Words to Live By

Jenn Ryan_LCAM 2015

Jenn and her family.

By Jenn Ryan

Last spring, after a long bike ride I coughed and a teeny tiny piece of blood came up.  I knew this was not normal so I went to the doctor and had a chest x-ray.  It revealed a mass on my left lung.  That same day I had a CT scan and received the news no one should ever hear.

In one week, I went through Gamma Knife for 14 brain lesions on a Wednesday, started carboplatin and Alimta on a Friday and left for a wonderful vacation with my family that Saturday.

My name is Jennifer Ryan and I am a 40 year old lung cancer survivor.  I was diagnosed in May of 2015 with stage IV NSCLC.  I am a mother of four beautiful children and a music teacher to 500 kiddos in the Springfield public schools.

Since my diagnosis, I have focused solely on my family. It is all about my four children and giving them as many days as I can.  We laugh more, play more and let all the little things go now.  My 15 year old daughter is my medical partner.  She helps me through every treatment, from sitting with me while it drips to helping with our little kids when I am exhausted.

I gain strength from my husband, children and greater community. Our local football program has raised more than $14,000 to help cover medical bills. I live in a great town that cares when one of their own is down.

My advice for those on, or just starting, their lung cancer journey: Stay active! Running after four children and taking care of my husband keeps me focused and positive. Don’t read the statistics.  Insist on genetic testing and get a second opinion.  Any day could be your last, cancer or not.

 

 

5 Ways to Make a Difference

Breakers_121

November is Lung Cancer Awareness Month and this is the time of year when our community comes together to make some noise for lung cancer! Here are 5 ways to get involved and raise awareness this November.

  1. Attend an Event– With close to 200 lung cancer events taking place across the country, chances are, there is one near you. Find one today!
  1. Get Social – Social media, especially Facebook and Twitter, are wonderful platforms to spread the word about lung cancer to your friends and others. To make it even easier, we will have images and facts on our Facebook and Twitter pages that are easily shareable. Check it out!
  1. Contact Congress – The newly formed Lung Cancer Caucus needs more members. There is an easy way to ask your Representative to join the Caucus. Reach out today!
  1. Shop ‘til You Drop – A percentage of your purchases will come to us and help support our mission!
    • Amazon Smile – Buy anything you want and list Lung Cancer Alliance as your charity.
    • Purses – Up and coming designers Angela and Roi have stylish purses designed just for lung cancer awareness.
    • Bravelets – Show your strength or offer strength to a loved one with the “Be Brave” lung cancer bracelet.
    • BlueBeards – Find the perfect grooming products for the men in your life.
  1. Write a Letter – You can share your story and the facts about lung cancer through a letter to the Editor of your local paper. Here is a sample to get your started.

When you take action this November, in any way, please let us know so we can make show the community and urge others to follow your lead!

Lucky Me

Kathy Sinclair

Kathy Sinclair

By Kathy Sinclair

In May 1999, I discovered a lump in my breast.  I recall the radiologist spending time with me following an ultrasound to alleviate my fears.  A nurse navigator was summoned and she provided me with a packet of information about the disease and services that were available to me. I felt that I had a team behind me. Surgery confirmed the lump was cancerous.

In preparation for lymph node surgery I had a chest x-ray which revealed a spot on my left lung. Was I already stage IV? In June I had a wedge resection and learned, on my 41st birthday, that the tumor was lung adenocarcinoma. This time there was no nurse navigator coming to my aid.  I did not learn of any treatment plan until I met with my new oncologist a couple weeks later.  Both cancers were early stage. The lung surgery was considered curative and prognosis for the breast was equally good. Although I was just diagnosed with two different cancers, I was feeling lucky! I looked at the breast cancer as a gift which led to the early detection of the lung cancer.  Had I not had the breast cancer, diagnosis of the lung cancer probably would have occurred much later after symptoms were present.

In the fall of 2003, I discovered a soft spot on my skull. My luck was about to change. As frightening as the first encounter with cancer had been, the Friday night that I saw my skull light up on the bone scan was terrifying. I was alone in that room, it was late and the technician confirmed my suspicion. A craniotomy followed which determined the cancer to be lung in origin. I was now stage IV lung cancer. The survival statistics were very grim, but I was determined to do whatever it took to beat the odds. While I was not at risk for either disease, genetic testing following one of my many craniotomies found that I was strongly positive for EGFR. Luckily for me a drug was developed which targets the mutation. It has been 5 years since my last cancer surgery.

In 2010, when I learned from Lung Cancer Alliance of the disparity in cancer research funding, I began advocating locally and in Washington, DC to raise awareness about lung cancer. I was shocked and then angered that the #1 cancer killer received just a fraction of the federal funding that other common cancers received. It is not surprising then that since the war on cancer was declared in 1971 the 5-year survival rate for prostate cancer increased from 69% to 99% and breast cancer went from 75% to 90%; but, for lung cancer the rate barely moved from 13% to 17%. I am one of more than THREE MILLION breast cancer survivors alive today. At the same time, I am one of only 330,000 lung cancer survivors alive today – it shouldn’t be this way.

My hope is that more people will be as lucky as I to be living with lung cancer after 16 years from diagnosis.

 

 

 

Immunotherapies: More Options, More Approvals, and More Questions

Flyer Image_People Smiling

By Jennifer King, Director of Science and Research for Lung Cancer Alliance

It has been quite a busy and exciting two weeks for the Food and Drug Administration (FDA) and the lung cancer community!  On October 2, 2015, the FDA approved a new immuno-oncology drug made by Merck called Keytruda (pembrolizumab) for use in advanced non-small cell lung cancer (NSCLC) after platinum-based chemotherapy and any appropriate targeted therapies (such as Tarceva or Xalkori) stop working . This drug is the second anti PD-1 inhibitor approved for lung cancer – it is considered a checkpoint inhibitor, which is a type of immunotherapy.  Keytruda is the same type of drug and targets the same pathway as the Bristol Myers-Squibb drug Opdivo (nivolumab).

There were two major differences in this approval compared to the Opdivo approval that I wrote about in March.  Importantly, Keytruda was approved for all NSCLC, including adenocarcinoma, not just for squamous cell carcinoma.  Second, Keytruda was only approved for patients who undergo molecular testing (biomarker testing) and test positive for PD-L1.

Then, last Friday, October 9, another early ruling from the FDA:  the Opdivo approval was expanded for use in all NSCLC (after chemotherapy) just like Keytruda.  I had mentioned in the blog comments that this was likely coming based on scientific data presented at meetings but the community was not expecting it for another few months.  In addition, a new molecular test (biomarker test) was approved for use with Opdivo too.

So what does all of this mean for lung cancer patients?

Generally, this is good news although a lot of questions remain (for everyone, including the doctors and the researchers) about how to best use these drugs and tests.  Here are some important points to understand about where we are now:

  • It is good to have options and the Keytruda approval gives NSCLC patients another drug option
  • Both drugs are now approved for all types of NSCLC after trying other treatments
  • If you test positive for PD-L1 (by either test), you are significantly more likely to respond well to Keytruda or Opdivo. This can help guide your treatment decision. As of this week, both Quest and LabCorp are some of the major diagnostics companies providing both tests.
  • Currently, you are required to take a test to go on Keytruda, but you are not required to take a test to go on Opdivo. This may change, but that’s where we are on 10/15/15.
  • Unlike the molecular tests for targeted therapies (EGFR, ALK), the PD-L1 tests do not seem to be as definitive. Not everyone who tests positive responds to the treatment (45% in the Keytruda study).  There are also people who test negative who do still respond to the immunotherapy drugs, it’s just a much lower percentage of people.  Researchers are still trying to understand this.

As I mentioned, many questions remain for researchers and doctors.  Not only is there no head-to-head study data about which drug is better (the general thought is that they will be similar), but there has also been no head-to-head comparison of the tests.  There are differences between the tests in how many cells have to have PD-L1 to be a “positive”.   Also, although you would suspect that the test associated with Keytruda will also predict response to Opdivo and vice-versa, there have been no studies showing this since each test was created and tested with each specific drug. Lastly, neither drug is currently approved in small cell lung cancer; but there is early data suggesting there may be benefits for those patients too.

The science is going to keep evolving and both Keytruda and Opdivo are in multiple active clinical trials to test earlier rounds of treatment as well as combinations with other types of drugs.  So stay tuned. Hopefully we will keep getting answers to more and more of the questions.

 

If you fall out of the approval requirements to take either of these drugs, you may be able to receive the drug through a clinical trial.  Find one with our clinical trial matching service.

Every Woman (and Cancer) Deserves Equal Treatment

Pat and her daughter at the  National Lung Cancer Summit.

Pat and her daughter at the National Lung Cancer Summit.

By Pat Dunn

In November 2015 I will be a 12 year lung cancer survivor.

When I was first diagnosed in 2003, the thoracic surgeon at our local hospital sat in his office, looked at my husband and I and said, “Go home. Get your affairs in order. You have six months to live.” I was 53 years old at the time and we had just celebrated our 33rd wedding anniversary.

You may recall that back in the early 2000’s the computer was not what it is today. We were limited to searching WebMD, which offered no hope. It basically informed us that if you have lung cancer, you will die.

After discovering this realization, I went back to the oncologist’s office and asked him what we should do. He advised us to find someone who would take a chance and operate to remove the tumor.

I was lucky that both my daughter and son were living in Boston, home of some of the best hospitals in the country.  We went to the library, got out the yellow pages, copied down phone numbers and went home and started dialing anybody and everybody who sounded like they might know how to take care of lung cancer. It was not easy. There was no Lung Cancer Alliance to help. Most said if you have lung cancer you should not have smoked and yes, you are going to die soon.

Needless to say, we found a surgeon at Brigham and Women’s Hospital who took a chance on me. I had surgery and he removed my upper right lobe and lots of lymph nodes. We returned to Florida for chemo and slowly settled back into life. A little less than 2 years later, my husband passed away suddenly from a massive heart attack at the age of 56.

Fast forward to March 2014, I had my yearly mammogram. The next day radiology called and said I need to come in for a more extensive mammogram. I went in on a Wednesday and the next day received a call from the nurse navigator that I had breast cancer and needed to set up an appointment with the surgeon’s office.  Things moved along rapidly. The oncologist called to tell me what surgeon to go to. The surgeon called to coordinate appointments and check in. The navigator offered to drive me anywhere and call anyone. People from the “pink army” called me to offer help. This was all lovely, but all I had was a small lump, not a death sentence. I could not believe the offers of help. I had a lumpectomy, a summer full of radiation and life went on.

The point of my story is the difference of two cancers. Lung cancer patients are treated so differently than breast cancer. I hope someday there will be as much help for lung cancer patients as breast cancer patients. As women we deserve to be treated equally, not stigmatized.

Thank goodness for Lung Cancer Alliance, I have found so many people who care about all of us: survivors, patients and caregivers. Any help I need is just a phone call away. Thank you all.

 

If you need help along your lung cancer journey, please call our HelpLine at 1-800-298-2436 or email support@lungcanceralliance.org. For more information visit http://www.lungcanceralliance.org/get-help-and-support/.

 

Top 5 Tips for Helping Your Loved One with Lung Cancer

Tara Perloff, Manager of Support Services

Tara Perloff, Manager of Support Services

By Tara Perloff, Lung Cancer Alliance’s Manager of Support Service

When a loved one finds out they have lung cancer, it can be hard to know how best to help them, what to say or even how they are feeling. We sat down with Tara, our Manager of Support Services, to get an expert’s opinion on the matter.  Through her experience running our Phone Buddy and GUIDES programs, Tara recommends the following:

  1. Take care of yourself. There is no one-size-fits-all approach, but it is essential that you find your best support during this journey. You need to be strong and in the best health possible in order to be there for your loved one.
  2. Don’t take it personally. Understand that your loved one is coping with their disease in their own unique way and try not to take things he or she says or does personally.
  3. Respect independence. Your loved one may want to do more for him or herself to prevent burdening you. Go with it and let them as long as it doesn’t negatively impact his or her health.
  4. Don’t change your relationship. When your loved one has cancer, it doesn’t mean that they want to be treated differently or want your relationship to change. Try your best to treat them the way you did before diagnosis.
  5. Be open and direct. At the time of your loved one’s diagnosis, find out exactly what your loved wants throughout every step regarding treatment and support. This way, you will be on the same page and be able to make decisions as a team.

To find out more about being a caregiver for a loved one with lung cancer, call Tara at 1-800-298-2436 or email her tperloff@lungcanceralliance.org.

Helping Others Shine Their Light

Kristen PREFERRED

Kristen McAvoy, Events & Volunteers Manager

By Kristen McAvoy, Lung Cancer Alliance’s Events & Volunteers Manager

When I moved to Washington, D.C. three years ago to work on Capitol Hill I wasn’t sure where I was going to land. I only knew that I wanted to affect positive change in the world, but I had no idea how I was going to do it. Then I found Lung Cancer Alliance.

My alarm goes off every morning at 7:15am giving me an hour to get ready and then start my mile and a half walk to work. Like many DC commuters, I listen to Pandora to get pumped for the day and I get to work between 8:30 and 9:00am. Once at my desk, the majority of my day is spent answering one question: “What is Shine a Light and how can I raise awareness for lung cancer in my community?”

I am proud to respond that Shine a Light on Lung Cancer is the largest coordinated awareness event for lung cancer in the United States and anyone can host or attend this great event to educate and raise awareness in their community. I then take the steps necessary to help advocates plan their Shine a Light event and reach their goals.

Three years ago, I could not have imagined that I would be managing the largest coordinated awareness event for any issue area, but I am honored to raise awareness for a disease that really needs my attention. I have managed the program since 2014 and I am thrilled to say that 172 events were hosted nationwide last year, a 20% increase from 2013.

I feel so lucky to spend my days helping lung cancer survivors, their families and friends change outcomes for a disease by hosting fundraising and awareness events. The enthusiasm and dedication that these advocates have inspire me to push on. We are aiming for 300 Shine a Light events nationwide this year, which would be the largest, widest reaching event yet!

At 5:00pm I turn my computer off, excited about the people I will meet tomorrow, the innovative ideas they will bring to the table and how, together, we will affect positive change in the world.

To learn more about Shine a Light on Lung Cancer and to find one in your community, click here!

If you are interested in hosting a Shine a Light event please contact Kristen McAvoy at KMcavoy@lungcanceralliance.org.

World Conference on Lung Cancer: What to Know

16th World Conference on Lung Cancer hosted by the International Association of the Study of Lung Cancer

16th World Conference on Lung Cancer hosted by the International Association of the Study of Lung Cancer

By Jennifer King, Director of Science and Research for Lung Cancer Alliance

While most people were at the pool over Labor Day weekend, there was a huge gathering of lung cancer specialists in Denver at the 16th World Conference on Lung Cancer hosted by the International Association of the Study of Lung Cancer (IASLC).  Five members of the LCA staff attended on various days and were able to have a bunch of great meetings with our partners, connect with lung cancer survivors/advocates and hear a lot of science about the study of lung cancer.   Besides missing pool time (and my kids’ first day of school), the worst thing about the meeting was that there were often 14 scientific sessions about lung cancer running at one time and it was impossible to see everything live.  Despite that, here’s a few highlights from this year’s meeting:

  • Early Detection – Lung cancer screening is here to stay and there is a lot of work being done to understand who should be screened by low-dose CT and when as well as what to do with “indeterminate nodules” where CT screens identify something, but it’s not clear if it is cancerous and should be biopsied. There was an emphasis on better risk modeling using known risk factors.  There were also a series of talks on new technologies investigating whether testing blood, sputum or even just your breath could help determine who should receive a CT scan or whether a patient with one of these nodules really needs a biopsy. This technology is not ready for the clinic yet, but it’s on the horizon and there is currently a lot of research being done in this area.
  • Immunotherapy – This continues to be a hot topic with patients and physicians as researchers learn more about using immunotherapies for lung cancer. There was an update on Opdivo, showing that the patients with squamous cell carcinoma who respond well (~25%) are continuing to respond out to 2 years and are still being followed.  There’s still some controversy about whether there is a useful “biomarker” to predict whether you are likely to respond to this class of drugs.  There was also data showing that combining two different types of immunotherapies may result in higher response rates than taking just a single drug. Of note, this was done in the first-line, before chemotherapy, and there is a lot of interest in studying the drugs in this way.
  • The Changing Face of Lung Cancer – Two different studies at the meeting, one from the UK and one from the US, showed that the incidence of never-smoking non-small cell lung cancer is increasing. These never-smokers tended to be younger and female.  A different study specifically on lung cancer under the age of 40 showed that these cancers tend to have higher levels of genetic changes in genes such as EGFR and ALK.  Taken together, it’s even more clear that lung cancer is not just a smoking-related disease and there needs to be more public education and increased awareness about who is affected. This group also doesn’t fit the current high-risk screening guidelines so research is also needed on how to bring early detection to this population.

And there was so much more including interesting (VERY early) data on a potential new small cell drug that would have a predictive biomarker, an excellent talk on why you should still quit smoking even if you have been diagnosed and entire sessions on supportive care and patient advocacy.  It was a fantastic event and it was worth the Labor Day travel – although I’m not sure my husband agreed.

Click here to listen to Jennifer’s interview with ASCO Post at World Lung.

Life After Lung Cancer

Niall practicing Taekwondo

Niall practicing Taekwondo

By Niall Reynolds, Ireland

It was 2007, I was 41 years old and training for my black belt in Taekwondo when I found out I had lung cancer. After spending weeks trying to get rid of a cough, I went to my doctor. A few weeks later I had a chest x-ray followed by a CT scan which confirmed I had lung cancer, a disease I could never have imagined dealing with, especially at my age. Treatment began quickly with a lower lobectomy on my right lung followed by four months of chemotherapy.

I was determined to continue to live my life, even throughout treatment. The way I did this was not to plan for anything beyond three months. We took vacations, but only booked them a month or two in advance. As time went on, I could extend that time to six months and then a year. I love to travel and since my diagnosis have been to most places I’ve wanted to see, such as Hawaii, the Grand Canyon, Paris and London.

I frequently used the Lung Cancer Alliance website and community for information and support throughout my journey. It was a massive help! After my operation and chemotherapy, I felt like I was sent home to deal with what had been left (e.g. chest pain, drug side effects, etc.). The website offered me the reassurance and information I needed, while the lung cancer community provided me with a platform of support and hope.

Although we never met each other in person (some people being an ocean away from my home in Ireland), I felt a bond with the lung cancer survivors I connected with online. There was a sense that we were all going through this together, on different scales with good and bad outlooks, but all supporting each other through it. One lady told me her goal was to see Ireland before she died, which she did. She loved it and loved the music. I sent her a CD of Irish music, which she loved and played many times before she died.

My advice to those newly diagnosed is to take it one day at a time, until you can take it one week at a time, and so on. Be good to yourself and do what makes you happy. Make time for family and try not to get bogged down by too much “cancer talk.” Make a point to live with awareness, noticing and loving every moment, rather than getting caught up in the “rat race.” Try not to hold grudges or get bothered by silly annoyances; it is a waste of precious time. If you received help, let those people know how much you appreciate that help.

Be sure to thank and have patience with your caregiver(s). Whether that person is your spouse, partner, family member or friend, they hate that you are sick and some would rather take the illness from you than see you suffer. They are the true heroes in my book.

Finally, give back if you can; sharing your experience can make a world of a difference for someone newly diagnosed. It is likely you will benefit just as much as the people you help.

Since my operation I have gone on to get my second and third black belts in Taekwondo, started my own Taekwondo school with a few other friends and completed numerous cycling tours for a local cancer charity which I have now joined the board.  I also teach self-defence to women once a week. There is life after lung cancer, enjoy it!

20 Years to Celebrate and Educate!

By Selma Rosen

Selma, a lung cancer advocate and 20 year survivor.

Selma, a lung cancer advocate and 20 year survivor.

Every year is a celebration for me, but this year in particular. This year marks the 20 year anniversary of my lung cancer diagnosis. It was a fluke my son’s eagle eye saw a lump on my throat that brought me to the doctor, which landed me in a CT scan, and later resulted in the discovery of a nodule on my right lung.

I was incredibly lucky to have found my lung cancer at an early and treatable stage 20 years ago. Following my diagnosis, I made it my mission to ensure others were given the same opportunity I had. Just a few months before my diagnosis, I had bronchitis for which I had two chest x-rays; both were negative. Realizing what a difference a CT scan can make and the life-saving benefits that accompany it, fueled me to take action and raise awareness.

Between 2001 and 2014, I led the Lung Cancer Society of Long Island, where I spent most of my time educating the community about early detection and raising awareness for the stigma associated with the disease, or how I like to call it “blaming the victim mentality.” I was invited to speak at the World Conference on Lung Cancer and worked with I-ELCAP to ensure CT screening became the gold standard for early detection. Knowledge is power and if we can educate those at high risk, as well as the general public, we can make a difference and save lives.

Being a 20 year lung cancer survivor is not all fun and games. There are a number of side effects that have lingered on from my surgery that I deal with every day.  I have scar tissue on my right lung that leaves me susceptible to pneumonia, which I find myself in the hospital for often. I also have difficulty moving the upper ride side of my body, especially repetitive motion, without experiencing pain. But I am alive!

My lung cancer diagnosis set me on a path to help others and raise awareness for early detection of the disease. I was lucky enough to accidentally find my cancer at a treatable stage. Now more and more people can do the same and I will continue to fight on their behalf.

 

To find out if you are at risk for lung cancer visit www.atriskforlungcancer.org. Looking to get a CT scan? Find a Screening Center of Excellence near you.

If you are a long-term lung cancer survivor and need help managing side effects, click here. You can also call our HelpLine, 1-800-298-2436, to speak with one of our support staff.