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.
GO2 Foundation for Lung Cancer (with the support of the entire lung cancer community) has submitted an appropriations request of $60M in the FY23 Defense Appropriations Bill with a goal to increase funding for the Department of Defense Lung Cancer Research Program (DOD LCRP) to $60M from its current $20M. The entire lung cancer community is joining forces to make it happen!
It takes only a couple of minutes to make your voice heard. But when all our voices join together, it becomes a ROAR.
Please click the link below and follow the instructions to tell your US Senator & Representatives to support $60 million for federal lung cancer research in 2023. Tell your friends & family. Please share widely on all your social media platforms.
HURRY! The House letter deadline is April 26 and Senate letter deadline is May 12, so don’t wait.
Today Washington’s state-wide mask mandate is gone (though masks are still required in some settings). When you see people still wearing masks, please don’t give us a hard time. You don’t know the health conditions we or people we love may have.
The mask mandate is gone, but the COVID-19 virus is not. Medical research has collected data that shows certain populations are at higher risk of severe or fatal COVID-19 if exposed to it. Older people, especially those over age 80, have less effective immune systems.
Sometimes people are at greater risk because of physical issues. My lungs have been damaged by radiation treatment for lung cancer, and are unable to clear nasties as effectively as they once did. I’ve had pneumonia several times since my cancer diagnosis nearly 11 years ago. Hospital data shows people with some chronic conditions like heart disease and diabetes are more likely to get severely ill if they get the virus.
Some people are at greater risk due to compromised immune systems. Medical treatments like chemotherapy or high-dose steroids impair the immune system. Very young children have immature immune systems.
It’s not a given we’ll get severely sick, but the odds are not in our favor. We’re into risk reduction. Medical data show KN95 and N95 masks reduce the likelihood of catching COVID-19. Our doctors suggest we should wear masks when in public. The CDC recommends we continue to wear masks. More data is needed for those of us at increased risk before we take off our masks.
When you encounter someone wearing a mask, or resistant to indoor dining in restaurants, or unwilling to attend a event with a large group, please be kind.
“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