Janet Freeman-Daily, Lung Cancer Advocate

Cure Forward is honored to have Janet Freeman-Daily as a guest on our monthly #CureChat.  Our team had a chance to interview her about her lung cancer diagnosis and her important work as a lung cancer advocate.

You are a Lung Cancer Advocate.  Can you tell us a little bit about your journey?

I was diagnosed in May 2011 with advanced lung cancer.  Despite two lines of traditional treatment (chemo and radiation), my cancer became metastatic.  Fortunately, knowledgeable patients in online communities told me about molecular tumor testing and clinical trials.  I used the information they shared to obtain broader genomic testing for my tumor, and learned my cancer was driven by a genomic alteration called “ROS1.”  I enrolled in a targeted therapy clinical trial in November 2012, and have had no evidence of disease since January 2013.  I feel I owe a tremendous debt to the patients, clinicians, and researchers who enabled me to live with metastatic lung cancer as a chronic illness instead of a death sentence. I became a lung cancer patient/activist so that I could help other cancer patients become empowered and learn the  options available to them.  I also aim to help educate healthcare providers and researchers about the patient experience, and promote more research and improvements in patient care.

What is the biggest challenge facing the lung cancer community today?

The lung cancer community faces several challenges. I’d say the greatest challenge for patients is obtaining information about and access to the best standard of care for their lung cancer, as well as precision medicine clinical trials.  Most community cancer care professionals have a tough time keeping up with all the changes in standard of care for lung cancer.  In just the past few years, new options have been approved for early detection (lung cancer screening with low dose CT scans), molecular tumor testing, and treatments (e.g., targeted therapies, stereotactic  radiation for brain metastases, and minimally invasive lung surgery) — the FDA has approved new or expanded uses for 12 lung cancer drugs alone.  Patient access to cutting edge clinical trials is also a challenge. 

What’s your experience with Clinical Trials?

I’m currently taking an oral targeted therapy for my ROS1-positive lung cancer as part of a clinical trial.  I joined the trial in November 2012.  My cancer drug is now FDA approved, but the trial is continuing because the drug received accelerated FDA approval and needs to complete more testing to get final FDA approval.  The clinical trial staff has always been amazingly knowledgeable and supportive, and I continue to receive the best standard of care at an academic cancer center.  I pay only the insurance copays I would have paid if I had been treated by my community physician, although I do also have to cover the cost of travel for my particular trial (what patients must pay for participating in a trial will vary depending on the trial’s design and their insurance coverage). I consider this a fair trade, since I get my expensive cancer drug at no cost, and receive treatment from one of the world’s top experts for my type of cancer.  For advanced stage cancer patients with deadly cancers like mine, clinical trials are a reasonable treatment option given all the new immunotherapy and targeted therapy drugs that are available only through clinical trials.  My trial has given me additional years with good quality of life.  Even if I hadn’t had such great results, I would consider my participation worthwhile because I’m contributing to research that may help other patients in the future.

What’s one piece of advice you’d offer to a newly diagnosed cancer patient?

Become an engaged patient, an active member of your healthcare team.  For starters, this means make sure your cancer diagnosis is confirmed by a specialist in your type of cancer, and your treating doctor is knowledgeable about the newest treatments for your type of cancer.  Especially if you are diagnosed with advanced or metastatic cancer, get a second opinion from an academic cancer center that is familiar with the most recent standard of care, the newest tests and treatments, and clinical trial options for your type of cancer. 

What do you think will be the biggest disruptor in the lung cancer clinical trials space in the next few years?

Online patient communities and social media promise to be the biggest disruptor for lung cancer clinical trials.  Patients and caregivers are sharing with each other their knowledge of clinical trials and research, and often know more about trial options than community doctors do.  This is especially true for precision medicine trials that use biomarkers to determine whether a patient is eligible– some online patient-caregiver communities for specific cancer types know clinical trial options before the data is published!

Any messages you’d like to share with our audience for Lung Cancer Awareness?

Raising awareness of lung cancer and the associated stigma during Lung Cancer Awareness Month isn’t enough.  We must also make people aware of the HOPE that research, new treatments, early detection, and clinical trials are providing to many lung cancer patients.  Lung cancer is no longer an automatic death sentence.  Thanks to lung cancer screening and precision medicine, some patients are living years longer than they would have if they were diagnosed in 2010. We need to share that message all year.

Can you share your social media profiles for us to share with the Cure Forward community?

Blog:  Grayconnections.net

Twitter: @JFreemanDaily

Facebook: Janet Freeman-Daily

 

Join us on January 12th, 2017 at 1 PM ET on Twitter for our #CureChat conversation with Janet!

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