our cancer, and tips for living with our disease (more info on joining this group is here).
I’m excited to be one of the handful of patients speaking in a public forum tomorrow evening at The Broad Institute in Boston, Massachusetts (well, technically, Cambridge). We’ll be sharing our “Lessons for Creating Patient‐Researcher Partnerships to Accelerate Biomedical Progress.” I get to talk about the founding of the ROS1ders and the Global ROS1 Initiative.
A host of engaged patients, cancer researchers, and other healthcare types, among them the American Society for Clinical Oncology and the Biden Cancer Initiative (which grew out of the Cancer Moonshot) will be there. This could be the start of something BIG. At a minimum, it will spontaneously generate a HUGE group hug with advocate friends old and new.
Coincidentally, we’ll be staying at a hotel just a few blocks from my old MIT dorm during MIT Reunion Weekend. I’ll be too late for reunion festivities–attending the ASCO Annual Meeting last week took priority. Still, I’ll wander over on my knee scooter (still healing after foot surgery) in the 90º-plus heat. I ought to be able to reflect on my crazy undergrad days on Third East in the East Campus dormitory for at least five minutes before seeking refuge inside an air-conditioned building. Next year I plan to indulge in my 40th MIT Reunion–I didn’t expect to live long enough to see it, and I’m going to take full advantage of the the opportunity!
Gray Connections 