Improving Clinical Trial Design

Interview With Dr. Michael Thompson (@MTMDPhD), Medical Director, Early Phase Cancer Research Program, University of Wisconsin

Carol Preston’s interview with Dr. Michael Thompson discusses issues related to clinical trial design. The obstacles to good patient-centric clinical trial design are numerous. The informed consent is a text-only legal-type document containing difficult to understand verbiage. Instead, it should be more patient-friendly, with images, graphics and easy-to-understand instructions.

Patients are becoming more empowered and more aware of the issues and are speaking out and willing to participate to make clinical trial design more patient-friendly and effective. More patients are aware of trials and want to educate and inform others. Clinical trial design and informed consent need to be updated and made more efficient so that more patients will be able to easily consider clinical trial enrollment.

Check out the full conversation and the rest of Dr. Thompson’s ideas in the video below:

Improving Clinical Trial Design from Patient Empowerment Network on Vimeo.

Activating a Community of People Living With Lung Cancer

Screen Shot 2015-10-22 at 5.16.16 AMNovember is Lung Cancer Awareness Month, and although lung cancer is the leading cause of cancer death in the world, the disease has long been stigmatized, leading to a sense of isolation for people already struggling with the considerable upheaval of a lung cancer diagnosis. Many living with this disease have said that connecting with others who also have a lung cancer diagnosis can inspire them to learn to “live with lung cancer.”

 

LVNG With Program

Through a new program called LVNG With (pronounced “Living With”), AstraZeneca, with the partnership of three leading lung cancer advocacy organizations (Bonnie J. Addario Lung Cancer FoundationFree to Breathe, and Lung Cancer Alliance), are activating a community of people living with lung cancer and their loved ones, to share their experiences and inspire one another. More than 100 people with lung cancer and their loved ones contributed to the development of LVNG With by sharing personal stories about their emotional journeys with lung cancer and their everyday lives.

Richard, who was diagnosed with lung cancer in 2004, conveys a sentiment that we’ve heard from countless people who are living with lung cancer and who contributed insight to this program: “I never imagined myself being an advocate for lung cancer. But I really do feel I need to be a voice. There need to be people who can speak out for lung cancer and give other people hope.”

Initial elements of the LVNG With program include a web site (www.LVNG.com), printed quarterly newspapers and live events, all intended to activate and connect those within this underserved community. We intend to add social media elements, such as Facebook and Instagram,  to continue to activate a community of people living with lung cancer and their loved ones. These channels will serve as another forum to share personal stories, posts, and images, and to invite people to post their own.

Following are excerpts from the personal stories you can find on at www.LVNG.com.

Dann’s Story

Dann, who was diagnosed with lung cancer in 2006, shared the following on Emotions:

“It’s important to do things that you feel give you some control. It feels totally out of control to be given this diagnosis, but there are things that are within your control.

“Exercise is one of those. It’s a mood elevator. It also is helpful to do all of the things that you can do to influence your treatment. Choosing which treatment provider that you have, choosing who you are going to involve in treatment.

“I’ve found that on the one or two occasions when I went to appointments by myself, it was much more stressful. So having other people share the experience with you is important.

“I feel a lot more deeply and I have a lot more awareness of my feelings. My gratitude for everything around me has grown exponentially. Stopping to smell the flowers is not just one of those clichés. I stop and smell the flowers, I stop to appreciate a couple of words that my secretary said when I walked by or that the sun is out today.

“There is so much more that I appreciate.”

Deena’s Story

Deena

Deena

Deena, who was diagnosed with lung cancer in 2012, shares the following perspective on Friends and Family:

“My relationships have changed, especially with my children. They saw a crack in Mom that was unexpected. I’m more fragile now than I was before. I was always the tough one, the disciplinarian. I had no health issues at all. The diagnosis came out of the blue for all of us.

“Our grandkids live a bit further away and we used to not see them as often, but now we won’t miss out on anything. There was a birthday party for our granddaughter and because her brother came down with a fever everyone else decided to stay out of the ‘sick house.’ We showed up anyway. I wanted to be there for every birthday party she wants me to attend.”

 

If you know someone who is facing a lung cancer diagnosis or may wish to participate in a live event in 2016, please share LVNG.org as a resource. We plan to add new stories to the LVNG With web site on a regular basis. If you wish to contribute a story, sign up to keep in touch.

 

John McCarthy

John McCarthy

John McCarthy is VP, Global Commercial Excellence, AstraZeneca

Connecting to Cancer Patients Online

In the Empowering Lung Cancer Patients Town Meeting, Deana Hendrickson talks about how important it is to connect with other patients and advocates online. Connecting online to patients with your same disease allows you to make amazing and empowering connections. Check out the whole clip below as Deana explains:

Empowering Lung Cancer Patients Town Meeting from Patient Empowerment Network on Vimeo.

Using Social Media to Inform Patients in Real Time

Interview With Dr. Michael Thompson (@MTMDPhD), Medical Director, Early Phase Cancer Research Program, University of Wisconsin

Alongside interviewer Carol Preston, Dr. Michael Thompson explores some of the new and exciting technology utilized in healthcare and the benefits it presents. To make medical meetings and conferences accessible to all patients, real time feeds are used to “attend” meetings from around the world. The types of feeds available to patients include twitter feeds, blog posts, and even live streams with apps Meerkat and Periscope. This allows patients a valuable insight into what is happening at the national level and makes information easier to find when researching their disease. Watch the clip below as Dr. Thompson explains more fully:


[toggle title=”Using Social Media to Inform Patients in Real Time – Click here to see transcript” state=”closed”]

Content for item 1

[/toggle]

Using Social Media to Inform Patients in Real Time from Patient Empowerment Network on Vimeo.

The Conversation: Supportive Care for Lung Cancer Patients

Meg Maley, RN, BSN, hosts a panel discussion around the topic of supportive care for lung cancer patients. Dr. Eric Roeland, Assistant Clinical Professor of Medicine at UC San Diego, Niki Koesel, MSN, ANP, ACHPN, FPCN, Director of Palliative Care, Carolinas Healthcare System, Levine Cancer Institute, and Randy Broad, a 7-year lung cancer patient, join in the discussion.

Screen Shot 2015-10-22 at 5.16.16 AMThe participants discuss supportive vs. palliative care, explaining that palliative care is actually an additional layer of support for patients and families. Discussing palliative care at the time of diagnosis will help the patient learn about all options and will lead to the best quality of life for cancer patients.

The Conversation then turns to the healing vs. curing debate. Niki and Randy both agree that healing is individual and depends greatly on the patient’s situation and perspective.

The panel then discusses the patient experience during treatment for lung cancer, and the challenges involved. Discernible challenges for patients going through treatment, especially chemotherapy, are the fear of hair loss and the onset of nausea.

Niki then talks about cachexia: what it is, and how it can be treated. She further explains how cachexia can be a heavy burden for patients and caregivers, and references several treatment options such as medications, energy conservation therapy, and cognitive behavioral therapy.

The Conversation concludes with all participants agreeing on the importance of communication and shared decision-making with the medical team.

Watch and listen as these esteemed participants discuss topical issues in Supportive Care for Lung Cancer Patients.

The Conversation: Supportive Care for Lung Cancer Patients from Patient Empowerment Network on Vimeo.

Why So Few Adults in Clinical Trials?

Interview With Dr. Michael Thompson (@MTMDPhD), Medical Director, Early Phase Cancer Research Program, University of Wisconsin

In Carol Preston’s interview with Dr. Michael Thompson, he states that about 60% of children participate in clinical trials, but only 3-5% of adults do. So, the question becomes, why are there so few adults participating in clinical trials? What are the adults afraid of? Dr. Thompson goes through some of the reasons why adults do not participate as much in clinical trials as much as children:

  • Patients do not qualify for the available trial
  • Patients believe trials require more testing, resulting in more travel and higher costs
  • Patients think trials may require too much effort on their part
  • Many patients distrust clinical trials
  • Patients don’t believe in the drugs
  • Many patients are not even aware of available clinical trials
  • Patients are afraid of receiving a placebo
  • Patients are afraid of having adverse side effects from the medication

Check out the full video below as Dr. Thompson further discusses this topic and how trial enrollment statistics could change through patient education and engagement. If cancer patients are informed about what clinical trials could offer them, or if they are able to ask questions, more adult patients may be more willing to participant in these trials.

Why are Patients Afraid of Enrolling in Clinical Trials- from Patient Empowerment Network on Vimeo.

Words of Advice from a Lung Cancer Survivor

Screen Shot 2015-10-22 at 5.16.16 AMWhen I was diagnosed with lung cancer, it was a shock. It was like a fist to the stomach- and it turned my life and my loved ones lives- upside down.

My world changed immediately and drastically. But I had to learn quickly not to let fear, shock, anger or distress keep me from advocating for myself.

I learned very quickly that you have to be your own champion.

So, how does a lung cancer survivor best advocate for themselves?

  • Never take no, or inaction (a form of “no”), as the final answer. Keep fighting. Your life is the most important to YOU! Don’t give up. If one doctor tells you to give up, find another. Keep fighting.
  • Research your doctor. What do others say about him? Where was he educated? Is he interested in research? Is he with a private practice or a university hospital?
  • Not all treatment facilities are created equally. The US News and World Report publishes a list of best hospitals every year. The National Cancer Institute designates certain hospitals that have been proven to deliver cutting-edge cancer treatments to patients. Other hospitals also deliver excellent services, but if you are uncomfortable with the treatment you are receiving, keep looking for a facility in which you have confidence.
  • You know your body best. If something doesn’t seem right, make sure your doctor knows. And takes it seriously.
  • Keep in mind that your oncologist works for you. If, at any moment you decide he is not doing an adequate job for you, fire him. You do not have to continue trusting your life to him if he loses your faith. Your medical team holds your life in their hands. Find the ones you trust completely.
  • Conduct your own research. Look at respected sites, such as LUNGevity, American Association for Cancer Research, Bonnie Addario Lung Cancer Foundation, American Cancer Society, American Lung Association, the National Institutes of Health (NIH), etc. Make sure that you can differentiate between opinion and vetted study results. If you are aware of what is out there, you can advocate for yourself. Unfortunately, not every doctor knows what all of the latest treatments are.
  • Start a binder or a file where you keep important test results and copies of your scans. List questions for your doctor so you don’t forget when you get into his or her office.
  • Take along a friend or family member to doctor visits. Two sets of ears are better than just one, especially if you receive some shocking news during the appointment.
  • Join support communities (in-person or online or both). It helps to spend time with others who “have been there, done that.”
  • One of the best organizations that I have associated with since my diagnosis is LUNGevity. It is dedicated to funding research for lung cancer and to providing HOPE to all lung cancer survivors. If you want to spend time with others who have lung cancer and exude HOPE, get involved with LUNGevity!
  • Spend time spreading the truth among your friends and acquaintances! Unlike what the general public, and unfortunately, even many doctors, believe, lung cancer doesn’t just happen to smokers. It doesn’t matter if you smoke or don’t, are white or black, male or female, young or old, skinny or fat. Lung cancer happens to people with lungs.
  • Try to maintain as normal a life as you can. Eat as healthily as possible. Drink plenty of water. Exercise as much as you are able. Smile, even if you don’t feel it. Watch happy movies and laugh. Cancer is an awful disease and none of us want it. But, it doesn’t have to consume your every thinking moment. And, it shouldn’t.

It is hard enough to be diagnosed with cancer. But, when you are diagnosed with lung cancer, it is a double whammy. The misconceptions and stigma that are associated with lung cancer can make people look down on you or discount the importance of your disease and your fight.

lung cancer survivor

Donna is now a stage 4 lung cancer survivor.

Keep your head up. Whether or not you have a smoking history, everyone deserves quality treatment and compassion. No one deserves to die from lung cancer; no one deserves to be looked down upon because of lung cancer. Set aside any feelings of shame or guilt or if you never smoked, the question “why me”.   Become a champion for yourself.  And remember, there is hope.

My story is a story of hope.

Yours can be too!

Caregiving Tips

Editor’s note: Stella is the care partner of Len, a CLL patient. They both participated in the September session of the Patient Café™ that talked about clinical trials. I had asked Stella for some caregiver tips to share, and she proposed the list below.

Stella’s List

Being the caregiver of a CLL patient on “watch and wait” is not easy. It requires remaining constantly vigilant to the patient’s physical and emotional health. Below are some coping tips that I learned during my experience as Len’s caregiver:

  • Reduce stress by learning as much as you can about your partner’s condition. There are numerous online resources in the way of written materials and videos. Watch and read and learn. You don’t have to try to learn as much as a doctor by any means. There are plenty of sites that focus on patient education that will give you a good idea of the biology of the illness and the treatment options.
  • Know yourself and set boundaries for what you can and can’t do. Take care of yourself, live and eat healthy, get plenty of exercise and be sure that you are living your life also. Get a hobby that you enjoy and get plenty of rest.
  • You are not alone and do not try to do it all by yourself. Talk to friends and family. Join a support group for caregivers. Get professional help if you feel you need it. Caregiving is a demanding job. Be sure and ask for help.

Caregiver_Awareness_Month

  • Make sure you get your patient to see a specialist. Often the patient feels indebted to the doctor who diagnosed the disease. That doctor may or not be a CLL specialist. Get a second opinion. We have talked to care givers that do not want to upset the diagnosing doctor. Too bad about the doctors feelings this is the life of your loved one. If a doctor is unwilling to work in tandem with a specialist get a new doctor,
  • Prepare for doctor appointments. Several days before doctor visits, sit with the patient and talk about the upcoming visit. Discuss what questions to ask of the doctor and of the nurse. Write all questions down in order of importance to the patient and caregiver.
  • In discussing which questions to ask, make sure that you ask the patient if it is OK to discuss questions that you think may embarrass the patient. Make sure that you consider the patient’s feelings and offer to discuss how to broach any embarrassing topics. The patient is the keeper of their own health.
  • Attend all doctor visits with the patient, take notes and be the patient’s advocate. Ask questions and prompt the patient to ask questions also. Share in the decision-making and make sure the patient’s voice is heard.

Being a caregiver is demanding, but rewarding. It is about sharing feelings and support and helping a loved one to live well with their illness. Your aptitude has a major impact. Stay hopeful: new research is making strides every day.

How to Communicate With Your Medical Team

During a recent town meeting for lung cancer patients, families and caregivers, Katie Brown, Certified Patient Navigator and Vice President of Support and Survivorship Programs at LUNGevity, explains how LUNGevity can help patients gain the knowledge and support they need to participate in meaningful and productive discussions with their medical team. An informed patient is a confident and empowered patient. Knowledge leads to confidence and shared decision-making.

LUNGevity and other patient advocacy organizations offer patients information about their disease, clinical trials and treatment options. Patients will have the opportunity to connect with other patients that have the same disease condition and share stories about their diagnosis, treatment and how they cope with their illness. They can then take comments and questions back to their medical team for discussion.

In the video below, Dr. Malcolm DeCamp, Chief of Thoracic Surgery, Robert H. Lurie Comprehensive Cancer Center of Northwestern University explains that it is crucial that patients communicate physical and emotional changes to their medical team. The patient plays a major role in their plan of care and they need to provide constant updates and information to their team so that they can get the best care they deserve.

Cindy Chmielewski Talks About Clinical Trials

Cindy Chmielewski, a leader in multiple myeloma patient activism and empowerment, talks with Carol Preston about what she has learned about clinical trials from being a multiple myeloma patient. Cindy believes that patients should seriously consider trials as an excellent treatment option and should discuss the availability of trials with their medical team. Carol and Cindy discuss tips on how to become a more informed patient through multiple platform research, such as online resources, social media or attending seminars.

Watch the full video below to learn more from a forefront member in patient education advocacy.

Cindy Chmielewski talks about clinical trials from Patient Empowerment Network on Vimeo.

The Stigma of Lung Cancer

Tori Tomalia

Tori Tomalia

Tori Tomalia is a stage IV lung cancer patient, avid patient advocate and a writer and blogger. You can find her at Lil Lytnin’ Strikes Lung Cancer 

In the spring of 2013, my biggest concern was juggling my time between grad school, work, and caring for my 4 year old son and 2 year old twin daughters. The nagging cough and increasing exhaustion were pushed to the back of my mind as mere side effects of trying to take on too much. As my breathing troubles increased, my doctor began treating me for asthma, but none of the half-dozen inhalers and pills seemed to make any difference. It wasn’t until a CT scan revealed an enormous mass in my left lung that the words “lung cancer” entered my vocabulary. By then, the cancer had spread throughout my bones and liver. At age 37, I was diagnosed with stage IV lung cancer. Inoperable, incurable. Terminal.

Screen Shot 2015-10-22 at 5.16.16 AM

How could that be possible? I was never a smoker. Like all of us, I had heard over and over that smoking causes lung cancer, but sadly I have learned first-hand that the truth is much more nuanced. Smoking is bad for you, that is obvious and I doubt you could find a single American who hasn’t heard that yet. But so is living a sedentary lifestyle, so is eating junk food, so is having too much stress. It wasn’t until I received my horrible diagnosis that I learned there is one cancer where patients are blamed for their disease, and made to feel that they do not deserve a chance at a cure.

 

If you think I’m exaggerating, take a look at the numbers:

  • Lung cancer takes more lives than breast, prostate and colon cancers combined – it accounts for 27% of all cancer deaths.
  • Lung cancer is the second leading cause of all deaths in the US.
  • The federal government spends about $26,000 in research dollars for every breast cancer death. They spend less than $1,500 per lung cancer death.
  • 160,000 Americans will die of lung cancer this year. 80% will be never smokers or nonsmokers (people who once smoked but have quit).
  • Lung cancer in never smokers is the 6th leading cause of US cancer deaths.
  • Lung cancer kills almost two times as many women as breast cancer, and three times as many men as prostate cancer.

Lung cancer is the second leading cause of death in the USA! You would think funders would be tripping over each other trying to find better treatments and cures, but the bias against this disease is incredibly powerful, and it is costing people their lives.

Another sobering development is that the incidence of lung cancer in young, nonsmoking women is on the rise. Theories abound, but there is no consensus on what is driving this troubling trend. For me, the “why” is less important. What matters to me is more time with my family, and the only way that is going to happen is through research and more treatments for lung cancer.

November is Lung Cancer Awareness Month, and what I ask of you is to simply become aware. Become aware of this disease that is a threat to every person with lungs. Become aware of the precious nature of each breath you have the joy of taking. Become aware of the challenges facing people with this disease. Become aware that no one deserves this.

And if you still feel that the people of all stripes with lung cancer are not worthy of your compassion, well there’s this old story I heard about throwing stones….

Virtual Patient Communities

Virtual Patient Communities Engendering A New Social Health Era

Howard Rheingold, who coined the phrase virtual communities, describes them as “cultural aggregations that emerge when enough people bump into each other often enough in cyberspace.” Rheingold’s words, though descriptive, may not fully capture the depth and breadth of experience many patients find when they go online.

Before the Internet connected people from every corner of the globe, many patients experienced their illness in isolation. Humans have an innate desire to feel connected with others who live life through similar lenses. The Internet, and social media in particular, has lessened this sense of isolation. It has shown us how much people are willing to reach out to others to provide advice and support – even to strangers online. Clay Shirky, author of Here Comes Everybody: How Change Happens when People Come Together, holds that “the desire to be part of a group that shares, cooperates, or acts in concert is a basic human instinct.”

There are as many reasons for joining a virtual community as there are communities online. Probably the most common reason people go online when they (or someone they care about) are diagnosed with an illness, is to find information. Figures from the Pew Research Center show that 1 in 5 Internet users have gone online to find others who might have health concerns similar to theirs. That percentage is even higher – 1 in 4 – among those living with chronic disease, or caring for someone with a disease. Not surprisingly, doctors remain the first choice for an accurate medical diagnosis. But the number of patients saying they turn to their friends, family and other patients for day-to-day advice, and emotional support is higher.

For some patients turning online for support is more convenient; not everyone can attend an in-person support meeting at the time they most need it. Online you can find 24/7 access to support, unbound by restrictions of time or location. Any person, anywhere, any time – whether they are a patient, caregiver, family member, or friend—can find someone else in similar circumstances who understands what they are going through.

For others, it is about finding hope. Corrie Painter, an angiosarcoma patient, passionately believes that networked patients save lives. In Rare Cancer Meets Social Media, Painter captures the joy of finding hope online.

“When faced with mortality, I think the first thing many of us do is try and find someone, ANYONE else who understands what we’re going through. I put feelers out into every corner of the Internet. And I found people! I sent them messages and received nothing in return. Turned out they were gone, all of them, by the time I tried to reach them. So I turned to Facebook in a last ditch attempt to find anyone who knew anything about this disease. And I found her. The one and only Lauren Ryan, alongside eight other members of an angiosarcoma facebook group that Lauren started in 2010. Every single one of them was alive. They were ALIVE. I instantly connected with each of them. Josephine was 3 years out from my same diagnosis and was ALIVE. Lauren was a year and a half out and had no evidence of disease. They took me under their wing and provided me with hope in spades. I clung to every word they wrote. It was the same story eight times over”.

Personal stories and first person accounts of illness are the life blood pulsing through the social media healthcare eco-system. By telling your story, you can help shed light on a condition’s symptoms, prognosis, and other details for those still searching for the correct diagnosis. Medical terminology and data, though undeniably important, can obscure what it means to live with a disease and make it difficult for most people to relate. Personal stories, though, frame our individual experiences in a way that lets others connect and find diagnostic clues that may have been missing. Isabel Jordan, the mother of a son with a rare disease, credits reading a patient’s blog to help her finally see the pattern in symptoms in her own son’s life, which set them on a new diagnostic path.

“As a parent of a child with a rare disease I’m constantly looking for patterns, for clues, for ideas of what could be next in our diagnostic journey,” she writes, “I look for researchers, doctors, other connected parents to see what they are posting. It was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path. Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open to new ideas”.

In the case of rare diseases, where doctors simply don’t have the answers to patients’ questions due to low patient numbers and, consequently, insufficient research into the disease, it is the patients themselves who are banding together to find the answers they need. Katherine Leon, an SCAD (spontaneous coronary artery dissection) survivor, leveraged the power of her virtual community to find the cause of her rare heart disease, and prevent it from happening to others. At the time of her diagnosis, SCAD was a poorly understood and under-researched condition. Physicians had no clinical studies on which to base treatment plans. Katherine connected with fellow SCAD survivors through social media and used their collective voice to do what hospitals couldn’t – to launch research at the Mayo Clinic. Leon credits social media as a key research accelerant. “Social media absolutely gets the credit for making scientific study of SCAD possible” she says, “in 2003, my cardiologist told me I would never meet another SCAD patient. It was just too rare. Today, I “know” more than 1,000 fellow survivors thanks to Inspire, Facebook ‎and Google”.

If stories are the life blood of an online patient network, a strong sense of community is at its heart. Members share an emotional connection to each other and a sense of shared experiences. They have a feeling of belonging to and identifying with the community, believing they matter within the community and they can influence and be influenced by them. Diabetes patient and advocate, Renza Scibilia believes that “there can be real solidarity when you are part of an online community.” She writes, “one of the reasons social media is so powerful is because of the way it connects people. By removing all the constraints that would normally prevent people from sharing, we form connections based on shared experiences and familiar stories”.

What does the future hold for virtual patient communities?

In David Weinberger’s book, Too Big To Know, the author argues that we are in a new age of “networked knowledge”; meaning that knowledge – ideas, information, wisdom – has broken out of its physical confines and now exists in a hyper-connected online state. Translating Weinberger’s argument to healthcare, the narrative is one in which the uptake of social media signifies a radical transformation of established notions of patienthood, with patients now situated within connections to other patients, family members, carers and healthcare professionals, creating a new social health experience.

CEO of Smart Patients, Roni Zeiger M.D., is convinced “that our next exponential leap in medical progress depends on us learning from networks of micro-experts.” The learning that begins in virtual patient communities can quickly translate to offline activity. Corrie Painter knows first-hand the power of tapping into a network of micro-experts.

“When people find us now”, she writes, “it actually might change the course of their disease. We have sent so many people to the same doctors that they have become clinical experts. These doctors now understand nuances of this disease that weren’t possible when only a handful of angiosarcoma patients would come through their clinics each year. Patients who get treated at these large volume centers bring the knowledge from these clinician experts to their local doctors. As a result, the patients are driving expertise in this rarest of rare orphan cancers, and that expertise is filtering out into local clinics. All because of our collective need to connect with others diagnosed with angiosarcoma”.

In the future, new online tools will come and they will go, but our innate desire to reach out, to connect, and to help one another will remain. It’s people who ultimately build communities, not technology. The communities may be virtual, but they are no less real. It’s still individuals speaking to other individuals, people helping other people. What’s changed, to quote Sussanah Fox, Chief Technology Officer at U.S. Department of Health and Human Services, is that we now do it at the speed of internet connectivity. Fox thinks that “the most exciting innovation of the connected health era is people talking with each other.” That may sound simple, but as the stories in this article illustrate, talking with each other can have profound and far-reaching effects in our connected digital age.

 

 

Spotlight on: LUNGevity – The Meaning of Lung Cancer Awareness Month

People who aren’t directly impacted by lung cancer may not know that November is Lung Cancer Awareness Month.

What exactly does that mean and what can people do during November to raise awareness about lung cancer?

Lung Cancer Awareness Month (LCAM) is a national movement originally created by lung cancer organizations, survivors and advocates to dispel the stigmas associated with having lung cancer and to raise awareness of the disparities in lung cancer research during the month of November. This is done in most part by making the general public aware of the lung cancer survival rates and lack of funding for research, and putting a face to the disease.

Most people don’t know that 1 in 15 people will be diagnosed with lung cancer and that over 60% of people who are diagnosed are never smokers or people who quit smoking decades ago. It’s the deadliest cancer killer, killing twice as many women as breast cancer and three times as many men as prostate cancer.

As VP of Support and Survivorship for LUNGevity, I support and get to know a lot of lung cancer fighters. I have supported a patient as young as 16 with stage 4 lung cancer. It can happen to anyone with lungs. LCAM is about sharing the facts about the disease and need for funding, informing the public and talking to media,; it’s about offering resources to patients and providers and highlighting advocacy opportunities to change the public’s perception and outcomes for patients.

LCAM It’s not about smoking cessation or tobacco control. Some people mistake LCAM for an opportunity to talk about the hazards of tobacco and promote smoking cessation. That’s something that we should encourage people to do all year long. But that’s not lung cancer awareness. That would be lung cancer prevention, and only then it would pertain to just 10% of smokers.

Join LUNGevity, survivors and advocates across the nation as we unite to shine a spotlight on lung cancer this month.

Here are some ways you can help make a difference this month:

  • Tell someone that November is lung cancer awareness month.
  • Take a picture with a fact sign or your LUNGevity ‘Bandy’ wristband and let’s make it viral.
  • Share the facts about this disease and let people know that if they breathe, they can get lung cancer too.
  • Distribute materials in and around your area to hospitals and support organizations
  • Share our articles, blogs and videos over social media.
  • Let people know about LUNGevity’s comprehensive lung cancer 101 website
  • Let people impacted my lung cancer know about LUNGevity programs and services
  • Participate in Twitter Chats
  • Create a new event or volunteer or participate in events in your area
  • Volunteer to be a buddy for a patient or caregiver
  • Become a volunteer Social Media Ambassador

Let’s raise awareness this November in honor of the 435 people who die of lung cancer each and every day and the 220,000 people in America who are living with it.

 

Surviving Lung Cancer


 

(Editor’s note: Randy Broad is a 7 year lung cancer patient, avid lung cancer patient advocate, and Secretary of the Patient Empowerment Network Board of Directors. He is a former international business executive and author of the book, It’s an Extraordinary Life – Don’t Miss It.)

At 52 years of age, Randy Broad was diagnosed with non-small cell lung cancer. There was no history of lung cancer in his family. He had no idea of what the disease was. He was recommended to an oncologist, but realized pretty quickly that this oncologist was not for him. Randy did some research and, as he says, ‘got really lucky’ and found Dr. Renato Martins at Seattle Cancer Care Alliance. Randy knew right away that Dr. Martins was the right doctor for him.

lung cancer patient

Randy Broad

Dr. Martins enrolled Randy in a clinical trial, telling him that a trial was ‘tomorrow’s drug today’. That’s all that Randy needed to hear. Eight years later, Randy is living well and telling his story to countless other lung cancer patients world-wide.

In honor of Lung Cancer Awareness Month, I interviewed Randy to ask him about how he is living and coping with the history of a lung cancer diagnosis. Below are his thoughts.

Joan: How did you deal with the initial diagnosis of lung cancer?

Randy: All I could think about was my kids. That they would grow up without a dad. As soon as I was diagnosed, I had to text my kids and tell them that I loved them. I had to figure out what it was all about and what really mattered to me. I went to the local oncologist and was told that I had 2 years to live. I thought, how does he know? How can he say that without even knowing me? I just knew that I had to shop for another doctor. This is a life and death decision. Then I stumbled upon Dr. Martins at Seattle Cancer Care Alliance and I knew that he was the doctor for me. He advised me to enroll in a clinical trial and I trusted him and did just that.

Joan: Knowing what you know now, what would you have done differently?

Randy: Back then, some of the resources weren’t available like they are now. I didn’t really know how to search for a good doctor. Now I really think that the best way to find a doctor is through a pharmaceutical representative. They know all the doctors at all the hospitals. They know which doctor is doing what research and who is most knowledgeable about drugs and clinical trials.

Joan: What would you tell a newly diagnosed lung cancer patient?

Randy: Take someone with you to every doctors appointment. Take notes, talk it over with someone else, because really, you will only take in about half of what the doctor says. You really need someone there with you. Get a good doctor that you can relate to – a specialist for your condition. And even if you really like your doctor, get a second if not a third opinion.

Joan: How do you stay healthy today physically and mentally, knowing that you have survived a serious illness?

Randy: You have to live your life. Do what you love. Focus on what matters and not on what doesn’t. Assess what you want out of the rest of your life. A cancer diagnosis puts life into perspective. Take time to enjoy. Personally, I started writing. First I wrote a blog and got my thoughts down every day. This was cathartic for me and really helped me. It also helped me keep in touch with family and friends who were interested in how I was doing. A blog was a way to communicate my story to all of them. Then I started writing a little more philosophically and my blog turned into a book! Writing this book was a great experience. I wrote favorite stories about my life so that my children could read them and know about my past experiences.

As far as exercise goes, I did yoga and meditated during the time I was getting chemo. Now, I ride my bike and walk. I only really have half a lung that works, so stairs are difficult for me. I have always eaten well. I like to cook and eat healthy. People used to send me information about diet plans. I’d receive about a diet a day: melon diet, this diet, that diet. What I do is I eat in moderation. If I want to eat a steak, I eat it. I enjoy it. I really try and live each day and enjoy what I have.

Joan: Any last thought as a 7 year lung cancer survivor?

Randy: As lung cancer patients, we don’t think about the destination, but live life in moments. When lung cancer patients share their stories, you will hear, ‘I just want to see my daughter get married’, or ‘I just want to see my grandson take his first step.’ I have seen my daughter go through high school, graduate from college, fall in love and now she lives with her boyfriend and they just got a dog together. My life is now measured by milestones that I will always remember.

 

“The greater the obstacle, the more glory in overcoming it” Moliere