10 years with lung cancer. Grateful for the ride.

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.comRoller Coaster Photo
Scrabble image: public domain
Flowers: Janet Freeman-Daily

#LCSM Chat Topic 6-May-2021: “The Hows and Whys of Cancer Research Advocacy”

Please join #LCSM Chat and other Twitter cancer hashtag communities as we discuss “The Hows and Whys of Cancer Research Advocacy” on Twitter Thursday, May 6th, at 5 pm Pacific (8 pm Eastern). Join us to learn how cancer research advocates bring value to research!

More info about the chat (including the five discussion topics) on the LCSM Chat website: https://lcsmchat.com/2021/05/02/the-hows-and-whys-of-cancer-research-advocacy/

Learn how to participate in #LCSM Chat here: https://lcsmchat.com/lcsm-chat/

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

In memoriam: two ROS1+ lung cancer patients, bound by rodents

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.

8-Apr-2021 STAT Video Chat Event: What gene targeted therapies mean for patients with cancer

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)

You can register for FREE at this website to view the event live:
https://marketing.statnews.com/what-gene-targeted-therapies-mean-for-patients-with-cancer

8-Apr-2021 COSMO Panel–“Patient Engagement in Social Media: When the Doctor is No Longer the Expert”

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

My fellow panelists are all awesome:

Chair: Patricia F. Anderson, MILS @pfanderson
https://www.facebook.com/pfanderson

Tamika Felder @tamikafelder
https://www.facebook.com/tamikafeldercampbell

John Novack, MS @J2Novack
https://www.facebook.com/john.novack.98

Dorinda (Dee) Sparacio, MS @womenofteal
https://www.facebook.com/dsparacio

Thanks to Don S Dizon for the invite to participate!@drdonsdizon

FDA Listening Session on Molecular Subsets of NSCLC — 21-Jan-2021

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.

When: Thursday, January 21, 2:30 pm to 4 pm ET.

Where: To receive a link to the event, register free at https://fdaoce.formstack.com/forms/nsclclisteningsession

If you’re unable to attend, you can watch the recording later.

Musings on an Eventful Day: 6-Jan-2021

 

It’s been one heckuva week.

Recent events have prompted me to reflect on pivotal truths I’ve learned during my lifetime:

  • Things will not always be how I want them to be.
  • Each human is unique. No two people have the exact same life experience, interests, and perspectives–not even identical twins.
  • Some people willingly accept a new concept. Some require more explanation or evidence before they’ll believe. And some will never accept.
  • People will rarely change their minds about something that is an essential part of their core beliefs.
  • An event or experience can create a wide range of emotions in different people, or even in the same person.
  • I can’t know precisely what another person is thinking or feeling unless we communicate about it.
  • Some problems are far more complex than I realize.
  • I must save my energies for things I can change, and let the rest go.
  • I cannot control the universe. Not even a little bit. (Cancer taught me this.)

Sometimes the weight of these truths seems overwhelming. When that happens, I try to focus on other truths I’ve learned:

  • Holding on to anger is bad for my health. Let it go.
  • I can choose to be happy.
  • In each day there is always one good thing, however small. 
  • Practice gratitude. Life is a gift.
  • The sun will rise tomorrow. I get to try again.

May we all find our best selves, and, someday soon, learn to live together in peace.

#LCSM Chat Topic 01/07/2021: What are your predictions for the Rx of #LungCancer in 2021?

TODAY! What are your bold predictions for innovations, policy changes, advocacy strategies & anything else in the prevention, detection, treatment of lung cancer & support of our community? Join moderator David Cooke, MD for #LCSM Chat on Twitter! Read more here:

#LCSM Chat Topic 01/07/2021: What are your predictions for the Rx of #LungCancer in 2021?

CLCC statement regarding COVID-19 vaccinations for cancer patients

See the source image

The COVID-Lung Cancer Consortium (CLCC) is a global forum comprised of experts in thoracic oncology, virology, immunology, and vaccines, in addition to representatives of patient advocacy, government, and professional organizations. They meet every other week to address issues and explore research at the intersection of COVID-19 and lung cancer.

CLCC has drafted a statement about the importance of prioritizing cancer patients for vaccination against COVID-19. Its language has been enthusiastically endorsed by leading clinicans and scientists. We hope it will encourage vaccine prioritization of patients with cancer–especially patients with lung cancer–so that vaccine doses will be made available for them should they CHOOSE to be vaccinated (after discussing risks and benefits for their individual case with their healthcare provider).

ASCO is also working to ensure that cancer patients receive priority designation in vaccine distribution plans.

CLCC Statement Regarding COVID-19 Vaccinations for Cancer Patients

Individuals with several clinical features and co-morbid conditions, including cancer, are at increased risk of severe COVID-19 disease. Of particular concern, patients with lung cancer have increased mortality rates of ~32% from COVID-19 infection, which calls for specific prevention measures. Currently, individual states have varying plans regarding prioritization of these high-risk patient populations for vaccination, with some states recommending cancer patients be vaccinated early while other states place these patients farther down the priority list. The COVID- Lung Cancer Consortium (CLCC) meets on a regular basis to monitor ongoing impacts of the pandemic on patients with lung cancer and is comprised of a global assembly of thought leaders in thoracic oncology, virology, immunology, vaccines and patient advocacy. CLCC recommends that state-level policies for vaccine administration should strongly consider a high priority for vaccination of all cancer patients and especially lung cancer patients. Thus, as more vaccine doses are made available, these patients will have early access should they choose to be vaccinated after discussion with their healthcare providers of the associated risks and benefits. Clearly, we still do not yet have enough information about the effectiveness and any additional side effects of such vaccines in cancer patients depending on their cancer type, stage, treatments, and other medical conditions. As such key information becomes available, like that from current NCI sponsored research, adjusted recommendations based on scientific knowledge can be made. Currently, the CLCC recommends specific attention to this vulnerable population(s) and close follow-up of these individuals to ensure the vaccine is effective and there are no unexpected adverse events.

Update for Week of December 14, 2020, to the Joint Statement on #COVID19 from #LungCancer Advocacy Groups


The first case of COVID-19 in the USA was reported on 1/20/2020—over 10 months ago. Since then, the country has reported 15,718,811cases and 294,535 deaths as of December 12 (per the Centers Disease Control and Prevention). With 80% of US counties reporting more travel than last year over Thanksgiving weekend in November 2020 despite warnings from the CDC, we are finally seeing the impact of this holiday surge.

  • The number of new cases is up more than 20 percent from 2 weeks ago
  • The number of hospitalizations has increased by 21 percent
  • The number of deaths has jumped 39 percent, with the United States surpassing 3,000 deaths in 1 day for the first time

On December 11, the United States Food and Drug Administration (FDA) issued an Emergency Use Authorization (EUA) for the first SARS-CoV-2 mRNA vaccine, BNT162b2, manufactured by the pharmaceutical giant, Pfizer. For a description of how mRNA vaccines work, please check our last update available here. The New York times reported that large-scale manufacturing and distribution of vaccines has already begun, with the first dosing to start on December 14, 2020. This huge milestone is a positive step towards fighting the COVID-19 pandemic. However, it is important to keep in mind that it will take a considerable amount of time before the entire US population is either vaccinated or immune to COVID-19 through natural infection. With the year-end holidays around the corner and an anticipated increase in travel, the CDC has extended its travel advisory to include the winter break. We encourage our community members to weigh the risks and benefits of travel during this winter. Thanks to the vaccine, the end of the pandemic may be on the horizon. Till such time, maintaining public health measures such as masking, handwashing, social distancing, and minimizing non-essential travel are our best bets for protection.

How was the Pfizer vaccine approved?

The vaccine was approved based on a randomized, double-blind Phase 2/3 clinical trial. A total of 43,548 participants (older than 16 years) received either two doses of the vaccine or a placebo injection three weeks apart. Participants were followed for safety and for the development of symptomatic COVID-19 for approximately 2 months. Eight participants in the vaccine group developed symptomatic COVID-19, whereas 162 participants in the placebo group developed symptomatic COVID-19. The vaccine was found to be 95% effective in preventing severe COVID-19 symptoms i.e., for every 100 people who received the vaccine, 95 were protected from developing severe COVID-19.

Is the Pfizer vaccine safe?

Side effects reported by trial participants were generally mild or moderate, and reactions were less common and milder in older adults than in younger adults. Those who received the vaccine had localized reactions at the injection site (pain, redness, swelling) and systemic reactions (e.g., fever, headache, muscle ache) at higher rates than placebo recipients, with more reactions following the second dose.  Severe fatigue was observed in approximately 4% of vaccine recipients. However, this rate of severe fatigue is also lower than that observed in recipients of approved influenza vaccines for older adults. Serious side effects were similar in both the vaccine and placebo groups (0.6% and 0.5%, respectively).

It is important to keep in mind that we do not have long-term follow-up data from this clinical trial. Sometimes, side effects may show up after months of follow-up. Also, vaccination began in the United Kingdom last week. Two individuals with a history of severe allergic reactions were reported to have had a severe reaction to the vaccine. These individuals carried an EpiPen and use of the pen was sufficient to counteract the allergic reaction. It is anticipated that these reactions will be very rare given that such safety issues were not seen in the large clinical trial. The public health benefits of distributing this vaccine still far outweigh any perceived risks.

What is not known about the Pfizer vaccine?

  1. We do not know whether the vaccine will be effective for more than 2 months, because participants have only been followed for 2 months so far. However, additional data continues to be gathered.
  2. Children (less than 16 years of age), pregnant women, and immunocompromised patients (such as those who have received cell-based therapies or chemotherapy for their cancer) were not included in the study. We do not know if the virus will be safe (in children and pregnant women) or effective (in immunocompromised patients who may not mount an immune response) in the groups excluded from the clinical trial.
  3. The vaccine involves two doses given three weeks apart. The first dose “primes” the immune system to respond while the second dose “boosts” that response. If someone misses the second dose, we do not know whether the vaccine will still be effective.
  4. We don’t yet know whether the vaccine will prevent the recipient from getting infected or from spreading COVID-19. Again, we need more data. We’ll need to continue practicing public health measures such as masking and social distancing even after receiving the vaccine, at least in the near term.

When will I receive the vaccine?

The United States is adopting a phased approach to roll out large-scale vaccination. The phased approach prioritizes the most essential and the most vulnerable of our population as the first recipients of the vaccine, given the initial limited supply of vaccines. The following figure shows how the state of Massachusetts will use the phased approach for distributing vaccines.  It is anticipated that patients with lung cancer will receive vaccines in Phase 1 or 2.

As of December 2020, the Advisory Committee on Immunization Practices (ACIP) recommended that both 1) health care personnel and 2) residents of long-term care facilities be offered COVID-19 vaccine in the initial phase of the vaccination program (Phase 1a).

Each state in the United States is likely to have specific vaccination guidelines tailored to their own specific needs. For information specific to your state, please check this link.

An important population for our community is caregivers to patients with lung cancer. If you are the primary caregiver for your loved one, please check your eligibility for receiving the vaccine.

This will be our last update of the year. We wish everyone a safe and peaceful Holiday Season! Please continue to maintain social distancing, wash hands, mask, and minimize non-essential travel. See you in 2021!

Resources and websites

  1. IASLC’s Guide to COVID-19 and Lung Cancer
  2. The National Cancer Institute has a special website for COVID-19 and emergency preparedness. COVID-19: What People with Cancer Should Know
  3. Updates provided by the World Health Organization (WHO) and the US Centers for Disease Control and Prevention (CDC)
  4. Johns Hopkins COVID-19 Resource Center
  5. Interactive map of US COVID-19 cases by state
  6. COVID-19 in patients with cancer: managing a pandemic within a pandemic
  7. You can find information specific to your state or city or town on your health department’s website.
    • Directory of state department of health websites
    • Directory of local health department websites
  8. American Medical Association resources for healthcare providers.