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