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LaurenH

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Blog Entries posted by LaurenH

  1. LaurenH
    Allison Doan has been on a long journey of self discovery, from a life of elite privilege to a brief time in federal prison, and then a battle with stage IV lung cancer. Through years of ups and downs, and finding forgiveness and strength she didn’t even realize that she possessed, Allison has remained determined to share a message of hope.
    Allison’s broken road has led her to a place of peace. She’s written an inspiring memoir, Bruised and Beautiful, which will be published later this month. By sharing her story, Allison hopes to inspire people that it’s possible to get through life’s hardships with love, faith, and trust.
    “I wanted to write the book when I was facing prison because I knew that I was going to take something horrible and scary and turn it into something good. I wanted to convey a message of hope that you can face anything with God on your side. When I started writing, I thought I’m going to end it here, and then the cancer struck,” says Allison.
    She describes her cancer diagnosis on her Caring Bridge site:
    “In early November 2014, I noticed a large lymph node on the right side of my neck. I was also having some pain with breathing and a dry cough. After some time had passed and no progress from antibiotics, my primary doctor ordered an ultrasound and several CT's which would reveal some concerns.
    The CT had shown 3 large lymph nodes in my chest (mediastinum area), 3 nodules in my lungs and 2 nodules in my thyroid gland. I was referred to an oncologist who ordered a biopsy on December 29. I was preparing myself for the news of possible lymphoma or squamous cell carcinoma according to what the doctor said. My doctor informed me that I have what looked to be medullary thyroid cancer a very rare form of thyroid cancer. A blood test was ordered to confirm this and a PET scan to see where the cancer might have spread.
    I began the arduous task of research to find those doctors that might have a specialty in this area. We decided to head to MD Anderson in Houston for a second opinion. After more testing and another biopsy it was confirmed that the cancer was actually coming from the lung. They diagnosed me with Stage IV neuroendocrine lung cancer which is incurable.
    After the shock and fear subsided I began to cling to my strong faith in our loving heavenly Father who holds me and this situation in His loving hands. Jeremiah 29:11 'For I know the plans I have for you sayeth the Lord, plans to prosper you and not to harm you, to give you a hope and a future.'”
    Realizing that her story wasn’t complete, Allison continued to write while undergoing treatment, hitting some roadblocks along the way. Allison says she “learned to navigate through the world of a cancer patient: days of normal, days of doctor visits, days of feeling great, and days of feeling crummy. Lung cancer is an up and down journey of new treatments. Then they stop working and you try something else.”
    Allison’s husband and care partner, Keith, has been by her side since the moment of her diagnosis. The two were married while she was undergoing treatment and planned their honeymoon in St. John in between clinical trials.
    Allison shared her story with country music artists Dave Fenley and Ray Johnston, who penned a song in her honor. The song, called Bruised and Beautiful (Alli’s Song), is full of grace and gratitude. It carries Allison’s powerful message of living each day to the fullest and trusting God.
    Part of proceeds from book and song will go to LUNGevity Foundation. LUNGevity was the first organization that Allison found when she started looking for online support after her diagnosis. The song Bruised and Beautiful is available for download on iTunes. Allison’s memoir of the same title, will be published in June 2017.
    In May, Allison entered hospice care to help with symptom relief and quality of life. She tells her family and friends that she’s staying “Allistrong” and that she’s humbled by the love, support, and encouragement she’s received. “Above all,” Allison says, “life is worth living.”
     

    Allison and her husband Keith, with their children Daniel, Peter, Megan, and Grant.
  2. LaurenH

    Ashley Rickles

    By LaurenH,

    “I’m sorry, sweetheart these are tumors in your lungs and a form of lung cancer”.
    These were the words spoken to a vibrant, healthy 36-year-old female on October 19, 2017, by the thoracic surgeon. I knew that things were probably not good when he came in and asked if I was alone. Unfortunately, I was alone. Looking back, that day seems like a blur. I remember the ladies at the checkout desk asking how I was doing as they ask so many patients all day long. It’s mere customer service, right? I never made eye contact and mustered enough energy to say the word “fine”. I was far from fine, but I just wanted to get out of there.
    I never cried in the doctor’s office that day, but walking down that winding hallway and through the parking lot felt like I was carrying cinder blocks for shoes around my feet. The minute I got in my car and closed the door was the moment that I completely lost myself. I have cancer. I am going to die. My parents are going to have to bury their only child. My world felt like it had crashed.
    The days and weeks ahead were just amazing considering my new circumstances. People loved on me like I had never been loved on before. I received cards and texts and all sorts of support, but a part of me wanted to tell them that I was still the same person and I appreciated the cards of support, but that I wasn’t dead yet. Please hold the flowers too.
    My lung cancer diagnosis was a complete shock as it is to so many. However, I was asymptomatic and cancer was the last thing on my brain. I was hospitalized for a Bartholin Cyst. I had my yearly exam already scheduled with my OB/GYN and this exam was far from routine. I explained to the nurse that I was in pain and was running temperatures between 101-103⁰. I visited the local emergency room twice to attempt to acquire some relief and was incorrectly diagnosed. My OB/GYN admitted me to get antibiotics started quickly and mentioned a minor surgery, but before I went to the hospital, he wanted me to have a CT of my abdomen to identify the cyst prior to any procedure.
    Thankfully, the tech caught just the lower portion of my lungs on that scan and the radiologist noted lung nodules.  When I went back to my OB/GYN for my check up, he mentioned the lung nodules and ordered a full chest scan. He informed me that people had benign nodules and they could be there from my severe infection, but that he wanted to just make sure that it wasn’t anything.
    The next day he called me to inform that the nodules were still there and he would like for me to see a Pulmonary Specialist.  I agreed and the Pulmonary Specialist was very concerned about the number of nodules in my lungs which were over 100 scattered across both lungs. He conducted a bronchoscope and a needle biopsy for which both were non-diagnostic and I was then punted to the Thoracic Surgeon. The Thoracic Surgeon removed three wedge sections and sent the pathology off to Mayo Clinic in Arizona.
    After further molecular testing, my oncologist educated me on the different mutations and the path of treatment that would be taken for each of them. It was determined that I was Stage IV due to both lungs being involved and was positive for T790M. I began Tagrisso as a first line on November 11, 2017. After 6 months on this drug, my last scans read “barely perceptible”. I will keep taking Tagrisso until resistance occurs and hopefully there will be another inhibitor to take its place.
    When I was first diagnosed, I would literally wake up in the night in a panic. I couldn’t sleep, eat or function normally. I started browsing the internet for support groups and pages as well as social media. I found the LUNGevity private patient groups on Facebook and asked to be added to every single one of them. I began telling my story and people started responding to me and sharing their stories. Strangers were sending me encouraging private messages. I saw people living and thriving with an incurable, life-shortening disease. I found hope. I started sleeping and not crying so much. Finding those support groups really made the initial journey a bit easier.  Although we were strangers, we were brought together by a common bond. I’ve since been able to meet some of those people in person through the HOPE Summit and my “family” has grown by leaps and bounds. I would have never met these incredible people without lung cancer.
    Receiving a lung cancer diagnosis is not something any of us would have willingly signed up for, but I am thankful that I was able to find out before it spread all over my body and treatment options were expunged. I am also thankful for the perspective shift. I now know what it means to live each day with intent. The days of merely existing are over. It’s time to live and love life to the fullest because I now understand the value of each day that I am given.
     
     
     

  3. LaurenH

    Don Stranathan's Story

    By LaurenH,

    I am now on disability, fighting my cancer is a full-time job. In my past life I was the Business Development Manager for a technology company in Rohnert Park, CA. When not doing advocacy work you can usually find me in a spin class or out in Mother Nature hiking or biking with my friends.
    I was dx with Stage 4 Lung Cancer in June of 2009. Since then I have done radiation, six cycles of chemotherapy Taxol, Carbo and Avastin for the lung cancer. That was followed by six cycles of Genzar for metastases to my liver. In March of 2010 because I was non-small cell adenocarcinoma I was given a targeted therapy (Tarceva) to try.  At that time it was less expensive to try the medication and see if it worked than sending the tissue out for testing, Tarceva kept me stable for over six years.
    During those years I was given x-rays and CT scans that showed no change in the tumors in my lungs, so it was thought that since the Tarceva was working so well I had the EGFR mutation. As I became more aware of genomic sequencing and knew my tissue had been saved I requested that it be tested for the basic mutations EGFR, ALK, after checking I was told there was not enough tissue for testing.
    That was also about the time I realized Tarceva wasn’t going to work forever and I probably needed a plan B. Having more knowledge about genomic sequencing I knew high on that list should be a new biopsy to have my tumor tested.
    In November of 2015 I was working on my friend Tim’s ranch and after a long day of shoveling decomposed granite I notice when Tim and I retired for the night my left leg was swollen.  I post everything on social media, so when I posted a picture of my leg I received more than one suggestion it might be a blood clot and I should have it scanned. That scan triggered my Oncologist to order a CT scan the following week and that scan revealed a 1.2 CM tumor in my left lung.
    This is when my plan B kicked in. Before requesting a needle biopsy of the tumor I wanted conformation the cancer hadn’t metastasized to any other location. So first I requested a PET scan, followed by a bone scan and a brain MRI. It was an all-clear, so now I knew it was only the new ½ inch tumor in my left lung I had to confront. 
    In December of 2015 I had a needle biopsy performed. I asked to speak to the surgeon performing the procedure. He came in as I was being hooked up with an IV. I stated to him that when he was in there snapping away to please don’t be polite, take as much as you like. He shared with me he was just given the request for the biopsy and didn’t know my story. I explained the tissue was going to be for genomic sequencing and I needed as much tissue as possible. After the procedure he came into recovery room with a big smile and shared that I would be proud of him. I knew from my research genomic sequencing takes a larger sample so didn’t want to go back for a second procedure.
    I post my entire cancer journey on social media and have connected with doctors, scientist, nurses and bloggers, also concerned friends and family that all care about my wellbeing.  So I know if I post my treatment plans I will hear from someone if I am off track.
    I posted about my tissue biopsy and I received a private message from my friend Bonnie J. Addario the founder of the Bonnie J. Addario Lung Cancer Foundation, she asked if I was sending the tissue to Foundation Medicine? I said I didn’t think my healthcare provider would cover the cost. She gave me a person to contact and within a couple of days my tumor was on the way for testing. Foundation Medicine said they would bill my insurance and if there was an issue I could apply for financial assistance, but my wellbeing was there first priority.  
    I had the results within two weeks of Foundation Medicine receiving my tissue sample. I was very impressed with the report, over 24 pages. It discussed my alterations and statics about my alterations, and even ones that I had expression for that did not yet have treatment protocols. The report also listed FDA approved treatments for my alterations and all the clinical trials that were available.
    Since my girlfriend Penny Blume passed in 2014 from small cell lung cancer I have dedicated myself to advocating for lung cancer research and awareness. I became a Consumer Reviewer for the Department of Defense Lung Cancer Research Program in 2013 and advocate for Lung Cancer groups like the Lungevity Foundation, Team Draft and involved with Lungevity Foundation Lifeline support program which is one on one support for newly diagnosed patients.
    My connections with these groups have put me in touch with some of the top doctors, researchers and advocates in the lung cancer community. With my Foundation One report in hand I set out to look for a second opinion. I was shocked to find out after being stable on Tarceva for six years I had none of the common mutations, including EGFR. What showed up on the Foundation One report was NTRK1 without fusion and PIK3CA.
    I was able to connect with Dr. Jeffery Engelman at Mass General Hospital for a second opinion. Dr. Engelman reviewed my reports and agreed with my decision that Opdivo (Nivolumab) was my next best option; I am now on my eighteenth infusion and feeling great and again have stable disease.
    When I was diagnosed in 2009 with stage 4 non-small cell lung cancer I was given 8-12 months to live. It is because of precision medicine that I am still writing my story almost eight years later, and still mountain biking and enjoying life to the fullest.
    Penny never had the opportunity to benefit from precision medicine or treatments like immunotherapy. Penny passed on 1-21-2014 at my home in California surrounded by her family.
    My last promise to Penny was I would continue to advocate for lung cancer research and awareness. This opportunity to share our story helps me keep that promise to her, so I thank you.
    Be well,
    Don Stranathan
    Stage 4 Lung Cancer Survivor
     
     
     
     
     

  4. LaurenH

    Carole Baker's Story

    By LaurenH,

    My lung cancer diagnosis came as quite a shock to my family, my doctors, and me as I’ve always maintained a healthy lifestyle. I exercised regularly, ate healthily, never smoked, and enjoyed a variety of outdoor sports and other activities with my husband and our three children. I worked as a learning specialist for children ages K-8 and loved my job. Everyone I was close to commented that I was “the healthiest person they know.”
    But in March 2011, after worsening back pain, I visited my physiatrist who ordered an MRI. I figured I had a disc issue with my back or created an injury from too much sitting during work. When I saw my doctor for the results, she was speechless; she told me my upper body was "riddled with lesions." I said there must be some mistake, that the scan was someone else’s.  As the doctor insisted there was no mix-up and this was truly me, I felt as if the floor had given way under me, a feeling that never seemed to fade from my day-to-day experience.
    I was 54 years old. A few days later, I was diagnosed with Stage 4 non-small cell lung cancer. Since I was an otherwise healthy, active, never-smoker, the doctors at Memorial Sloan Kettering Cancer Center predicted I would have the EGFR mutation, and the biopsy results proved they were right. The targeted therapy, Tarceva, shrunk my tumors, and with tolerable side effects, allowed me to continue leading a relatively normal life. I even took up sculling, a sport that I had always aspired to learn.
    However, I was disappointed when only after 9 months my cancer figured out a “way around” the Tarceva, which is expected for targeted therapies (referred to as acquired resistance). Thus, began my participation in a series of clinical trials and chemotherapy, all with mixed results and, at times, difficult side effects, which forced me to retire from my work which I truly loved and still miss a lot.
    One bright period during these trials was a 14-month durable response from a trial combining Tarceva and the immunotherapy drug called Nivolumab, also known as Opdivo.  Unfortunately, after 14 months I had to be quickly removed from this trial due to adrenal failure and colitis.  In addition, I have been taking blood thinners since the diagnosis because of a DVT that was found at that time, and a couple of years ago I had a brain tumor surgically removed. My latest battle is with Leptomeningeal Disease, against which I hope to beat the odds once again.
    Throughout my treatment, I’ve taken advantage of different integrative health services to help manage symptoms and side effects, such as acupuncture, counseling, support groups, and meditation. I can’t say these endeavors were always helpful, but it was important for me to try to find alternate ways to manage symptoms, both physical and emotional.  However, over time my stamina began to wane, and my sense of self efficacy began to diminish. It became increasingly frustrating not to be able to do the things I always enjoyed. The treatments and their side effects can wear you down.
    Initially, I struggled to find camaraderie with other survivors who have the same mutation as mine. Social media has been particularly helpful, especially in the beginning when I was trying to learn about different treatments and find a community. LUNGevity, Cancer Grace, and Inspire, and Lung Care Alliance were all useful sources of information and support.
    My husband has been a great support and care giver. Initially, he dug into the research to learn what treatments were in development, so we knew what was in the pipeline. Moreover, my children have also been there for me. Even though they’ve grown up and don’t live at home anymore, they still come to visit me as often as they can. It has been difficult for me to accept not being able to participate in their activities and lives the way I was able to when I was healthy. It has been a continuing effort for me to feel “a part of the game.”
    If I could share my experience with someone newly diagnosed, I would recommend getting as much information as you can from credible sources and not being afraid to get second opinions. It’s best to be treated at a major cancer center even if it means traveling because the research experience, depth of knowledge, and specialists they provide are cutting-edge. I would also recommend participating in clinical trials if they’re an option, as well as trying to find people to connect with who are going through similar situations.
    Since my diagnosis, life has been a roller-coaster ride of living with uncertainty and trying to function amidst toxic side effects. I try to appreciate the good days and keep active. This spring will be my seventh-year anniversary living with Stage IV lung cancer. I am grateful for those who are raising awareness of lung cancer as a growing epidemic in non-smoking women and am excited to share my story to help other patients. I am especially interested in helping to erase the stigma that lung cancer is only a smoker’s disease, and hopefully increase research funding to the level it should be.


  5. LaurenH

    Amy Richard's Story

    By LaurenH,

    For the past 11 years, I’ve helped treat lung cancer patients as an RN in a cardiothoracic practice. Then last October, I developed a bad cough that lasted over a month. It was cold season, and my co-workers and I thought it might be pneumonia or even bronchitis. No one suspected it could be lung cancer, since I’m a nonsmoker and haven’t been exposed to common risk factors like asbestos, radon, or pollution.
    I had a chest ray taken, which showed fluid around my right lung. The tests of the fluid didn’t uncover anything extraordinary. I didn’t look sick, but I felt fatigued and at times, I had difficulty breathing. A few days later, I had a CT scan, which supported the pneumonia diagnosis, but it also showed a thickening on my chest wall.
    The doctors drained the fluid and tested it twice. Both times, the results came back negative for cancer cells. This didn’t completely rule out the possibility, but it gave us reasons to be hopeful. I started taking antibiotics and steroids, which were prescribed by a pulmonologist. But the second CT scan did not show any improvement.
    My first surgery was scheduled for late January. The doctors thought I had an infection and that they’d be able to clean it out. But during surgery, they discovered growths in my lung that had expanded into my chest wall. The hospital lab confirmed that it was lung cancer.
    My boss, cardiothoracic surgeon Carmine Frumiento, and my colleague, Danielle George, a longtime friend and physician assistant who I work with every day, had to give me, my husband, and my family the heartbreaking news that I have advanced lung cancer. It sounded so surreal that at first, I thought I was dreaming. I have a 6-year old daughter and a 2-year old son.
    All of the sudden, I went from being a care provider to being a patient. I had the surgery, and then later that week, I traveled to Massachusetts General Hospital to meet with some of the best specialists in the country. Danielle traveled to Boston with me and my husband, Chris. Before we left, Danielle and Dr. Frumiento helped us prepare a list of questions to ask the doctors at Mass. General.
    The doctors at MGH recommended starting a new targeted therapy without chemo or radiation. The results have been very promising on patients with my genetic mutation. But since the medication is so new, my insurance would not pay for it unless I tried an older treatment first. In order for her insurance to approve the new treatment, I would have to progress on the old treatment, or suffer from intolerable side effects. It felt like I was on an emotional roller-coaster. Fortunately, my colleagues helped me appeal the insurance company’s decision, and we won.
    I still work as a nurse, but I’ve cut down to just mornings, since I get very tired by the afternoon. I’m very grateful for the support of my work friends, who have become like extended family. They’ve helped to make sure I’m getting the best care. I realize that not all patients have those strong connections, and how important it is to advocate for yourself.
    I’ve been fortunate to have incredible support from my family, friends, and community. They’ve helped with everything from meals to child care to raising funds to help pay for my medical expenses. And my family was selected as the beneficiary of the Celebration of Courage Co-ed Hockey Tournament earlier this month. My husband has played in the tournament for many years to help support and raise funds for families affected by cancer. Now, our family is affected by cancer.
    It is likely that my cancer will never go away, but I have been told that the genetic mutation cannot be passed down to my children. The goal is to turn my cancer into a manageable chronic disease that I can live with until better treatments are available.
    I hope my story will raise awareness that lung cancer can happen to anyone, even young nonsmokers. It’s a fact I never fully realized myself, until I was diagnosed. There is so much blame and stigma surrounding lung cancer. I want to help raise awareness about the resources that are available for anyone who is diagnosed.
     

  6. LaurenH

    Ron Singleton

    By LaurenH,

    This story is about my encounter with cancer, which happened in 2014. I had a near-death experience, and was rushed to Kaiser Zion medical facility in San Diego, CA. My doctor, Dr. Tomssi met me in the ICU and let me know that my body was struggling with issues regarding the bowel. I was excreting dark colors, almost purplish in color, which indicated blood. I had lost about four pints of blood and it would have led to death. I think God saved me from that near-death experience. In February of 2014, Dr. Tomssi found evidence of cancer from lab tests and let me know about the results. Of course, I was very upset, I believed that my future was near its end. I was in shock, and to add more to it, I was required to use colostomy bag, receive radiology for chemo. All in all it was a shocking experience, and I naturally rejected the idea, because it was so uncomfortable. Dr. Tomssi encouraged me to explore those options because it would save my life, and prevent the cancer from increasing its stages. Dr. Tomssi mentioned that he had found something on my right lung that could be unstable later, so I should consider preventive measures. Dr. Tomssi encouraged that I lead a stress-free life and explore healthy lifestyle to prevent the stages from increasing. I naturally agreed. I had gone into bouts of depression and Dr. Tomssi’s office had tried to reach out to me for appointments and follow ups, to which I neglected. At one point I gave in and went to see the doctor, Dr. Tomssi was very humble and gave me positive spirits where he encouraged me to get a check-up for any cancer indications. Two days later the office reached out to me via phone and told me that I had indications of cancer in the rectum. I decided to proceed with radiation, chemo, and mental health counseling.
    I had regularly attended chemo therapy and saw Dr. Zimmer for the process, but my wife was controlling, and did not agree to the entire process. She did not believe the therapy would help fight cancer, my wife had the family move to Virginia then in Wisconsin during the process, so I lacked stability and support from home. My mind and body was equally weak and it felt like I was always in a body of water, my memory was always lapsing. My memory went away as did my body, it seems to be about sixty percent loss. In February of 2019, I moved back to San Diego, and Dr. Zimmer was my doctor again, and we had a scan again. It turned out that my cancer had progressed to stage four and instead of one spot, I now had six spots. I was encouraged to sign up for the LifeLine Mentor program and I was assigned with Melissa Crouse who is very humble and encouraging to me. My family is all very worried about me and is grateful that I have this kind of support from different agencies. This is especially important seeing as I had lost my son not too long ago due to suicide as a result of PTSD from the armed forces. I value the support I get from LUNGevity.org, and that place is where I feel at home, and safe.

  7. LaurenH
    I was 52, a wife, mom and teacher when diagnosed with stage 3a NSC Adenocarcinoma lung cancer in September 2012. I had no symptoms and did not fit the criteria of a lung cancer candidate.
    An observant radiologist had noticed a small shadow in my lower right lobe when viewing an unrelated abdominal scan in 2010.  Because I didn’t fit any of the LC criteria, no specialist or surgeon thought that it would be lung cancer.  They adopted a “wait and see” plan using two six-month scans and then moved to a one-year scan at which that point indicated that my “nothing” spot had in fact grown and was probably lung cancer.
    My world had been turned upside down.  I quickly had surgery to remove my bottom right lobe and several lymph nodes. Unfortunately, cancer was found in the lymph nodes and the tumor. This led to four rounds of chemotherapy (Cisplatin and Navelbine) and 25 treatments of radiation along with all the mental and physical issues that many people can only imagine.
    Cancer can be a very lonely disease even when you have a ton of support. I couldn’t find survivors in my area so I began searching out on-line groups that I could communicate with about my disease.  This is where I discovered LUNGevity! The members of this group and all those associated with the organization wrapped their cyber arms around me and welcomed me into their world.  This was literally a life-saving experience for me and continues to be part of my daily communication. 
    Two years ago, people in the group began speaking about the National HOPE Summit in Washington, D.C. and how beneficial it was for both patients and caregivers.  Because I am Canadian, I inquired as to whether my husband and I could attend. I was told of course we could!
    My husband and I attended HOPE Summit and that experience has changed my life.  Meeting other survivors and hearing from physicians and researchers empowered me to return to my own country and begin asking questions about lung cancer research and most importantly, begin my work as a lung cancer advocate.  
    The Summit allowed me to meet so many people who are advocates not only for their own health but also for lung cancer research and advocacy work. These people meet with politicians, organize, and participate in lung cancer fundraisers and teach so many of us about treatment options. 
    Although Canada does not have as large a network, there is a small group of us who have been empowered to meet with politicians, educate and support others with the disease and spread the word about early lung cancer diagnosis, all because of our experience at a LUNGevity HOPE Summit.
    Education is power but knowing you are part of a strong, supportive, and knowledgeable group of individuals is invaluable.  Thank you LUNGevity!

  8. LaurenH

    Lisa Przybyla’s Story

    By LaurenH,

    In December 2016, I started experiencing a lot of shoulder pain and then back pain leading to shortness of breath.  I went in for an X-ray and MRI, and was told I had pneumonia. I knew that wasn’t correct because I hadn’t been sick enough to get pneumonia.  I spoke to my doctor and insisted on being seen again right away. I was sent to the hospital to have a CT scan, which showed fluid in the lining of my lungs. I had the fluid tapped for testing and it was bloody. I was referred to a thoracic surgeon and underwent surgery to have the fluid drained in March of 2017.  During surgery they did a scope to look around and found and removed a cancerous mass.  I was diagnosed with Stage IV adenocarcinoma lung cancer. 
    I was in the hospital for five days. When I got out on a Friday, I met with my oncologist. They decided to test the mass for genetic mutations. My oncologist called me at home to share the results. I was expecting bad news, but she said she had good news. Genetic testing showed that my cancer was caused by the ALK gene mutation. She told me that having a genetic mutation was like winning the lung cancer lottery because there were very effective treatment options.
    At the time, Alcensa was still a second-line treatment, but my oncologist and I pushed for me to be able to start taking the drug. It was so new that I was one of the first patients at my hospital to start taking it. Just a few weeks after I started taking Alcensa, it was approved as a first-line treatment.
    I have some physical challenges that impact me.  Some of them are shortness of breath, muscle pain and fatigue.  I have nerve pain from my thoracic surgery as well.  I am also dealing with mental challenges.  I am working fulltime however, I struggle with memory loss, focus and vision issues, all of which are side effects of my treatment.  I also deal with some depression.  I explain it to family members as mental torture.  You try to enjoy living but, you are always aware that your life can be cut short at anytime.  The cancer consumes your thoughts 24/7.  That is really hard.
    I recently became a member of the ALK Positive Facebook group, which led me to LUNGevity Foundation.  ALK Positive has partnered with LUNGevity for a research grant for our cause.  It’s a great partnership. I wish I would have known about LUNGevity and the ALK Positive online support group right away. LUNGevity really advocates for patients.  They are such a great source for support and information. I noted that they share survivor stories and I immediately decided that I wanted to share my story with others.  The more we talk about lung cancer, the more others learn and we can get rid of the stigma.  Putting faces to this disease makes a real impact.
    I would tell a newly diagnosed patient to reach out to support organizations like LUNGevity.  Knowledge is power and there is hope.  The more you know about this disease and advocate for yourself the better off you will be.  It’s a scary road but a little easier when you find good support sources. 
    Survivorship means I am living with this disease.   I hope to keep living with this disease for many years and provide support and advocate for others.  I do not want to sit and wait, I want to take action to help myself and others as much as possible.  We need to fight for more research funding and to make others aware of this disease.
    I hope to touch others with lung cancer and inspire them to share their story and find their voice to advocate.  I want to get the word out about ALK lung cancer and remove that stigma that it’s a smokers’ disease.  Whether you smoked or not doesn’t matter. If you have lungs, you can get lung cancer.   I hope that as others find their voices too, we can get the word out about how we lack sufficient funding for research.  That is really important to me.  433 people die each day of lung cancer – we have to change this!
     
     
     
  9. LaurenH

    Melissa Fosco's Story

    By LaurenH,

    Back in 2009, my mother-in-law, Sue Fosco, was diagnosed with lung cancer. It came as a huge shock to our family. Sue was a very healthy oncology nurse and non-smoker. At first, she thought she had a cold or sinus infection, but it wouldn’t go away, so she went in for further testing. The people administering the tests were her colleagues and friends at the Edward Cancer Center in Naperville. Sue was diagnosed with Stage IV bronchoalveolar adenocarcinoma in both lungs.
    Sue was a wonderful wife, mother, grandmother, daughter, friend, and nurse. When she passed away in 2011, my husband Dominic and I were in a fog. The day she passed, LUNGevity found us through an email from the Carlinsky family. Dominic worked with Mark Carlinsky, whose wife Lisa passed away from lung cancer in 2008. Lisa had been Sue’s patient at Edward Cancer Center. It seemed like there were a lot of connections drawing us to LUNGevity. We looked into LUNGevity and realized it was a great organization, so we set up a page for family and friends who wanted to donate money toward lung cancer research. In November, we decided to walk in Breathe Deep DuPage to help keep her memory alive.  We started a team in Sue’s memory, named “Steps for Sue.” Our team has been walking ever since.
    In 2013, the event coordinator Michelle Bowles was looking for someone to be a co-chair for Breathe Deep DuPage. Mark recommended me and Michelle sent me an email. As I read the email, I thought, this is my next calling. Michelle and I co-chaired the event in 2013 and 2014. In 2015, Michelle was ready to take a step down, so I became the coordinator.
    Sue’s loss has inspired me to become involved with LUNGevity Foundation and to raise awareness to fight the stigma surrounding lung cancer. I want the question “Was she a smoker?” to disappear. No one deserves to get lung cancer. I want people to know that lung cancer isn’t just a smoker’s disease. Anyone with lungs can get lung cancer.
    The most rewarding part of being a volunteer event coordinator is seeing people come to the walk every year. We have had many teams walking for many years and for other teams, it’s their first year.  I want the event to be meaningful and impactful for each team that walks. It’s so important for people to come and see survivors and for people to celebrate the memory of the person they’ve lost. Seeing more survivors at the walks each year shows us that what we are doing is making a difference. I’m happy that more people are living longer with lung cancer because of early detection and targeted therapies and the work LUNGevity is doing.

    Sue Fosco with her granddaughters
     

    Melissa with her family
  10. LaurenH
    I learned about my lung cancer in a roundabout way in the summer of 2017. I started having headaches and experiencing vertigo. I also noticed some slurred speech and trouble with fine motor skills like writing. I went to a series of doctors to try to determine the cause, including my PCP, an ophthalmologist, a massage therapist, and an ENT. Eventually, a neurologist ordered an MRI. I went in for the MRI and afterward the radiologist wanted to see me to “look at something.” From then on, it was like a cascade, with lots of people coming in and out of the room conducting various procedures and making calls to my wife. I ended up getting the news from the attending ER physician and several interns or residents. They still had to do a biopsy to be sure, but based on the MRI and chest CT scans, they were pretty sure it was lung cancer.
    I don’t remember being floored by the news and I didn’t collapse or anything. Maybe I was numb to it but in the moment, it seemed obvious like, “Of course that’s what it is!” I actually felt bad for the residents and interns who had to tell me.  It was like they were training on how to tell someone they have cancer. My wife, Judy, and my sister-in-law, Mary, who is an RN, arrived and I was grateful to have them there for support. Two days later, I underwent surgery to remove the largest brain tumor. They did a biopsy using that tissue, which confirmed my diagnosis: stage IV adenocarcinoma.
    Judy and Mary made appointments for me with a thoracic oncologist and a neurological oncologist at Memorial Sloan-Kettering. Initially, the plan was for me to start chemotherapy and radiation. My oncologist also ordered the MSK-IMPACT genetic test panel to identify any treatable mutations. The day before I was to start chemotherapy, my thoracic oncologist called to tell me that the test came back EGFR positive and I didn’t need to go through with chemo. She told me that I was a candidate to take Osimertinib, a targeted therapy drug. I still had to do five rounds of radio-surgery as well, but the treatment options changed completely. There was no question about whether I was going to take that or not.
    One of the biggest challenges was recovering from surgery and getting back to work.  That wasn’t easy, but the support from my family, friends, and employer has been tremendous.  I have the good fortune to work for a company that puts people first, and they have been very accommodating.  From the beginning, my large family started coming to visit and help with things like cleaning our house and delivering meals.
    I’ve been a pretty avid runner for several years.  Before I was diagnosed, I ran 8 ultra-marathons, 7 full marathons, 10 half marathons, and a bunch of shorter races. Getting back into running regularly took a back seat to recovering from my surgery and the initial rounds of radiation. I was able to start running pretty regularly about 2 months after diagnosis. So far this year, I’ve run some 5Ks and trail races, three half marathons, one full marathon, and one 50K ultramarathon. The marathon, especially, was a big milestone for me.  I ran the New Jersey Marathon, which I had finished three times before cancer. Being able to run it again after my diagnosis was a really uplifting and fulfilling experience for me. I’ve been fundraising for Fred’s Team, the running charity for Memorial Sloan-Kettering Cancer Center.
    Since my diagnosis, I’ve done a lot of research and made a lot of connections online, both of which have helped me understand and deal with cancer better.  LUNGevity’s Facebook groups have opened up a large network of people who are more than happy to provide support and information, answer questions, and share their experiences.
    I think in the past, and to some extent still today, most people only considered a ”survivor” to be someone who had been diagnosed with cancer, underwent treatment, and was in remission or totally cancer-free. That definition leaves a lot of people out, myself included, who are on long-term treatment.  To me, a “survivor” is anyone who has been diagnosed with cancer and is still alive.  Some of us may never be totally cured but we could survive for a long time thanks to new treatments liked targeted therapies.  Hopefully, we’ll survive cancer long enough to live a full life and eventually die of something else, like a skydiving accident at the age of 97!
     

  11. LaurenH

    Nina Beaty

    By LaurenH,

    I was first diagnosed with small cell lung cancer (SCLC) in January of 2014 from a biopsy of the tumor that was sitting on top of my left lung.  I had no symptoms I was ill yet I was urged by a radiologist who was a friend of the family to get an early lung cancer detection CT scan of the chest because I had been a smoker years before and grew up in a household of heavy smokers. So for me, it came as a total shock when I was told my diagnosis and “to get into the city for treatment, ASAP. “  For the next two years, I went through the standard treatment for limited stage SCLC, -chemo, radiation to the tumor, and prophylactic radiation to my brain. Good news, the tumor had shrunk but bad news, a new one had begun to grow in my abdomen. Now there was no option left for me except to go on an immunotherapy clinical trial, which I began in June 2015. I know I’m one of the lucky ones. I’ve survived over two years thanks to being enrolled in the clinical trial with the bonus of having virtually no side effects.
    I first heard about LUNGevity through my oncologist when he invited me to be one of his “patient-guests” at LUNGevity’s Gala in 2016.  Encouraged by the speakers and to learn about more about LUNGevity’s focus on increasing the quality of life for cancer survivors and their caregivers, I contacted Katie Brown, LUNGevity’s Vice President of Support & Survivorship, to become a volunteer. I wanted to support other SCLC patients who were probably as confused and conflicted about their choices as I was when I was first diagnosed with this less common type of lung cancer.
    Katie gave me information about “LifeLine”, LUNGevity’s peer-to-peer support program that matches patients and caregivers to mentors with similar diagnoses. LifeLine mentors forge a personal connection by getting to know their mentee, offering words of encouragement, and by sharing aspects of their own cancer experiences. LUNGevity connected me to my first LifeLine mentee in early 2017.
    When I’m on the phone with mentees, I try to get a quick take on what that individual would like to get from speaking with me. I usually keep my personal saga with SCLC brief so the mentees have a chance to tell me what’s been on their mind. Sometimes, a particular part of their cancer situation is upsetting or causing frustration, while other times, they would just like to talk it out and have me listen.
    If I hear we have points in common, I’ll say something like “I get it. X-Y-Z happened to me, too!” Then I reassure them that they will get though it and find the solution that’s right for them.  Some mentees just want a one-time chat to know someone else has survived the same illness.  Others, who don’t have anyone they feel close to, might call me more frequently.
    One time I called Katie to get her advice on how to handle a situation that I felt was beyond my capacity to deal with.  She was very understanding and together we came up with workable solution. So if you become a LifeLine mentor, don’t be afraid to reach out to the LUNGevity staff. They’re there to support you, too.
    The most rewarding thing about being a mentor is hearing someone newly diagnosed with SCLC say,  ”Oh I’m so glad I talked to you. I feel like this is doable now. If you survived, maybe I can too.”  Hope is the most precious gift I could ever offer somebody, which may sound a bit drippy, but it’s so true.  I get to offer hope every time I tell my story that I have survived longer than I, or anyone else, would’ve believed possible.
     

    Photo credit: Ben Hider for the CURE Magazine
  12. LaurenH

    Kara Capasso

    By LaurenH,

    When my dad, Fred Gontarek, was diagnosed with lung cancer, I felt lost. I wasn’t sure where to turn. I searched the internet as most people do to see what support was out there and what was being done to raise funds for research. Sadly, there were not many local organizations or funds being raised for lung cancer. I vowed to try to change that. I found the Breathe Deep Philadelphia Event was coming up in the Fall of 2011 and knew we needed to be there for Dad and with Dad.
    Team Fred started in April 2011 with the motto “No One Fights Alone” to show my dad how many supporters he had and to give him hope during his battle with lung cancer. Fred fought as hard as he could until he passed away on April 28, 2012. The motto was then changed to “Never Forget” since our memories of him and what he meant to us continues to live on. Team Fred first walked in 2011 with Fred by our side and today we still walk in his memory as he watches over us.
    I first formed a team for Breathe Deep Philadelphia in 2011 and have continued to volunteer each year after that.  This year it is an honor for me to be the event coordinator for Breathe Deep Philadelphia. The Breathe Deep events program provides knowledge and support during a difficult time.  These events give friends and loved ones a chance to gather together to not only raise funds but raise awareness and offer their support.
    The most rewarding part of being a Breathe Deep event coordinator is knowing that I have a part in raising the funds necessary for critical lung cancer research.  My dad was a man who would do anything for anyone and I know that if he were here today he would be right by my side helping in any way he could.  My focus is keeping his memory alive while hoping to positively change the lives of others.
    I hope my fundraising efforts will support life-saving research that is necessary so that one day we can live in a world where no one dies from lung cancer.

    Kara (right) and Team Fred at Breathe Deep Philadelphia

    Kara and Fred dancing at her wedding
  13. LaurenH
    My wife, Heather’s lung cancer was discovered by accident. She was having an abdominal CT scan when the doctor noticed a small shadow on her lower right lobe. She subsequently had a chest CT scan. The Thoracic surgeon felt it was pneumonia scar but it was too small for a needle biopsy so he ordered a PET scan.
    We went for the PET scan and the radiologist who did the scan also read it and told her immediately that she did not have cancer. (It was not until a couple of years later that I actually read the report which indicated that there had been mild FDG uptake in the upper left quadrant of this spot.) She started having follow-up CT scans every 6 months. On one scan, the report came back that the spot had diminished in size. We were excited because cancer doesn’t shrink but unfortunately not informed enough to know that positioning during the scan can make a difference. She was then moved to an annual CT scan.
    Heather had her annual scan in July 2012 and we went to her parent’s cottage at the beach for a couple of weeks. When we returned home there a message on our machine to call the Thoracic surgeon’s office for her appointment. This was a new surgeon as the previous one had retired. She called the office and the receptionist said she was booking her for an appointment to see the surgeon because of the growth in her lung. The receptionist assumed that our family physician had informed us. I immediately called our family physician who was doing rounds in the hospital and asked him what was going on. He didn’t realize that the appointment would be set up so quickly and apologized and we made arrangements to meet at his office. We are fortunate to have such a wonderful family physician who we used as the center for all future appointments and advice.
    Heather underwent a wedge resection on Labour Day weekend 2012 to remove her tumor.  The tumor tested positive for NSCLC Adenocarcinoma and was scheduled for a lobectomy to remove the bottom lobe of her right lung. This operation was performed on the Canadian Thanksgiving weekend in October, along with a wedge resection of a nodule in her middle lobe and Lymph node sampling from the mediastinum and hilar. She was Stage 3a T2N2M0 with metastasis in three different lymph node stations. All her lymph nodes also had vascular involvement. Her oncologist patted her knee and told her that she had a 15% probability of surviving 5 years.  On New Year’s Eve, ending 2012,  Heather began  4 rounds of chemo, Cisplatin and Navelbine followed by 25 radiation treatments.
    This has been a journey with many ups and downs with a few scares along the way but she is currently stable and enjoying life.
     

  14. LaurenH

    Kateri Langseth's Story

    By LaurenH,

    October 30, 2015 will forever be the day my world changed. That day I heard those words that no person wants to hear: “You have cancer.”
    I kept questioning how this could happen to me. I was a healthy, 35 year old nonsmoker, and a mom of two great children. I came to learn that you don’t have to be a smoker to get lung cancer. Honestly even if one was a smoker, would it matter? No one should have to go through this terrible journey.
    Soon after my diagnosis I saw a surgeon and was told that I was not a candidate for surgery, as my cancer had metastasized to the surrounding lymph nodes. Instead of surgery, I was scheduled for 35 sessions of radiation and two rounds of chemo infusion, believing that if the treatment was effective that surgery could be an option to remove the remaining cancer. After my initial chemo and radiation was complete the tumor in my lung had shrunk considerably and lymph nodes appeared to be clear of cancer. Good news, right? Unfortunately, new scans showed that what had been an inconclusive spot on my liver had now grown into a tumor, and my official diagnosis was changed from stage 3b to stage 4. The new tumor meant surgical treatment was no longer an option, and that medicine is my only hope.
    At that time my husband and I realized it was time to get a second opinion, which turned out to be one of the best decisions of my life. My new oncologist tested my cancer for genetic mutations. At the time, I had no idea what he was even talking about. Then I received a call from him on a Friday afternoon stating I have the EGFR mutation. I could hear the joy in his voice. After doing some research I came to understand that this was a very good thing, and within a few days I started to take a targeted therapy called Tarceva. My quality of life is way better than I would have ever thought possible. I’m now 37 and living with stage IV lung cancer, hoping that medicine advances faster than my tumors.
    During my initial treatment I was bitter. I did not want to hear “you can beat this” or “you are the strongest woman I know” or “you are a fighter.” I just wanted to get through my treatment and move on with my life.
    As much as I hate my cancer, it has taught me some valuable lessons. First, it taught me to slow down. I didn’t realize how much I was just trying to get through life, instead of actually living it. Ironically, I enjoy life more now than ever. Second, don’t sweat the small things. Living with a terminal illness helps one understand what‘s really important in life.
     

    Kateri and her family
  15. LaurenH

    Kyle McCarthy

    By LaurenH,

    My Dad was always my Ironman when I was growing up. In 2004, my dad had a persistent cough. He went to the doctor a few times and was finally diagnosed with pneumonia. A year went by and the cough went away for awhile. When it returned, my dad went back to the doctor. He was diagnosed with Stage IV lung cancer. I was 17 at the time.
    After he was diagnosed, my Dad signed up for Heather Saler’s Lung Cancer Walk in Pennsauken, NJ, which eventually became Breathe Deep South Jersey.  My dad didn’t do the full walk, but he was part of the survivor ceremony. I went with him and that was how we found out about LUNGevity and decided to start fundraising.
    My dad passed away in 2006, less than a year after he was diagnosed, but he taught me so much during that time. I saw how strong he was during his battle. He never gave up and gave it everything he had.
    My dad was a photographer. When he passed away in February 2006, my girlfriend (who is now my wife) and I put together a show with all of his photos at a local restaurant. People could come just to see the photos or they could buy them to help raise funds for LUNGevity. The second year, people who were impacted by cancer, either themselves or a loved one, donated artwork for the show.
    My dad was also a runner. He ran several marathons. I ran my first marathon, the New York City Marathon, in 2016. I wanted to strive for something more challenging so I decided to do the Ironman Lake Placid for Team LUNGevity. Lake Placid is the longest running Ironman event in North America and this is 20th Anniversary year, so it will be a great event. It consists of a 2.4 mile swim, a 112 mile bike ride, and a 26.2 mile run.
    Doing an Ironman is going to be the toughest thing I ever attempt. I wake up at 4:30 or 5:00 a.m. and either swim, bike, or run for about an hour, then go to work, come home, and train again in the evening. I’ll be training for about seven months total. I’ll be posting my Ironman journey throughout my training all year long on Facebook. I’ll also post stories of my Dad and news from LUNGevity. And hopefully when I finish that Ironman, I will be wearing something LUNGevity.
    If anything is going to inspire me to complete this Ironman, it is my Dad. The least I can do is try to raise money for lung cancer research in his name. Every dollar counts and every life matters. I hope that my fundraising efforts will make a difference in the fight against lung cancer. Maybe it is the dollar that helps find the cure, maybe it helps give someone affected by this disease sometime of motivation or maybe it just makes people more aware of lung cancer.


  16. LaurenH

    Don Fredal

    By LaurenH,

    I was diagnosed with Stage IV lung cancer in September 2014. Like many people, my diagnosis came as a huge surprise to me and my family. A friend told us about the Breathe Deep Kansas City Walk that was happening in our area. We called our team The Village People because we like to say, “It takes a village” to fight this thing. The Breathe Deep walks provide an opportunity to raise awareness and money in your own community. It’s very powerful.
    I attended my first National HOPE Summit in Washington, D.C. in 2015. Lung cancer is so isolating and overwhelming. Then you get there and meet other survivors and caregivers and experts. I feel like I always leave HOPE Summit with 150 new friends and then I don’t feel so lonely when I get home.
    The next year my wife and I attended the 2016 Hope Summit together, she finally understood how these friends I had been talking about for the last year could be so intertwined with my health and healing.  We made even more friends and keep in touch all year long through social media and other events around the country.
    Once you get to HOPE Summit, it’s so empowering that you want to get involved. I found out about the LifeLine Support Partner program at HOPE Summit. LifeLine is nice because you can work remotely and there’s an opportunity to give back. My mentor, Matt Ellefson, is one of those people who LF relies on to have multiple mentees and he was very inspirational for me because of our similarities and what we’ve been through. It was a very good fit.
    LUNGevity tries to match people based on age, gender, diagnosis and geographic location. It’s always felt very comfortable. I’ve had mentees assigned to me and we usually have a really good talk and maybe hear from them once or twice and that’s all they need at that time. We talk on an as needed basis. Hopefully, I’m encouraging people depending on where they are. A lot of the time, the person is newly diagnosed and it’s very fresh with them. As a mentor, you have to put yourself back in that frame of mind. It’s important to remember that you’re not there to fix their situation. You’re there to listen to what they need and let the conversation evolve.
    The most rewarding thing about being a volunteer is being able to help someone else by sharing my experiences and the ups and downs that I’ve had. If I give any advice it’s always to find a specialist who is an expert when it comes to your diagnosis type or mutation. It’s so important to be very confident in your medical team. Don’t be afraid to get a second opinion. If your doctor isn’t jiving with you, keep looking. It just feels good to help somebody through this because as we all say, it’s really hard for other people who haven’t gone through it to understand.
    When I was diagnosed, I was given 9-18 months. I’m coming up on 3 years and 11 months and my wife and I are going out to Los Angeles next month for the Stand Up for Cancer telecast on my 4th Cancerversary. I hope that my efforts as a LifeLine volunteer will inspire the people I mentor to do the same for others. I’m a big believer in paying it forward. It’s a big world and there are a lot of people affected by this disease.
     

  17. LaurenH

    Alisa Brenes' Story

    By LaurenH,

    Hello there …. my name is Alisa Brenes and I am a 16-year Stage 3 lung cancer survivor.
    I guess you can say my lung cancer journey started before I was born.  My mom, my maternal grandfather and many of his siblings all died of lung cancer.  I am motivated to do my part to end our family history now.
    I have been a lung cancer advocate for over ten years, most of my work behind the scenes, but little by little I’m coming out and sharing my story.  I hope to follow this introduction with more blogs, sharing hope and spreading awareness.
    I was diagnosed in July of 2000, just a few months after my mom passed away from lung cancer.  It still boggles my mind that I was taking care of my mother while the same cancer was growing inside my lung.  I had a third of my lung removed and followed up with chemotherapy.
    I am a single mother of twin boys who were 10 years old at the time.  They were in fourth grade and I didn’t even know if I would be there for their elementary school graduation.  Thanks to God and my amazing doctors, I lived to see my twins graduate from college.  My next goal is to see them happily employed
    I was diagnosed before social media and message boards were around,  the world wide web was fairly new and there wasn’t even google yet.  I felt lost and had never met another lung cancer survivor.  Within a few months the internet started becoming more popular and all that changed.  Somehow (thank you Universe!) I found Katie Brown’s original message board and through that I not only connected with other Survivors, but I was introduced to the first Walk for a Cure (now called Breathe Deep NYC) and have been volunteering ever since.  And if that wasn’t enough to keep me hopeful and connected (and it was …) I was introduced by Katie and LUNGevity to Hope Summit!  If anyone wants to know what it is like to be in a room with hundreds of survivors (but no one ever gets lost in the crowd, somehow we end up like one big family) just come to Hope Summit.  The energy is amazing and you leave the Summit with life-changing knowledge, friendships and Hope.
    This is not a journey I chose or one that I would wish on others, but the truth is I've grown so much through this and have such an appreciation of every day and the friends I now call family that I've met through lung cancer have enriched my life beyond words!  As strange as it might sound to some, I can actually say that my cancer diagnosis brought me many blessings.
    It is my desire to share hope and friendship with other survivors and help spread awareness so one day we will live in a world where no one dies of lung cancer.

  18. LaurenH
    Facing a lung cancer diagnosis changes a person’s perspective about what matters in life and what doesn’t. Being diagnosed with cancer makes you put absolutely everything else to the side, or totally out of mind.  You have the chance to let back in only the things that really matter back into your conscious mind. If you can do that, and spend more time focusing on things that really matter in the present moment, you will have completely changed and improved your mind and your life. I still get caught up in feeling anxious or scared about what might happen in the future and the negative impact it could have on my family, especially my wife and daughters. What’s helped me has been to realize that they are thoughts – they don’t have a physical presence anywhere and if you observe them but don’t chase after them, they go away.
    If I could give advice to someone newly diagnosed, I’d probably want to say a few things.
    1.       Slow down. Information is going to be coming at you really fast and it can be overwhelming, especially with the internet making everything move at hyper speed.  Take your time to digest what’s out there in terms of treatment options, support systems, heavy medical information, etc.
    2.       Get yourself into a respected cancer center as soon as possible. Find an oncologist that you trust and have a good relationship with, and then TRUST that doctor.
    3.       Take everything, except what your oncologist tells you to your face, with a grain of salt.  There is a ton of real, semi-bogus and totally bogus information out there about magical cures and treatments.  Ask your doctor about all of them but, in the end, do what he or she advises.
    4.       Take a step back, look at the road ahead as objectively as you can and try to be practical.  It is the “C” word but, after all, it’s an illness not a curse or a death sentence.  Come up with a treatment plan together with your doctor, follow that plan and do what you need to do in order to stay healthy
    5.       Don’t give cancer more power than it already has by thinking you can’t face it and just giving up.  You can face it.  Maybe not today, or all the time, but eventually and most of the time you can.
    Lung cancer is just the same as any other kind of cancer. It will take the people you love just as heartlessly as any other form of the disease.    It’s really good at taking people away; men and women, smokers and non-smokers, old and young, any race and origin.  In fact, it’s better at that than most other cancers.  We could all get cancer, and none of us would deserve it.  We should fight it with research funding, trials, promoting new and existing treatments, by helping people pay for treatment, and everything else at our disposal. Not giving lung cancer the fight it deserves leaves us all that much more powerless to stop it from taking away someone we love.

  19. LaurenH

    Paige Black

    By LaurenH,

    I was diagnosed in April 2017 with lung cancer (stage 4 adenocarcinoma with malignant pleural effusion). I celebrated my 47th birthday in May. My husband and I will celebrate our 22nd wedding anniversary in July. We have a 12 year old daughter. This is my second stage 4 cancer diagnosis.
    The first was shortly after my husband asked me to marry him. I was 23 years old and had stage 4 Hodgkins. I was treated with a combination MOPP ABVD regimen. My life was placed on pause while I took 24 treatments and tried to make a new normal. After 15 months of chemotherapy, I was given a clean bill of health. The original plan included pinpoint radiation but after consulting the tumor board, my oncologist told me the group decision was to stop with chemo. Now I could plan my wedding and get on with my life. My oncologist and nurse even attended my wedding.
    Years later at a follow up, my oncologist told me that we dodged a bullet by not doing the radiation as many patients were now being diagnosed with leukemia or breast cancer. I remember feeling a cold shiver at the thought that I could have been in that position. We were blessed with a daughter even though I had been told I most likely would be sterile.
    Fast forward to 2017, I had a cold early in the year but could not shake the cough. I was given a couple of rounds of antibiotics, then was referred to the pulmonologist. I had a thoracentisis. The pulmonologist told me not to Google, but I did, not about pleural effusions but about long term effects of MOPP ABVD. The following week, he gave me the diagnosis and I admitted my transgression. Maybe the lung cancer is just the hand that I was dealt, but I can't help but tie it back to the treatment for Hodgkins.
    I have been very fortunate to have wonderful support from my family, friends, and co-workers. I have also had incredible medical care from physicians, nurses, and support staff.
    If any Hodgkins survivors who only had chemo and have also been diagnosed with lung cancer reach out to me, I would love to correspond and discuss histories. Thanks for reading my story.
  20. LaurenH

    Pauline Makowski

    By LaurenH,

    My husband, Allan, died from stage IV lung cancer in June 2009. I was feeling a need to get involved with an organization dealing specifically with lung cancer.  I researched LUNGevity, and thought it was a very worthwhile organization.
    My first experience with LUNGevity was in November 2009. At the time, my daughter, Stephanie was a college student in NYC. She formed a team for LUNGevity’s Walk to Beat Lung Cancer, which later became Breathe Deep NYC.  My son and I joined Stephanie and her roommates at the walk. I was very impressed with the event and the volunteers.  We continued to walk and volunteer for the NYC event through 2013. Stephanie was on the committee for the walk during her college years.
    We wanted to start a Breathe Deep NEPA event in our community. Northeastern Pennsylvania is an area with an above-average rate of lung cancer. So many lives are touched by this disease—those of the patient, the survivors, families, and friends. My major goal is to bring awareness to the community about lung cancer. The event also brings people impacted by the disease together to help raise awareness and critical funds.
    The most rewarding thing about being a coordinator is the great feeling that I am helping lung cancer patients by raising funds to help others survive.  I was so devastated by not being able to help my husband.  Hope is my mantra.
    I hope that our efforts will continue to fund research to find an early detection test, most important, and more therapy treatments.  Also the support LUNGevity offers to patients, families and caregivers.
     

  21. LaurenH

    Terry Gillespie's Story

    By LaurenH,

    Hi my name is Terry Gillespie.
    I am a 13-year lung cancer survivor.  I started my lung-cancer journey back in October 2003.
    In the fall, I am prone to sinus infections, so as usual I got one.  It just so happened this time that I let it go a little longer because I had just lost my job and had no insurance.
    When it got so bad and I coughed so hard that I had a little blood in my sputum, I called the doctor and made an appointment.
    My doctor prescribed the usual antibiotics, and when I mentioned that this sinus infection was worse than normal, and that I must have hurt my throat coughing because I saw a little amount of blood.  She said that she was concerned that I may have pneumonia or TB, so decided to run tests.  That was when my world turned upside down.
    At that time, there was very little information about lung cancer treatments and very grim survival rates.  I had very little support.  After my biopsy, it was confirmed that it was cancer. I told the doctors that I did not want to know what they thought my end date would be.  I was going to die at the ripe old age of 80, in my sleep.  So on we went with the treatment with no mention of a termination date.
    I had my left lung removed, and then I had radiation and chemotherapy.  I was bald and beautiful. I also had some pretty bad side effects.  During surgery, my surgeon accidentally hit my right vocal chord and I was without a voice for two years.  Let me tell you, I can now hit my target directly when I throw things to get attention!
    I have permanent sciatica on my left side.
    I am one of the lucky lung cancer survivors and I have not had a recurrence.
    People tell me that I look great for having lung cancer.  It makes me wonder . . . What do people think that cancer survivors look like?
    The reality is that many lung cancer patients are not so lucky. 
    I chose to be an advocate for lung cancer awareness as soon as I physically and mentally was able.  I decided that I can help make a difference.  My motto was “Nobody Deserves to Die from Lung Cancer.”  I still believe that today.  We have to do whatever we can to raise awareness, to educate people that this is NOT only a smoker’s disease, and to raise money for research to help eliminate lung cancer.

    (Terry, right, pictured with fellow survivor and friend Tommieanne Bolden, at National HOPE Summit)
  22. LaurenH

    Melissa Crouse

    By LaurenH,

    I first became involved with LUNGevity through National HOPE Summit, a survivorship conference in Washington, D.C. Seeing so many survivors and being able to share our stories and gain knowledge made the experience very special. I’m always impressed by the quality of what I learn and what is shared. The fact that the medical researchers can interact with patients in an intimate setting and participate in the roundtable discussions is very inspiring.
    Going to HOPE Summit has been a springboard for many other volunteer and advocacy opportunities. At my first conference, I learned about the LifeLine peer-to-peer support program. As a long-term survivor, I wanted to use my story to try to inspire hope in others who were living with lung cancer, so I jumped at the chance to give back as a mentor.
    Through HOPE Summit, I also got to know Andrea Ferris, LUNGevity’s President, and Katie Brown, LUNGevity’s Vice President of Support & Survivorship. Katie recommended me as a reviewer for the Department of Defense research grant program and I love being part of that. LUNGevity also connected me with Eli Lilly & Co. who produced an Emmy-winning documentary about my family and me. I've attended a congressional luncheon on Capitol Hill with LUNGevity, and a lab tour at Lilly.
    I was looking for ways to give back in my local community, so a few years ago I started a support group in Fort Myers, Florida. The group provides wonderful camaraderie and community. We meet once a month to share stories and experiences and resources, and we also get together socially once a month. We’re a close-knit group.
    In 2017, I convinced four members of my lung cancer support group to attend National HOPE Summit with me. We were so inspired that we decided to organize a Breathe Deep event in Fort Myers to raise awareness about the facts of lung cancer. We were able to share our story in local media and even surpassed our fundraising goal. We held the 5K walk and fun run on November 4 to kick off Lung Cancer Awareness Month.
    Breathe Deep Fort Myers brings attention to lung cancer and the lack of funding and gives us the opportunity to get rid of the stigma. We want to let the people in our area know that you don’t have to smoke to get lung cancer, that two out of three of the people diagnosed are never-smokers or quit many years ago.
    Being an event coordinator gives me such a feeling of purpose. I’ve been so aimless since I retired from teaching because of my health. Helping others through this event and through the support group is very rewarding. Our number one goal is to provide much needed research funding. We also want to raise money for patient education and support, and help continue to bring top-notch speakers to HOPE Summits. I hope that both the walk and the support group continue to grow and make an impact in the community.
    LUNGevity is so patient-oriented and offers so much support and information and education that it aligns with my goals. I want to give back to LUNGevity because I feel like they’ve given a lot to all of us. That makes me want to do as much as I can to help support LUNGevity’s mission to improve quality of life and survivorship.
     

    Melissa (bottom right) with members of the Fort Myers Lung Cancer Support Group and their families at the 2017 National HOPE Summit.
  23. LaurenH

    Jim Pitts

    By LaurenH,

    In 2013 started with pneumonia but wasn't getting over it, Dr. wouldn't give up something just not right he kept saying. Sent me to a pulmonary specialist who found a spot on my right lung. Immediately set up oncologist, surgeon & hospital within 7 days I was laying in the recovery room with minus -one lung. Come through with flying colors, home within 3 days, thought to myself piece of cake! Yeah wrong answer, started chemo 3 weeks later and within 24 hrs I was back in hospital dehydrated & sicker than a dog! Not going to sugarcoat it the next 4 months was hell! After that I refused radiation, oncologist wasn't happy, I didn't care. As of October 20 it has been 5 years & I was stage III B so don't believe the statistics, just never give up! and fight!
  24. LaurenH

    Lauren Humphries' Story

    By LaurenH,

    Nothing can prepare a man and his family for a lung cancer diagnosis. I remember the night five years ago when my mom called me with bad news. My uncle, Keith, had just been diagnosed with Stage IV lung cancer.
    Keith is my dad’s youngest brother, who is always making everyone laugh and giving the best bear hugs. He is a husband, father, and small business owner who coached all of his kids’ youth sports teams and never missed a game. My grandfather passed away from paranasal sinus cancer when Keith was seven, so he grew up without really knowing his dad. Because of that experience, Keith is determined to never leave an empty seat at an important family event.
    The night we found out that our beloved uncle had lung cancer, my sister and I cried together and hugged each other for a long time. We started asking questions like, “How did this happen?” and “Why him?” and “What does this mean?” Then we realized there was only one question we could actually attempt to answer: “What do we do about it?”
    My mom was at our local farmer’s market when by chance, she met Cindy, the founder of Breathe Deep Baltimore, one of LUNGevity’s grassroots events. Cindy started the Breathe Deep Baltimore walk in 2008 in loving memory of her mom. The event was taking place in Oriole Park at Camden Yards. Monica Barlow, the Orioles’ former PR Director who had the same ALK-positive lung cancer as my uncle, was the keynote speaker. We had to be there.
    Our first Breathe Deep walk as a family was hopeful and somber as we celebrated survivors and honored those we’ve lost to this terrible disease. Monica spoke about the groundbreaking research that LUNGevity was funding and how important it is to be strong advocates. That was the first time that my uncle met other lung cancer survivors. Until that day, he didn’t have anyone to talk to who understood what he was going through.
    Breathe Deep Baltimore felt like my family was part of an important movement, and that we were accomplishing something together that was much bigger than what any one of us could have done alone. I had just finished grad school and all of my work and volunteer experience was in marketing and event management, including positions with Susan G. Komen and American Cancer Society. I decided to join the Breathe Deep Baltimore committee and help plan future events. I had no idea then that this group of wonderful people would become like family to me.
    This September marked my uncle’s fifth year as a survivor, a milestone we celebrated as a family. His first year of treatment included chemotherapy, radiation, and surgeries. He took Xalkori, a targeted therapy drug, for three and a half years and recently switched to Alectinib, both with very positive results. This September also marked my fifth year on the Breathe Deep Baltimore committee and my second year as a LUNGevity employee.
    Working for LUNGevity, first as a volunteer and now as a full-time staff member, is incredibly rewarding. As the Digital Community Manager, I interact all day on social media and our online communities with patients, survivors, caregivers, and advocates. I am incredibly thankful for the people who are working to create a world where people with lung cancer live longer and better because of early detection and more effective treatments. I am grateful for the opportunity to know and work with these people and to help support others whose lives have been affected by lung cancer. By working together, I am determined and optimistic that we can stop lung cancer. There are always an infinite number of reasons to be hopeful.
     

  25. LaurenH

    Diane Milley

    By LaurenH,

    My story begins in May of 2013. I am a high school special education teacher and for weeks I had a nagging but dry cough, I wasn't worried about it at all as I was running 3 miles a day, just completed a 5k road race and was very rarely sick. I finally saw my primary care physician who put me on a Z-pack and I went back to my normal life. A few weeks later since the cough had not gone away, I went back to my doctor who gave me a prescription chest x-ray, which I immediately threw on the passenger side of my car and forgot about it. Fast forward 2 weeks later, on a whim I was passing by the x-ray facility and decided to run in and get and a chest x-ray. The next day my doctor called and said he saw something on my lungs that he didn't like and was pretty sure it was cancer. A few days later a bronchoscope was done, and as I was waking up from it I heard a doctor use the word malignant and I knew he was talking about me! Never have I been so scared, I actually made them show me the name of the person on the results, thinking this is a mistake. Non-smoker, 58 year old healthy individual, never gave a thought to lung cancer. It is now 2019 and I have seen targeted therapy, chemo therapy, have had 2 surgeries. I have been on immunotherapy for 2 1/2 years, which has kept me stable. I think maybe the key to success is exercising religiously and making the body stronger for each day that follows. With exercise comes a strong mental attitude… two winning combinations!
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