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.
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.
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 US FDA is hosting a listening session to gather patient perspectives on oncogene-driven lung cancer. Representatives from several biomarker patient groups will speak; I will be speaking on behalf of The ROS1ders. Representatives from the FDA will share ways they are addressing the concerns raised by the patients.
A malicious hacker recently took control of the ROS1cancer.com website (which I help to manage). WordPress suspects the hacker accessed the site by guessing a password of an authorized author on the site.
Over the past two days, WordPress worked with me to restore most of our content. During the process, the site automatically emailed a LOT of old blog posts to our subscribers (I apologize for all the emails you may have received.) Dozens of blog posts about living with ROS1 cancer that had been shared by patients around the world were corrupted when the hacker deleted the site’s list of authors and editors. WordPress is still trying to help me recover those posts without having to reconstruct every single one. I also had to request a new credit card number, since the hacker could see my card data that was used to pay the annual upgrade fees (more time lost updating my card info for autopays). At least the hacker hadn’t used my credit card yet.
It’s a cautionary tale that reminds us to practice good password management, especially on sites that contain vital information (like banking or personal info) that could cause significant problems if it were compromised. EVERYONE should:
Use STRONG passwords (more info below)
Create a unique password for each site
Change passwords regularly
Avoid reusing passwords
Alas, hackers use sophisticated tools to help them guess passwords. It is no longer sufficient to generate an eight-character password with one uppercase letter, one lowercase letter, and one number. But we all use a lot of passwords–I use over 400!–and generating a unique, strong password for each of them can be a real pain. What to do?
Use a password manager!
Password managers are software products that help you generate and store complex passwords, eliminate duplicate passwords, update your passwords regularly, and access your passwords on different devices and browsers. They will also allow you to autofill your password when visiting a site, if you wish. The best part is that you only have to remember ONE password to access ANY of your passwords.
I have used a password manager for years on all the PCs in our household, as well as on my tablet and phone. I love that I only have to change a password in the password manager software on ONE device to make the new password available on ALL devices. True, the apps can be glitchy at times, but I’ve seen a big improvement in features and performance in the past few years. For me, it’s been far easier and more accurate than maintaining all my passwords in a written notebook. I’ve never had one of my passwords compromised while using a password manager, although I know it could still happen–hacker tech is evolving rapidly.
Each password manager has a different combination of features and strengths. Which one is right for you depends on how you use your devices ( family? business? high-tech projects?) and how often you’ll use it on which platforms (Windows PC, Mac desktop, iPad, Chromebook, iPhone, Android, etc). Comparisons and rankings of products are published every year by reliable and impartial sources like PC Magazine, CNET,Wired Magazine, WireCutter, and Consumers Reports.
No one can guarantee a password can’t be hacked, but you can at least make your passwords harder for hackers to guess. When did you last update YOUR passwords?
The eight-hour virtual cancer research conference started at 5:45 AM
AND
The livefeed repeatedly crashed
AND
A researcher mansplained how to handle the survey that you just helped design
AND
A conference presenter says the targeted therapy cancer drug that is keeping you alive is too costly, and chemo (which didn’t work for you) is just as effective
AND
Someone in your international lung cancer patient support group dies for lack of access to drug that is standard of care in your country
AND
A local friend gets diagnosed with metastatic lung cancer
AND
A friend of another friend gets diagnosed with stage 4 breast cancer.
ROS1der cofounders Lisa Goldman, Janet Freeman-Daily and Tori Tomalia at the C2 Awards Ceremony in New York City May 2, 2019.
Eight years ago today, I first heard the words, “You have lung cancer.”
In 2011, I was diagnosed with stage IIIa non-small cell lung cancer (NSCLC). I had traditional chemo and radiation. Once treatment ended, my cancer immediately spread to a new site. Then I learned about online patient communities, and biomarker testing for genomic alterations, and clinical trials. I had more chemo and radiation. My cancer spread again. Then I tested positive for ROS1+ NSCLC, and entered a clinical trial. Now my cancer has been undetectable by scans for over 6.5 years thanks to research.
Eight years ago today, I first heard the words, “You have lung cancer.”
In 2011, the majority of lung cancer patients were diagnosed after the cancer had already spread, and half the patients died within a year of diagnosis. Now we have lung cancer screening for those at high-risk of lung cancer, to catch the disease in early stages when it is curable. We have new therapies that are allowing some patients to live well for 4 years or more. In 2011, the standard of care guidelines published by the National Comprehensive Cancer Network for non-small cell lung cancer were updated about once every 5 years. Now the guidelines are updated about 5 times a year to keep pace with the record number of new treatment approvals that are proving effective for an every-increasing number of patients.
Eight years ago today, I first heard the words, “You have lung cancer.”
In 2011, I had no idea what cancer advocates did. I’d never met any. As I began to feel better, I wondered why I was still alive when so many others had died. Gradually I began supporting others in online forums, telling my lung cancer story, learning about treatment options and research, and sharing my patient perspective with the lung cancer community, medical professionals, and policy makers in hopes of increasing funding, acclerating research, and improving outcomes for other lung cancer patients. Now there are dozens of other lung cancer patients and caregivers advocating as well.
Eight years ago today, I first heard the words, “You have lung cancer.”
From that singular moment of disbelief and panic, I started on a journey that has changed my priorities, and my approach to life in general. I now focus on living life to the best of my ability (whatever my abilities might be at the moment), on what matters most to those I love, on what will make a difference for other lung cancer patients–especially those who have my rare type of cancer.
I’m Janet Freeman-Daily, a cofounder of The ROS1ders. I’m writing this post in response to some of the comments we’ve seen recently in our private Facebook group “ROS1 Positive (ROS1+) Cancer.”
Many of our members who have ROS1+ cancers take the targeted therapy crizotinib (Xalkori), a tyrosine kinase inhibitor (TKI). It was approved by the US FDA for ALK+ non-small cell lung cancer (NSCLC) in 2011, and for ROS1+ NSCLC in 2016.
Many ALK+ and ROS1+ NSCLC patients have had long-term stability or no evidence of disease (NED) on crizotinib, and are tolerating it well. Some of these patients suggested they might “take a vacation” from crizotinib for a while, as some people do with chemo. They think this could help them avoid developing resistance to crizotinib (which could allow them to stay on the drug longer), and that they can start taking the drug again later if the cancer returns. Their oncologist might even agree with this idea. But …
PLEASE — If crizotinib (Xalkori) is working for you and you can tolerate it, consult a ROS1 expert before stopping treatment!
If your doctor tells you should stop taking crizotinib for a medical reason (like a severe side effect or toxicity), or temporarily during surgery or radiation, you should follow their advice. But don’t stop taking crizotinib just because you want a drug vacation.
ROS1+ cancer is a rare disease. Oncologists who have seen no or few ROS1 patients usually haven’t followed the fast-moving research into this disease.
Dr. Ross Camidge andDr Robert Doebeleare among a handful of doctors who have treated dozens of ROS1+ and ALK+ patients with crizotinib. Globally, they are considered experts in ROS1+ NSCLC. Both have told me they think it’s a bad idea for patients to stop taking Xalkori just because they’re NED or stable on the drug. Below are the reasons they gave me.
Targeted therapies are not the same as chemo. TKIs inhibit the cancer, but do not kill it. For metastatic cancer patients, cancer cells likely remain in the blood, lymphatic system, or body (we just don’t have the means to detect them–that’s why we say “no evidence of disease” instead of “cancer free”). If you stop treatment, you stop inhibiting those cancer cells, and any cancer that remains can resume growing—sometimes very fast. Those cells can continue to mutate. There is no guarantee that crizotinib will be effective against your cancer when you restart it after a “drug vacation.”
TKI flareis well documented for EGFR and ALK patients on TKIs like Xalkori. What is TKI flare? Some patients (not all) on TKIs who stop taking the drug can see their cancer grow quickly after just a week or two. When they restart the drug, it doesn’t always work again.
We don’t have much evidence of what may happen if NED patients stop taking their TKI, except for one study. In the study, EGFR+ NSCLC patients who had no evidence of disease on Tarceva (a TKI like Xalkori) stopped taking their cancer drug. All saw their cancer return within a year.
While chronic myeloid leukemia (CML) patients on a TKI (Gleevec) have been able to stop taking their TKI, their blood cancer is not as aggressive and deadly as lung cancer.
Each patient has the right to make up their own mind about their treatment, In my case, I have had no evidence of disease on crizotinib for 6 years. When I asked about stopping crizotinib, Dr. Camidge has told me that he does not want me to stop taking my cancer drug. I’m going with his expert opinion.
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.
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
Gray Connections 