Join Me. Leave A Legacy.

 

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By Elaine Gage

I am 84 years old and a 26 year survivor of Small Cell Lung Cancer (SCLC). My lung cancer diagnosis has shaped my life. In 1989, I went into the doctor with some persistent shoulder pain. While discussing my health with my doctor, I mentioned I was a smoker and was due for my annual chest x-ray.  An often routine procedure, but one that constantly haunted me, finally forced me to face my biggest fear; they found a nodule on my lung and it looked like lung cancer.

16 days later I went in for surgery and shortly after started chemotherapy. I never considered dying. Death was not an option for me. Although we knew lung cancer statistics were not good, my husband and I deliberately did not look into the facts, as a means of self-protection.  I chose to only focus on one thing at a time. It was too hard to think past the present. I concentrated on healing from surgery, then getting through chemotherapy and did not let myself worry about the consequences. Now this isn’t to say I wasn’t scared to death; I was.

After getting through those difficult times, to everyone’s surprise, I started to get better. At the time, this was unheard of for a SCLC patient. “Why me?” “Why did I survive?” I would ask myself.  There had to have been a reason for it and I decided I must take advantage of the life I had been given and help others.

A few years after my diagnosis, I started to volunteer. I was contacted by the organization that is now Lung Cancer Alliance.  They were a small “kitchen table” group of passionate people who I was instantly drawn to. I found my niche as a Phone Buddy, speaking with other SCLC survivors on the phone.  I was able to help them through their lung cancer journey, by offering advice and hope from my own experience. I believe I received more out of this experience than the patients I was talking to. I met the most amazing people. I am so impressed with the courage of cancer patients.

Later on, I took my volunteering off the phone and into our local hospital in Southern CA, where I had once been treated for my lung cancer.  I joined the Mended Hearts group, who spent time with hospital patients before and after surgery, offering them care and company. I wanted to work with lung cancer patients specifically, but there was no such program. I have never been one to pass up an opportunity, so I decided to create a lung cancer specific program myself.

We would visit the patients while they were waiting to go in for surgery, tell them “I know how you feel. I was there and look where I am now.” It was an incredibly beneficial process, not only for the patient, but for me as well. We would meet them after surgery with a homemade pillow and a smile. Looking back, I felt very lonely during my diagnosis and surgery, so it felt good to be there for them.

Lung cancer has shaped my life tremendously. I recently decided I would leave a gift in my will for Lung Cancer Alliance. The folks at Lung Cancer Alliance are my friends. I see this as a way to say thank you to the lung cancer community for the benefits and opportunities they have provided me over the years. Lung cancer is such an important, yet overlooked, cause. If you give money, you want to give it to people who know how to spend it in a worthwhile way and I trust Lung Cancer Alliance.  Lung cancer research, support and spreading awareness is where I want my legacy to continue.

Please consider leaving a legacy and help save lives and advance research. Click here for more information.

Finding Love Where You Least Expect It

Patrick and Joanne

Patrick and Joanne

By Patrick Louis

Love is a funny thing. You tend to come upon it when you least expect it and often in the most surprising places. This holds true for my love story.

I first met Joanne in 1995. We worked together at Houlihan’s in Boston. We were strictly coworkers, however I couldn’t help noticing her beautiful eyes and smile. We started to spend time together outside of work, discussing our passions, families and dreams. Peeling back the layers of our stories revealed some uncanny experiences we had in common.

It was Mother’s Day when I noticed Joanne seemed sad, something was off.  We came to discover that in 1994 we had both lost our moms to lung cancer, within only three months of each other!

Being the romantic that I am (kidding!) I gave Joanne a poem representing daughters that had lost their mothers. Losing my mom was one of the hardest things I had ever gone through and it helped to be with someone who could understand that.

We both left our jobs at Houlihan’s a year later and gradually lost touch with each other.

Two years down the road, I was working at a bar downtown, and as fate would have it, Joanne walked in the door. We began our relationship as friends, catching up on old times, sharing new stories. It blossomed over time, creating a powerful bond, leading to a relationship, marriage and the creation of our own family with our son, Jason.

Through stories and pictures, I feel like I know Joanne’s mom and she knows mine. We want Jason to grow up knowing the amazing people our moms were. Each November, for Lung Cancer Awareness Month, we attend a Shine a Light event, light a candle and remember them.

Although incredibly difficult, I do believe it is possible to find growth and positivity in any situation. Both Joanne and I moved to Boston because of events having to do with our moms’ deaths. We would have never crossed paths otherwise!

My advice, keep an open heart because you just never know when love will greet you. And if you are really lucky, it will root deep and stay for a lifetime or longer.

Click here to honor someone you love today!

I fight for me! I fight for them!

World Cancer Day unites the world’s population in the fight against cancer. It aims to save millions of preventable deaths each year by raising awareness and education about the disease, pressing governments and individuals across the world to take action. One of the best ways to make a difference, raise awareness and help others is by sharing stories of inspiration and survivorship. Here is a story of hope from an incredible survivor.  

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Barry and Michele

Last May I was diagnosed with stage IV non-small cell lung cancer. It started with pain in my side and back that was not going away. Being 43 years old, lung cancer was not the obvious prognosis. Thus began a four month process including a slew of tests. There appeared to be nothing wrong. We were going in circles and felt completely helpless.

One night I woke up hyperventilating. I figured the anxiety had just caught up to me, until the next morning when I coughed up a small amount of blood. We decided to go to the ER and demand a true diagnosis.  I had my first chest x-ray since the process began! After a few more tests, the doctors confirmed I had lung cancer.

How is this possible? I am only 43 years old! I was in shock, not quite processing the news, while my husband of 17 years, Barry, was completely taken into another realm. In the past, I had always served as the caregiver in our relationship, especially 10 years ago when Barry hurt his lower back and was in bed for almost two years recovering from multiple surgeries.  He was scared to take on this new role, but he stepped up to the challenge.

As most of you know, treatment is tough. There is nothing pretty about it. I lost my hair and started to feel like I was losing myself a bit. I told Barry I felt like it had stolen my innocence and freedom.

How does Barry handle the emotional, physical and mental drainage? He finds support from survivors. Barry goes to a local lung cancer support group (find a support group near you), where he hears survivors talk about their experiences, giving him a new perspective in order to best help me.

I am now on my second round of treatment and the chemo has stopped working. As you can imagine, this news was heartbreaking. Now what?  Thankfully, in the same year I was diagnosed, SIX lung cancer treatments have been approved by the FDA. My next step is to start immunotherapy. I have great hope! I refuse to back down in my fight; it is just a matter of finding the right treatment.

The amount of love and support I have received from family, friends, colleagues and even strangers is overwhelming. It runs deep, lifts me up when I am down and makes me thankful for every day. I fight for me! I fight for them!

By Michele MacKinnon

 

Click here to allow Lung Cancer Alliance to support Michele and others like her in their fight against lung cancer.

Lung Cancer Survivorship: What’s Your Plan?

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By Jennifer King, PhD, LCA Director of Science and Research

Much of the first day of the Cancer Survivorship Symposium that I attended this month was dedicated to talking about Survivorship Care Plans.  An early peek at the results of our Needs Assessment Survey (take it today, if you haven’t yet!) suggests that not very many lung cancer patients have these plans after they complete treatment.  This is a problem. As pointed out at the meeting, often it is not even possession of the plan that makes a difference in your care, it is the conversations that go into the creation of the plan.

Cancer survivorship can be viewed as its own complex, “chronic disease”.  If you have been treated for cancer, you not only have to be monitored for recurrences, you may also be at a higher risk for second cancers, heart problems, fertility issues, emotional problems and more.  However, similar to the way cancer treatment is now becoming more personalized and precise, the care of survivors should also be risk-based and individualized.

For example, certain chemotherapies can make you more likely to have late-onset heart problems but others may lead to tingling and numbness in the feet and hands.  Shortness of breath is much more common after lung cancer than other cancer types.  Doctors should understand YOUR history, not that of “cancer survivors” in general, to be able to best monitor you moving forward.  This is the top section of most Survivorship Care Plans – describing your exact diagnosis (type of cancer, stage, etc.) and what specific treatments you had.

The next part of the Survivorship Care Plan focuses on how you should be monitored – and how you shouldn’t. This is important for so many reasons. First, many cancer patients feel disconnected from their care teams once treatment ends. Your oncologist may be focusing more on patients actively undergoing treatment and at some point may want to transition you back to a primary care physician (PCP). The PCP may be reluctant because they may not be well-versed in what is needed for your particular follow-up.   The Institute of Medicine, in an important report in 2005, called this phenomenon “Lost In Transition”.

A Survivorship Care Plan can spell out when and how you should be screened for recurrences and for possible side-effects that are relevant to you. It can specify which specialists you should visit and how often. This can give you (and your PCP) more understanding and clarity on how you move forward and who you see for what purpose.  This may also give you more emotional peace of mind and can save you time and money. One case example at the meeting showed a patient being followed for too many possible things, some of which she was not at a high-risk for, resulting in unnecessary time, loss of work, and added expense.

Ideally, these plans will be filled out and discussed jointly by you and your treatment team.  Hopefully, your treatment team will suggest using one, but if not, here are some templates that you can bring to your doctor for discussion and development of a plan: My Care Plan by Journey Forward, the survivorship plans on Cancer.Net or the LIVESTRONG Care Plan.

The ultimate goal is to plan for the right amount of follow-up care based on YOUR disease and treatment history and enough medical care to ensure you are followed according to known evidence-based guidelines, but not too much that it will negatively impact your quality of life.

On a side note, I would encourage you to talk to your support network (loved ones, friends) about the plan too. Many cancer patients feel like they have a team with them when undergoing treatment. Then, once treatment is over, those people declare victory and go back to their normal lives and don’t realize the challenges of living beyond cancer. Helping your network understand that your path forward may continue to present emotional and/or physical challenges can improve your support as you move into the next phase.

I learned so much at the meeting — but even better was the educating that we did. In a community largely dominated by research on breast cancer, my LCA colleague and I explained to many people that the tide of lung cancer is changing. With coverage of lung cancer screening plus six new drug approvals in 2015, NOW is the time to start understanding lung cancer survivorship because it’s about to start increasing.  We were pleased to find that when we talked to survivorship researchers, they agreed.

 

Above and Beyond: Creating a Community Lifeline

Lori received LCA's Support Group Facilitator Award in 2011

Lori received LCA’s Support Group Award in 2011

By Lori Robinson

My name is Lori. I am not a lung cancer survivor.  I have been running a monthly lung cancer support group in Central Florida for the past six years.

When I decided to start the group, I was working for a pharmaceutical company and noticed the essential need for in-person support for those impacted by lung cancer. It didn’t take much to realize how significantly this community was overlooked.

I saw that patients wanted a safe place to share their fears, experience comfort, peace and hope in the presence of others who share in the journey. On top of dealing with cancer, lung cancer patients also experience a stigma attached to the disease, a shame that is difficult to escape. Lung cancer is an equal opportunity disease; it does not discriminate.  Today, the pendulum is swinging and folks are realizing this.

Our monthly support meetings consist of between 25-35 patients and caregivers. It is hard to believe that when we started six years ago, we didn’t see our first member for three months. Starting a support group takes time, patience and determination. You must create an awareness in the community and they will come.

This group has been and continues to be, a very important place for many.  We had a member who was having such a difficult time he told me the group literally saved his life.  Every month someone will say how much this group means to them.  Of course, there are tears, but we laugh, learn, grow and become so much better, together.

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Lori and her support group in Central Florida

Although we always have a support component to our group, you can’t keep doing the same thing every month. To spice things up, we try and incorporate new and interesting activities and programs, like relaxation techniques and art therapy. We also bring in guest speakers to discuss diet/nutrition, psychosocial elements of the disease, medical/radiation oncology and thoracic surgery.  We are always getting a pulse from members because needs are constantly changing.  Our group is successful because we are open and flexible with topics and the desires of the group.

Working with lung cancer patients has taught me that the human spirit is far more powerful than I ever imagined and absolutely anything is possible if you believe in your dream.  I believe in people and what we are able to achieve together.

If you would like to find a support group near your or are interested in starting your own, we can help! The Lung Cancer Alliance National Lung Cancer Support Group Network  consists of 90+ lung cancer-specific support groups across the country. They will help you get started, provide you with free services and tools to grow and maintain your group.

A Tale of Twin Sisters

“My sister and I, you will recollect, were twins, and you know how subtle are the links which bind two souls which are so closely allied.”  – Arthur Conan Doyle, The Adventure of the Speckled Band

Noreen (right) and her twin sister, Maureen (left) at a wine and painting class a few months post-surgery.

Noreen (right) and her twin sister, Maureen (left) at a wine and painting class a few months post-surgery.

When I was diagnosed with lung cancer, my first thought was my twin sister. Could this be genetic? Might she have the same diagnosis?

I was incredibly fortunate to have found my lung cancer at stage 1 simply by addressing my smoking history with my doctor at an annual check-up. I had smoked for 30 years and fit the high risk criteria, so I was not surprised when my CT scan results came back showing there was something in my lung.

I had surgery two months later to remove the nodule and was in and out of the hospital in a few days, thanks to my lungs strengthening over the past year since I had quit smoking. After several years of breathing troubles and COPD flare-ups as well as missing Christmas with my family and having to leave my daughter’s wedding early, I decided I’d had enough.

While I was dealing with my lung cancer diagnosis and treatment, my sister, Maureen, was still a heavy smoker. Our mother smoked 3-4 packs a day and we both took on the habit at an early age. Like me, she was at high-risk and I urged her to get a scan. If there was something there, we’d deal with it, together. Unlike me, she was nervous to go through with it, but eventually she came around.

To her dismay, the results came back showing two spots, but it was unclear if they were actually cancer. The medical team opted to do surgery, rather than a biopsy which her lungs were too weak to tolerate.

I am pleased to report that my sister’s spots were old infections in her lungs. We both took great comfort in knowing it was not cancer. She is still trying to kick her smoking habit and I know she will eventually, but that hasn’t stopped her resolve to help me in my journey. She recognizes that she’s at risk and is glad she made the choice to get screened.

I had my first six month check-up since my surgery in November and the CT scan results were clean! Since my surgery, my husband and I have started to walk in the park every day to strengthen my breathing and stamina. Christmas was spent with my family, including my sister, and I never once had trouble breathing or any other health issue.

I feel so lucky to have found my cancer early. To find out if you are at risk for lung cancer and may need a CT scan, visit www.atriskforlungcancer.org.* For further questions call 1-800-298-2436 or email support@lungcanceralliance.org.

*Questions are based on current “high risk” criteria for lung cancer. Talk to your doctor about a CT scan if you do not fit the high risk criteria, but are concerned you may have lung cancer.

5 Tools To Help You Achieve Your Health Goals!

Stick with your health goals this year!

Stick with your health goals this year!

The start of the year brings hope, optimism, new goals and resolutions. Despite our renewed outlook, after a few months, or even weeks, it can be easy to lose sight of these goals. Luckily there are tools out there to help us stay on track. We have put together a list of the top online health tools to help you achieve your goals and take control of your health this year!

LOSE WEIGHT
Lose It is designed to help you lose weight in a healthy, sustainable way. You can create recipes, scan barcodes and search for menu items at local restaurants to keep track of your calorie intake; plus it tracks how many steps you take!
GET IT: Search “Lose It” in your App store or visit loseit.com

GET CONNECTED
LCA Unite is an interactive mobile app created just for the lung cancer community. LCA Unite connects you with others in your shoes through chat rooms; helps you keep track of your appointments and easily share updates with your loved ones; and helps you track your side effects from treatments and find events and support near you.
GET IT: Search “LCA Unite” in your App store

GET FIT
A FitBit helps you stay motivated and improve your health by tracking your activity, exercise, food, weight and sleep. An alternative and less expensive option is the Health app on your iPhone, which is customizable and helps track your steps, activities and fitness level.
GET IT: FitBits can be purchased at fitbit.com or search for the “Health” app on the home screen of your iPhone

FIND PIECE OF MIND
If you are a former or current smoker, take this simple online test at www.atriskforlungcancer.org to find out if a CT scan is recommended for you. Most people who get scanned will not  have lung cancer, so find out today and put your mind at ease.  (Note: the test is based on current “high risk” criteria for lung cancer. Talk to your doctor about a CT scan if you do not fit the high risk criteria, but are concerned you may have lung cancer.)
GET IT: Visit atriskforlungcancer.org

QUIT SMOKING
Smokefree.gov helps you quit smoking for good with the help of a supportive community. The website gives you the tools to create a plan, receive help via text message and phone and stay on track. It is never too late to quit!
GET IT: Visit Smokefree.gov
Tell us what tools do you use to keep up with your health goals? Don’t forget to update us on your progress!

 

 

 

Your Voice Matters

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By Jennifer King, LCA Director of Science and Research

Usually that’s election messaging, but today I’m coming at it from a different angle. I get way more excited about science than I do about politics.

You may be surprised to learn that we are being asked constantly, “What do the patients value [or want, or need, or think about XYZ]?” We talk to patients every day and have a fairly good idea of this, but we really want to know more too.

I typically start with, “Well, the lung cancer patient population is extremely diverse and has a very diverse set of needs.”  While I believe this is true, I want to hear it from you.  Because of this, we have launched a Lung Cancer Community Needs Assessment Survey.  Please take it today.

You are our community, we do everything we do for YOU. We should know as much as we possibly can about who you are, what you have experienced, what you want, what you value and most importantly, what you need.  This will make us better.  It will help shape our program offerings and make us better able to serve you and tell others how to serve you.

Here is one example. I am tasked with expanding our research programs.  Given the new drugs on the market and the new availability of screening, I expect to see a higher number of lung cancer survivors in the coming years.  So I have made survivorship research one of our priority areas.  Therefore, I want to know about everything that all of you who are survivors are facing right now so I can make sure we are embarking on the right research studies to make life better for you and those to come.

But it doesn’t stop there. Do you know the expression, “can’t see the forest for the trees”? Patients are not always the best ones to know how they are doing.  A loved one of mine had cancer treatment awhile back.  While it was caught early and he is completely fine, he still (years later) naps a lot.  Really a lot. If we’re all sitting around on couches, he’ll be asleep. And he never used to nap.  I’m pretty sure that if he goes to the doctor, he says “I’m doing great.”  But his wife knows. And I know. Chronic fatigue is clearly a long-term side effect for him.

So our survey is open not only to patients and survivors, but to caregivers, family members, friends, anyone who has had someone in their life touched by lung cancer.  Those people might not know all the answers and may choose “I don’t know” a lot. But that’s ok. We will still learn from it.  And we will probably learn more than we would just from the patients/survivors themselves.

If you’re reading this, it’s likely that you have somehow been touched by lung cancer. So, please, take 15 minutes (20 if you write a lot) and share your voice.  It matters to us.

And thank you to all those who have completed it!

 

It’s About the People

 

“I am in the lowest survival rate and I am going to BEAT THIS!!! BRING IT ON LUNG CANCER. I AM TAKING YOU DOWN.” _Tami

“I am in the lowest survival rate and I am going to BEAT THIS!!! BRING IT ON LUNG CANCER. I AM TAKING YOU DOWN.”    – Tami

By Tami Budd, lung cancer survivor

My name is Tami and I am a 54 year old stage IV lung cancer survivor. 2 years ago Monday (Dec 6, 2013) I knew nothing about lung cancer, including the fact that almost 20% of the 157,499 people that die of lung cancer each year have never smoked.

I went to my doctor with a sore muscle on my right side. I had an x-ray, which resulted in a questionable spot. That was followed by a CT scan, showing that the spot was actually stage IV non-operable, metastatic non-small cell lung cancer. I was completely taken by surprise by the news. I am considered a non-smoker and before this thought you had to smoke to get lung cancer. My doctor told me, if I had not found it I would have been dead in a year. WOW!

When I was diagnosed a friend said “It’s not a death sentence, it’s now a condition you just have to deal with, like cholesterol or arthritis.” For some wonderful reason that just put things in perspective. Rather than feel sorry for myself, I chose to take action.

What could I do to help others? To help myself? I am so fortunate to have found Lung Cancer Alliance, who has served as a guide, support and inspiration for me along my journey. I know that the money I raise for them is going directly into helping those touched by the disease via research, advocacy and support programs. Lung Cancer Alliance is like a family; it is not just about the money for them, it is about the people.

Tami and her nephew at a walk she organized to raise funds for lung cancer.

Tami and her nephew at a walk she organized to raise funds for lung cancer.

This year, I hosted a tennis tournament, raising over $4,000 and joined the Lung Love Walk Houston planning committee to help raise awareness and funds (we raised over $90,000!) for this important cause. I was so surprised at the outpouring concern my friends and family had.

I wake up every morning knowing I get another day of life to live. While I have the opportunity, I want to do everything in my power to help cure this terrible disease so that future generations don’t have to deal with it. I am grateful to Lung Cancer Alliance for giving me the opportunity to do just that!

This December, every dollar you give will be matched to make a direct impact for those in need. Your generous donation will help those touched by lung cancer, like me.  Give today!

A Message from Lung Cancer Caucus Co-Chair, Congressman LoBiondo

Representative Frank LoBiondo (NJ)

Representative Frank LoBiondo (NJ)

By Representative Frank LoBiondo (NJ)

As many of us know too well, lung cancer remains the leading cause of cancer death for both men and women in the United States. And, like countless Americans and many of you, my family has been directly affected by this devastating disease. My wife Tina lost both her parents to lung cancer.

Tina’s parents are only one of countless stories of lives that could have been changed with more advanced lung cancer detection and treatments. Nearly 160,000 Americans will die this year due to lung cancer; an estimated 3,900 from New Jersey alone. Even as lung cancer remains one of America’s biggest killers, lung cancer research is the least funded of the major cancers. Likewise, survival rates for lung cancer have tragically-lagged compared to those for other cancers.

I, along with Lois Capps and Rick Nolan, recently launched the bipartisan Congressional Lung Cancer Caucus to help educate and inform our colleagues on issues specifically related to eliminating stigmas, improving survivorship, furthering research and ensuring equitable access to preventative screenings, treatments, diagnostics and testing. Along with the Lung Cancer Alliance, we are pushing for greater general awareness and additional federal funding for lung cancer research, ensuring it receives the support and resources it demands.

For each of us, the fight against lung cancer is personal. Together, we believe a coordinated and comprehensive effort must be pursued to reduce the mortality rate of lung cancer. Researchers have achieved great successes in many areas, raising the hopes of countless families in the process. With adequate federal and private support, there is no reason to believe that progress can’t also be made on lung cancer. Together, we can help change the lives of those individuals and their families battling lung cancer for the better.