I was recently interviewed by Priya Menon for Cure talk. Cure talk is one aspect of trialx, a website devoted to clinical trials which is also home to Dory, an interactive guide to help patients locate appropriate clinical trials.
As I am currently researching my own next best options (primarily so that I may ask more intelligent questions when I next meet with Dr. Shaw) I gave Dory a run through. Although disappointed that I could not refine my search so that it was limited to ALK mutations, I did find a trial for an HSP-90 inhibitor that I was previously unaware of.
Also, I perused the fine print, and I feel that the site is very up front about what kind of aggregate information it gathers and for what purpose. The interview follows:
Me: How did the idea of a lung cancer blog come about?
Linnea: My oncologist at the time suggested I write a blog. I had already been toying with the idea, and he knew I was interested in becoming more involved with advocacy. I believe he also felt the arc of my story–almost losing hope only to be ‘saved’ by an experimental therapy–could be inspirational to other patients with advanced lung cancer.
Me: How has your blog, ‘Life and breath: Outliving lung cancer’ helped you in your cancer management?
Linnea: Authoring the blog has helped me cope with my own diagnosis in more ways than I could have imagined. Initially, I felt that at the very least it would serve as a chronicle of my experiences, a small legacy for my children. I hoped the blog could be something more. As someone who had been the recipient of some very good luck; being in the right place (at a major hospital which supported innovative research) at the right time (a biopsy revealed that I had an ALK mutation just as a phase I clinical trial for the first ALK inhibitor was enrolling), I felt compelled to spread the news. It was my desire both to share some of what I was learning about my disease, but also to show that it was possible to not only live with a terminal illness, but to live well. This dual set of goals lent my life more purpose. In addition, some of those who read the blog began to leave comments and before long, I had a whole new network of friends and supporters. Having lung cancer can be a very isolating experience, but the blog has helped me to build a community, one which stretches around the globe.
Me: You have been fighting lung cancer for over 7 years now…you might be a witness to the progress of medical research in the field. Do you think enough is being done?
Linnea: From a patient’s perspective, there is never enough. That said; the study and treatment of lung cancer has been energized by the discovery of genetic mutations and emerging targeted therapies. VATS (video assisted thoracic surgery) is, in many cases, replacing the traditional lobectomy, resulting in a shorter recovery period. Chest CT scans are now acknowledged as superior to x-rays in screening for lung cancer in those at risk. Advocacy groups have lobbied heavily to have more research dollars earmarked for lung cancer, and their efforts have paid off; the Department of Defense has allocated funds for lung cancer research for the past three years. Sadly, even with these positive trends, we are no closer to a ‘cure’ and the five-year survival rate remains a dismal 15-16%.
Me: You are a non-smoker. Has the stigma associated with smoking and lung cancer touched your treatment or life in anyway?
Linnea: Yes. When someone hears that I have lung cancer, they almost always ask if I smoked. It is a curious question. If I were to respond yes, would an awkward silence ensue? When I say no, I didn’t smoke, they usually shake their heads sadly. The unspoken implication is that if I did smoke, I may be responsible for my disease. As I am a non-smoker with lung cancer, it is clear I have just been unlucky. In other words, it is a query that is certain to make the person with lung cancer feel bad, whether or not they smoked. And, the reason people feel it is okay to ask is because of the strong association between lung cancer and cigarettes.
My status as a non-smoker has come into play medically as well. Had I been a smoker, I believe I would have been diagnosed at an earlier, more treatable stage. Instead, my symptoms, which included a chronic cough and shortness of breath, were attributed to adult onset asthma.
Me: What were your feelings when you decided to enroll in the Phase I trial of Xalkori?
Linnea: At that time, my health was failing; I had run out of reasonable treatment options. This was underscored by the fact that one possible course of action suggested by my oncologist was to do nothing more. When presented with an opportunity to enroll in the trial, I eagerly embraced it. I was well aware of the risks involved as well as the fact that a positive response was a long shot. However, if I did nothing, I would die anyway. Participation in the trial offered a sliver of hope, and as long as I had hope, my resolve to live strengthened.
Linnea Duff: Do not give up hope.
Me: What is your advice to lung cancer patients regarding clinical trials investigating lung cancer medications?
Linnea: The decision to participate in a clinical trial is a very personal one. The thought of being administered an experimental drug is unnerving to many. In truth, clinical trials can offer access to cutting edge treatments long before they are made widely available. And although there are attendant risks, each participant in a trial is monitored very closely. This careful monitoring extends to diagnostic tests, and as a participant, you become exceptionally well informed about the state of your health.
One of the most important questions to ask before considering a trial is whether or not it is ‘blinded’. Should that be the case, you will not know whether you have been given the experimental drug or a standard treatment. If you experience progression and are not in the experimental cohort, you will want to inquire as to whether or not you will have the option of then receiving the trial drug. Other important considerations are financial (will your insurance cover trial related expenses), accessibility to a trial site (are you willing to travel if it is not offered locally) and time commitment: particularly at the onset, there will be long days as well as more frequent appointments.
Me: Are you currently participating in any clinical trials of new drugs?
Linnea: Yes. I am currently enrolled in a second phase I clinical trial for a second-generation ALK inhibitor, Novartis’ LDK378. I have been on trial for more than six months now and hope to stay on as long as possible. However, should I experience significant progression; I will not hesitate to enroll in yet another clinical trial.
Me: You have been managing your terminal cancer for years now and are an inspiration to many. What is your advice to people being diagnosed with terminal lung cancer?
Linnea: First, if at all possible, seek treatment at a major cancer center. If your oncologist is well informed as to the latest research in regard to lung cancer, it will give you an edge on survival. Keep in mind that some patients travel long distances for consultations but are often able to arrange for treatment locally.
Be your own advocate. Learn as much as you can about your particular type of lung cancer. For instance, if you have adenocarcinoma, make certain you are tested for mutations. If you decide to use the internet for research, remember this: there is a lot of good information out there but it is easy to get overwhelmed: most of what you will read about advanced or terminal lung cancer is not encouraging. You are an individual, not a statistic.
Don’t try to go it alone; both physical and emotional support are often essential. In addition to family members and friends, consider joining a support group (available online as well). A diagnosis of lung cancer (at any stage) can be very isolating, and ‘networking’ with other patients can be a source not just of comfort, but also information. Most major hospitals will have social workers in thoracic oncology; they are there to lend support and can also be an excellent resource.
Understand that depression is a normal response to living with a terminal illness. It might be appropriate for you to seek counseling and/or to take advantage of ‘chemical support’; both antidepressants and drugs for anxiety are available.
Finally, stay hopeful and don’t forget to live and to make the most of every day. You can’t control what happens to you, but you can choose how to respond to it.
I thank Linnea for her time and am overwhelmed with her zest for life in spite of all hurdles. Thank you Linnea, for your wonderful words. Priya Menon