On Sunday, June 28th, our organization, LUNGevity Foundation, teamed up with the Patient Empowerment Network and the Robert H. Lurie Medical Research Center of Northwestern University to host a lung cancer town hall meeting. The room was full with over 100 lung cancer survivors and caregivers, while dozens more watched live online from across the country.

The meeting was meant to be educational—a chance for survivors and caregivers to learn more about their disease, what the future looks like, and how medical professionals work with their lung cancer patients. Sitting on the panel were experts in the field of lung cancer treatment and advocacy: Malcolm DeCamp, MD, Chief of Thoracic Surgery, Robert H. Lurie Comprehensive Cancer Center of Northwestern University; Paul K. Paik, MD, Medical Oncologist, Memorial Sloan Kettering Cancer Center; Sarah Rosenbloom, PhD, Licensed Clinical Psychologist, Robert H. Lurie Comprehensive Cancer Center of Northwestern University; Mary Ellen Hand, RN, BSN, Nurse Coordinator, Rush University Medical Center; Katie Brown, Certified Patient Navigator, Vice President of Support and Survivorship Programs, LUNGevity Foundation; Janice DeArmas, 7-Year Squamous Cell Lung Cancer Survivor and Patient Advocate.

But something more came out of the meeting—empowerment.

The first time I witnessed this was during lunch. I grabbed a spot at a table with five ladies without knowing any of them in advance. I’ll admit, they looked like a hoot, so I thought it would be a really fun table to sit at. I wasn’t disappointed.

After introducing ourselves, we learned that none of us knew each other before that moment. You would expect awkward silences and mild conversation, but this group was eager to meet fellow survivors such as themselves. They bonded instantly. Talking openly and candidly, they gave advice and shared their personal experiences. You could almost see lights click on as they learned about things that they had never thought of—or maybe never felt comfortable enough asking their own medical team. Within this group, they could ask those important questions and get answers. Looking around the room, I observed other groups having the same positive experience.

Back in the lecture hall, the speaker panel opened up for Q&A from the online and in-person audience, and I experienced this empowerment a second time. It occurred through the simple process of speaking openly and asking questions.

Survivors wanted to know more. Some asked the hard questions. Some shared their experiences and what they learned from the day. Some shared their fears and frustrations. The opportunity to talk about living with lung cancer surrounded by over 100 people who could understand and relate was powerful.

The panel did a wonderful job of providing relevant information for survivors and caregivers to take home with them. And that was the point of the day: to empower every survivor with resources to better communicate with their own medical and support teams; to ask the important questions and seek the best support.

Please check out the resources from the town hall meeting on the Patient Power website, as well as those available on the LUNGevity website. By taking these simple steps, you too will become empowered.

John Ratzenberger

When I first posed that question, I thought it would be easy to start a conversation. Yes! Let’s talk about lung cancer—the deadliest, most misunderstood and least funded cancer. But where do I go from there? Jillian was our baby. Even though she had been living and supporting herself in Miami as an RN at Jackson Memorial Hospital’s Neuro Surgical Intensive Care Unit, going back to school and dating. Everything was according to plan. In June of 2012, at age 28, Jillian was told she had cancer. And in July, she was told she had lung cancer, stage IV. When Jillian was first diagnosed, we were all in disbelief—so much so, that we didn’t know the first question we needed to ask: How does this young, healthy, active woman get this terrible disease? And afraid to ask the one we didn’t want to face: how much time do we have with her?

Back then, I didn’t know there was a Lung Cancer Awareness Month (November) or even a World Lung Cancer Day—August 1st. Getting back to the initial question: can we talk about lung cancer? The whole world should be talking about lung cancer on Saturday. It should be on everyone’s posts, tweets and snaps. As a part of this unfortunate bonded community, we should be hitting everyone and every source we know to tell them some basic, uncomfortable facts about lung cancer and how we have come to form this community. It’s World Lung Cancer Day. Let’s raise awareness!

Let’s talk about lung cancer funding—or lack thereof. Since 1972 when President Nixon signed the National Cancer Act into law, why is it that lung cancer still is underfunded even though it has the highest mortality rate? Why is it that as cancers go, lung cancer still doesn’t have a test for early screening for everyone who may be at risk? We know what early screening tests have done for breast, colon and prostate cancers—and the prognosis for those cancers has improved greatly. It goes against every natural law that parents should lose a child. It’s so hard when the loss is from a cancer that is largely ignored and where people’s perceptions remain that they brought this on themselves and therefore don’t deserve clinical trials, treatment options and a lifetime. I can’t tell you how many times I’ve said “I lost my daughter to lung cancer” and the first thing said back to me is: “She was a smoker?” AGHHHHHHH!

So, let’s talk about lung cancer. The thinking was/is that most people who get lung cancer 1) are smokers or former smokers. False; 2) are older than 55. False; 3) smoked at least 1 pack a day for 30 years! False. Anyone can get lung cancer. Until Jillian’s diagnosis, I was in that group that thought those same things. Because of Jillian, I know better. Getting back an earlier question: how does a young, healthy, active woman get the deadliest, most misunderstood and least funded cancer? I don’t know and I wish I did.

With Jillian’s passing in May 2013, I started doing something I never thought I’d do. I became her voice. I needed to tell her story. Then I found I had to do more and started to do something about the status of lung cancer. Let’s face it—it’s at the very bottom of the list. We don’t fund lung cancer like the other major cancers. It isn’t fair or even understandable. How do we move from this to change? How do we take our anger, fears (that elephant in the room) and frustration and turn that into action? I found that what worked for me was reading, researching and talking to people, doctors and advocates. I knew that what Jillian started by participating in a clinical trial was where I needed to follow. Funny how we sometimes learn the greatest lessons from our children. She taught me more about strength, courage and determination in her 10-month battle than I knew at the time. Jillian knew, well before she moved home, what her prognosis was. That’s probably why we never asked how much time we had. In paying my lessons learned from Jillian forward, my voice began quietly, slowly and is evolving. I wanted to help change the face of lung cancer and start a conversation about what the lung cancer community needs: awareness, education and funds. With that will come new discoveries, better treatment options and one day a cure. In the short two years since Jillian’s passing, so much has happened. There are new discoveries: targeted therapies, precision medicine, new drug combinations and immunotherapy. And that’s just the tip of the iceberg.

What better time to start a conversation than on World Lung Cancer Day! So, let’s talk about lung cancer. How do you think patients can affect a change? Tell me in the comments section.

Stronger than lung cancer,

Ros Miller

There has been a healthy discussion following my most recent blog entry, and, once again, we have learned much from each other. It’s important to remember, first of all, how much we have in common as we progress with our treatments. We are not alone.

As I noted in my previous blog, we are often dealing with a nebulous set of symptoms (fatigue, sweats, and decreased endurance) that lead to frustration over what we can no longer accomplish. One of our commenters referred to fatigue in particular as a “life-stealer,” which is the best description I’ve heard.

Can we take something away from this shared experience that we can use to help us cope with this wreckage? I believe we can.

First, we need to understand what symptoms really are: your body informing you that something is up. There is a real utility in this mechanism, for example, when pain occurs after you have broken your leg. Acutely, it tells you to avoid further injury and to seek stabilization of the fracture. Ongoing pain for weeks after the fracture reminds you to keep it immobilized so that it can heal. Unfortunately, once it has been definitively placed in fixation, the pain is no longer as helpful. In fact, pain can lead to excessive disability, preventing us from enjoying life, and necessitating the use of powerful medications that have their own nasty side effects. Symptoms are both useful and detrimental.

Looking at fatigue the same way, there are benefits and risks to ongoing fatigue. Certainly, fatigue can help you by reminding you to pace yourself and not place further demands on your taxed body. However, fatigue can rob you of a great deal of joy in your life. I have noted how frustrating and dismaying it is to simply not be able to perform. Some of our blog responders have said the same thing. There is a sense of guilt over the impact of this disease on the patient’s family, particularly children. How to tell your son that you just don’t have the energy to get to the park?

Everyone has their way of coping that may work for them. Some days, I haven’t the juice to read the mail. But I have found some solace from an unexpected source—I exercise. Some responders have noted that exercising on one day can really make their subsequent days even worse. My own experience has been that exercise often increases my energy level that day and makes my subsequent day no worse than I believe it would have been. When I exercise it reminds me of what I can do, and makes me feel less like a victim. I often sleep better that night, sweats or not.

Of course, one person’s exercise is another person’s heart attack. What I mean by exercise can mean a walk around the block or going to the mall for essentials, like chocolate and new slippers. If at the end of a session you find yourself asking, “I did little. What have I accomplished?” The answer is: more than you would have done if you had not done anything. There is no downside here, especially if you’re already fatigued. Whatever you choose to do should be something you enjoy. One of my buds at the clinic has a regular gig of driving his car down to the beach and surf fishing for an hour or two. It may not sound like much, but he gets out, has to carry some light tackle a few hundred yards, and sit on a campstool for a while. Not exactly a triathlon but plenty for him. As an added bonus, when he recently got a sinus infection he knew immediately, because he was really struggling with what had become his new routine. He got into the clinic and got help immediately.

A major concern with pushing past your symptoms is that you may hurt yourself or further your disease by exercising. Everyone’s disease is different, and so it is impossible to say one way or the other. Between your ears, however, where your perceptions are formed, you have a major opportunity. Stress is often linked to our ability to control our environment, and in the case of disease, to find a way to turn a setback into an opportunity. If you look back upon an event in your life and see nothing but uncontrolled loss, you’re not doing yourself any favors. Find a way to take your victimhood and turn it into a struggle and then an opportunity. You may find yourself eating better, exercising more—and appreciating life more—after your diagnosis than before.

I am no Pollyanna here. Loss is a part of life, but we can control how that loss affects us and how that, in turn, affects the ones we love. These symptoms can rob us of our joy for life if we permit them to. Exercise in even a small amount has great benefits. Next time, we can elaborate on this and talk about other coping strategies.

What are your CLL symptoms? Let me know in the comments section what steps you take to manage your symptoms, and how you have met the challenge and found new opportunities.

Until then, be well!

Sincerely,

Randall Goskowicz, MD, CLL Patient

 

Advocates and physicians join forces to educate patients at a recent town meeting.

Advocates and physicians join forces to educate patients at a recent town meeting.

I’ve produced educational programs for patients since 1984, and the amount of support has been very limited year after year. Traditionally, dollars for education have been spent on doctors. But in today’s digital world where patients are clamoring for more control, should more resources be moved to more robust programs for patients? I vote yes.

Right now, on our independent website, and several others and a wide range of social media, patients are trying to “get smart” to do better with their diagnosis. A recent Patient Power survey shows 80 percent of the time people discuss what they learn here with their doctor, and 20 percent of the time it adds new treatment options to the discussion. In other words, patients are instigators for positive change when we receive and analyze credible information. We are the people living with the condition. We can make a strong case when we learn about new approaches that are truly right for us. So if we increasingly have influence, why should educational grants from pharma for patient program be so limited?

It seems to me that if you want quicker adoption of new therapies, or quicker enrollment in clinical trials, you not only need a smarter doctor, you need a smarter patient.  This is obvious, but for most companies this idea is seen as appealing but not do-able. How come? Why can’t the CEOs of pharma companies, who say they are making their companies “patient-centric” really “put their money where their mouth is” and in a sustained, meaningful way?  Obviously, there are positive exceptions, and those have tended to be sustaining sponsors who you see here. And they welcome their competitors to join in. That’s modern thinking. But we have a long way to go.

Fortunately, we disruptors in the patient education space are harnessing digital technologies, which are relatively cheap. Since we do not operate under the control of anyone, we just bull ahead and tell the stories that we believe can help patients and loved ones. Could we do more with more support? Yes. Should that support be allocated in a bigger way? Yes. I recognize the pharma industry is old and stodgy and regulated. They are used to educating doctors who write prescriptions. And for years that was the end of it. But now it is time to rethink where dollars are spent because, more and more, patients are very influential for themselves and for others.

What do you think? How can funds be best used to educate and support patients? As always, I welcome your comments.

Wishing you and your family the best of health!

Andrew

I am gratified by the excellent feedback I received from the first edition of this blog. There are so many thoughts I want to follow up on with future discussions. Today, I’m going to continue with my own story as a further illustration of what we all have in common. The first order of business […]

Read Article

Like every CLL/SLL patient, I have a unique story, and I’d like to share it with you. Perhaps my background as an MD and researcher will permit me to add something to the discussion. I am no expert on oncology as my field is anesthesiology, but I know how to read scientific papers. And I […]

Read Article

For 10 months, I didn’t want to talk. When I did, I asked questions—lots of questions. I was better at note-taking and writing to myself than talking. As a daughter, wife and mother, I had different voices: “What time is your doctor appointment, Dad?” “How was your day, honey?” or “Did you get all your […]

Read Article

Wear To Now was conceptualized in honor of my late grandmother, Hada Bejar Garcia, who lost a two-year-long battle to stomach cancer on March 1, 2014. Growing up as the daughter of famous Spanish actors, she spent her childhood acting and greeted fame in her early teen years—beautiful and talented, many referred to her as […]

Read Article

Carpe diem! Rejoice while you are alive; enjoy the day; live life to the fullest; make the most of what you have. It is later than you think. — Horace If you live in the contiguous 48, you know few things are as exciting as freshly fallen snow. I remember as a 4-year-old making my […]

Read Article

Editor’s note: This blog originally appeared on the site of our partner, the Patient Empowerment Network. When my kids were little, I loved reading to them Arnold Lobel’s Frog and Toad books including “The Corner” in Frog and Toad All Year. In it, Frog assures Toad on a cold, rainy day that spring is just around the corner. […]

Read Article
August 2015
M T W T F S S
« Jul    
 12
3456789
10111213141516
17181920212223
24252627282930
31  
Older Reset