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.

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.

Patient participation in #NACLC20 virtual lung cancer conference

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)

Sep 21, 2020 Update to the Joint Statement on #Coronavirus #COVID19 From #LungCancer Advocacy Groups

 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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As of September 18, 2020, the US has had 6.7 million cases of COVID-19, with just over 198,000 deaths. The Midwest is leading new cases, with 8 cities in Wisconsin appearing on The New York Times list of the 20 metro areas with fastest-growing cases.

With the run-up to the US Presidential election now less than two months away, recent weeks have seen a growing national dialog on the potential availability of a SARS-CoV-2 vaccine. In this week’s update, we want to review some basic concepts on vaccines, the clinical trials process for ensuring vaccine safety and provide an update on the current status of the various vaccine candidates currently under development.

 

What is a vaccine? How long do vaccines last?

 In the most basic terms, a vaccine is a substance that can stimulate the body’s immune response to provide protection against diseases caused by different viruses and bacteria. Some vaccines provide potentially life-long protection (measles) while others provide long-term protection but still require periodic “booster” shots (tetanus being a classic example). Still others require annual vaccination because of the nature of the virus – influenza virus (that causes “flu”) undergoes changes from year to year and so the formulation for the vaccine changes each year to accommodate these changes and offer the best protection possible.

(PSA: don’t forget to get your flu shot this year!)

 

How are vaccines tested?

Everyone feels a great sense of urgency to develop a vaccine for SARS-CoV-2 so we can think about returning to some degree of “normalcy” in our daily lives. A concerted global effort is currently underway not only to develop a safe and effective vaccine but to develop other treatments as well (including so called monoclonal antibodies as well as novel antiviral treatments). In the US, the administration has developed what it refers to as “Operation Warp Speed” to try to accelerate vaccine development.

Without getting into a political debate, we want to offer a brief overview of what goes into getting a vaccine approved. Specifically, once a candidate vaccine is identified, its safety and efficacy (how well it works) must be validated through a rigorous clinical trials process as shown in the schematic below:

 

For a great overview of how vaccines are developed, the different types of vaccines, how they are tested and the status of current efforts to develop a SARS-CoV-2 vaccine, we refer you to an excellent resource put together by The New York Times.

 

Vaccine Safety

Historically, the United States Food and Drug Administration’s Center for Biologics Evaluation and Research (CBER) has been responsible for regulating vaccines in the US.  Recently, the scientific integrity of both the FDA and the Centers for Disease Control and Prevention (CDC) have come into question over fears that they may be rushing vaccine development in the interest of political expediency. Because of this concern, many of the pharmaceutical companies at the forefront of the effort to develop a SARS-CoV-2 vaccine signed an unprecedented pledge affirming their commitment to vaccine safety.

Politics aside, the scientific community must ensure any potential vaccine is both safe AND effective before it is approved and administered to the public. Past experience with the development of SARS and MERS (Middle-Eastern Respiratory Syndrome) vaccines has taught us that coronavirus vaccines need thorough testing. A recent incident that occurred during the Phase 3 clinical trial of AstraZeneca’s vaccine candidate highlights why vaccine safety is paramount. The initial lack of details about the nature of the incident raised concerns about lack of transparency by the drug companies developing these vaccines. In response to mounting pressure, several of the leading contenders have made their protocols public.

 

Hope on the Horizon

 Despite the challenges associated with developing an effective vaccine against SARS-CoV-2, there are several reasons to be hopeful:

  • The science is advancing at a historic and unprecedented pace. Previously, the fastest vaccine ever made (against mumps) took four years to develop.
  • We have access to novel vaccine development platforms and also experience with coronavirus vaccine development with SARS and MERS. Scientists are building on this pool of available knowledge to develop a vaccine against SARS-CoV-2.
  • We have gone from first identifying a novel virus (SARS-CoV-2) as the cause of COVID-19 (Dec 2019) to having the sequence of the viral genome (Jan 2020) and the pursuit of multiple, compelling vaccine efforts within the span of only six months.

 

Resources and websites:

  1. IASLC’s Guide to COVID-19 and Lung Cancer
  2. National Cancer Institute website “Coronavirus: What People with Cancer Should Know
  3. We are following 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. The One-Two Punch: Cancer And COVID-19 (an important perspective for cancer patients)
  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

GO2 Foundation for Lung Cancer (Amy Moore, PhD – amoore@go2foundation.org)
LUNGevity Foundation (Upal Basu Roy, PhD, MPH – ubasuroy@lungevity.org)
Lung Cancer Foundation of America (Kim Norris – KNorris@lcfamerica.org)
Lung Cancer Research Foundation (Cristina Chin, LMSW, MPH – cchin@lcrf.org)
LungCAN (Kimberly Lester – kimberly@lungcan.org)

 

Sep 8, 2020 Update to the Joint Statement on #Coronavirus #COVID19 From #LungCancer Advocacy Groups

 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.

—————————

We hope that all of you had a peaceful Labor Day holiday.  This week marks the six-month anniversary of when the World Health Organization declared COVID-19 a global pandemic (March 11). As of September 7, 2020, cases in the US have surpassed the 6 million mark, with over 186,000 deaths.

Nationally, new cases appear to be on a decline but pockets of high COVID activity remain. The figure below shows which states have the most new daily cases and the relative degree of community spread versus containment of the virus:

 

 

PSA: Get your flu shots!

 With the arrival of September, we are strongly recommending that all eligible patients and caregivers get their annual flu shot this year! Public health experts are particularly concerned about the potential for patients to get infected with both influenza and SARS-CoV-2 this winter. Additionally, since the symptoms for these two viruses are similar, many patients experiencing flu-like symptoms may flood already overtaxed healthcare systems. Many doctors’ offices and pharmacies already have flu shots available. It’s also important to remember that it takes approximately two weeks from receiving the shot to have adequate protection. So please make a plan to get your shot as soon as possible.

Some patients, particularly those on checkpoint inhibitors, may be concerned about whether they can take the flu shot – we always recommend asking your doctor but previous studies suggest that it is safe for patients.

 

We want to hear from you!

We are interested in knowing what topics we should cover in future updates. Please share your thoughts with us by taking this short (1-2 minute) anonymous survey.

https://www.surveymonkey.com/r/LungAdvocacy_COVID19_needs

 

Resources and websites:

  1. IASLC’s Guide to COVID-19 and Lung Cancer
  2. National Cancer Institute website “Coronavirus: What People with Cancer Should Know
  3. We are following 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. The One-Two Punch: Cancer And COVID-19 (an important perspective for cancer patients)
  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

GO2 Foundation for Lung Cancer (Amy Moore, PhD – amoore@go2foundation.org)
LUNGevity Foundation (Upal Basu Roy, PhD, MPH – ubasuroy@lungevity.org)
Lung Cancer Foundation of America (Kim Norris – KNorris@lcfamerica.org)
Lung Cancer Research Foundation (Cristina Chin, LMSW, MPH – cchin@lcrf.org)
LungCAN (Kimberly Lester – kimberly@lungcan.org)