#CureChat: A Conversation With Janet Freeman-Daily About Precision Medicine and Clinical Trials

In our next #CureChat, we continue to explore the world of clinical trials from the perspective of a patient who has been there.

If, as a patient, you’ve never been a part of a clinical trial you might wonder what it’s like to make the decision to join one. You might also wonder what it’s like to participate in one. Beyond that, you might wonder what skills you might need, or what it takes to advocate for yourself to make the most of the journey. We’ll explore those questions and more on this month’s #CureChat, as we go behind the scenes with Janet Freeman-Daily, inspiring writer, speaker, lung cancer patient/activist, and all-around science geek.

Image courtesy of Janet Freeman-Daily

Image courtesy of Janet Freeman-Daily

Janet was diagnosed with advanced non-small cell lung cancer in May 2011 at a medical center in Seattle. After two chemotherapy regimes, two radiation protocols, and progression to Stage IV, she used information obtained in online patient communities to get her tumor tissue tested for newer molecular markers and find a precision medicine clinical trial in Denver. She has been in the same trial for four years and has had No Evidence of Disease since January 2013.

After applying her MIT and Caltech engineering degrees to a career in aerospace systems engineering and new business for two decades, Janet now is a patient activist who employs her communication skills and science background to translate the experience of lung cancer treatment and research for others. She is an invited speaker at oncology and medical conferences and participates in patient-driven research.

She blogs at grayconnections.net, co-moderates #LCSM (Lung Cancer Social Media) Chat on Twitter at @JFreeman-Daily, loves science fiction, and is owned by two cats, Admiral Doofus and General Nuisance.

To learn more about Janet’s story, please see her blog post “A Lung Cancer ePatient Story.” Also, make sure to check our team’s interview with Janet: “Janet Freeman-Daily, Lung Cancer Advocate.”


Chat Topics:

T1. Janet Freeman-Daily’s Story In the first part of the chat, we’ll yield the floor to Janet who will tell us her inspiring story 140 characters at a time. Then we’ll move on to the discussion to explore the following topics:

T2. What does the term “precision medicine” mean to you and how does it connect to clinical trials?

T3. Tell us about the ROS1 Mutation.

T4. What were your biggest fears and misconceptions about clinical trials before finding out about them via an online community?

T5. How did it feel to be accepted into a trial? What emotions, and why? And how did you manage them?

T6. What are some of the positive aspects of clinical trials that most people don’t know about?

T7. Please share some online resources where you find trustworthy info for lung cancer and clinical trials.


Please join us for this special #CureChat on Thursday January 12th, 2017 at 1 pm ET.