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Found 36 results

  1. Jan Poulsen's Story

    It came as quite a surprise when I was first diagnosed with Stage 3 lung cancer in 2007. It was an even bigger shock to learn that my lung cancer was caused by exposure to high levels of radon gas in my own home. I want to keep sharing my story with the hope that it might prevent others from getting lung cancer from radon gas. My husband and I did extensive renovations on our house to turn it into our dream home. About five years later, I developed a nagging cough. I went to the doctor, who sent me for a CT scan. The scan showed a mass in my right lung, so we scheduled an appointment with a pulmonologist to have a biopsy. The doctor who performed the biopsy called to tell me that I had lung cancer and that it was inoperable. He told me that I had four months to live. My husband had just returned from a trip to Africa and my mother was staying with us while she recovered from surgery. I turned on the T.V. and Jordin Sparks was singing, “This is My Now” and it just hit me that “you can sit here and feel sorry for yourself or you can fight it.” It’s crazy how the universe works. Shortly after I was diagnosed, we had our home tested for radon gas, the second leading cause of lung cancer. The test showed levels that were 6-times the EPA recommended action level. I had my right lung removed and underwent 5 weeks of radiation and 4 months of chemotherapy. I started to gain my strength back and started looking for a lung cancer community. In the beginning, there was very little information about lung cancer. I couldn’t find anyone to talk to. Then my daughter found out about LUNGevity and a walk they were holding in Manhatten Beach, California, called Breathe Deep Los Angeles. She said we should go there on a girls’ trip. Who wouldn't want to go to the beach after dealing with lung cancer treatment? My first Breathe Deep experience was so inspirational. There were over 350 people walking whose lives had somehow been touched by lung cancer. I’d never been to anything like that and there was nothing like that where I lived near Salt Lake City. When we got home, my other daughter said, “Why don’t we start one here?” So we held our first Breathe Deep Salt Lake City in 2012. I remained cancer free for 6 years, then in 2014 they found a fist-sized tumor in the front of my brain and a smaller tumor in the back which was metastasized lung cancer. They were able to remove those tumors and I went back into remission until that December, when they found 6 more brain tumors. I underwent surgeries to remove those, and then in January 2015, I started on a new chemo pill that I take orally. This treatment has worked very well for me and now there are four more on the market that would work just as well or better if this one stopped working. This is why I am so passionate to raise funds for lung cancer research. I am living proof that it works. The new treatments are so effective and amazing, but researchers need funding to find a cure. Lung Cancer research receives the least amount of federal funding of all types of cancer, yet it is the deadliest. I feel it is so important to raise funds to improve outcomes for lung cancer patients. I think the most rewarding thing about being a Breathe Deep event coordinator is to see people coming back year after year because they know it’s a good cause. It makes you realize how many people care about health and our lungs. The more people you talk to, the more you find that they have a connection to lung cancer, whether it’s a family member or friend. In addition to raising funds and awareness, we try to provide information at our event. We have speakers who talk about new discoveries in lung cancer treatment and radon. In fact, just because we’ve been raising awareness, a lot of the real estate agents are on board with getting homes they sell tested for radon gas. A local organization that does radon testing is even donating $20 of every radon test they do to LUNGevity. They’re promoting the walk to all of the real estate agencies that they work with. It’s amazing how generous people are. At first, I thought I can’t go around asking for free stuff. But I’ve found that people are willing to help! I really feel like the grassroots is the way to reach people. I’ve had more success talking to people one-on-one. We’ve done some women’s groups and I’ve spoken at classes on Radon. I also worked with a social worker to put together a lung cancer support group. The online groups are great, but sometimes, you just really need to talk so somebody in person. In addition to LUNGevity, I’ve also been doing a lot with the Utah Radon coalition. And I’m going to be speaking at the international radon convention in New Orleans in October. I want to show that there’s a face to lung cancer caused by radon gas. If it can happen to me, it can happen to anyone. Preventing lung cancer is so much easier and less costly than treating lung cancer.
  2. Reality vs Fears

    I am a two year survivor of a stage 4 gentic autoimmune liver disease. Although I am stable and in "good" health. I suffer from abdominal and muscular pain- rhumatoid arthritis and side effects from diabetes and Hashimotos thyroid disease. It's a lot- but it's manageable and I'm living very well with chronic disease. Before I was diagnosed- I was a high energy non-stop person. I didn't stop working until I had finished every last "to-do" on my list. I didn't have unfinished projects in my home and I always cleaned up after everyone else. I rarely slept! Now, I still do that, but I'm a little slower. My body hurts during and afterwards.I also have a different kind of urgency that I didn't realize I had until my husband called me out the other day. Husband: "Go lay down! You have to stop lifting and moving and you need to just rest." Me: "I can't rest. I have so much to do." Husband: "You'll get it done later." Then my fear hit me smack in the face: What if I'm not here later? Who is going to do it? Now listen, I plan to be around for many years. The reality is, I am here now, but the fear of death and my family losing me, however deeply hidden, is real. How do you deal with your reality and fears?
  3. Allison Doan's Story

    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.
  4. Paige Black

    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.
  5. surviveSTRONG and uniteSTRONG Community Conference Saturday, May 20th | YMCA of the Inland Northwest surviveSTRONG and uniteSTRONG is a community conference for cancer survivors and their support persons. More than a dozen workshops, classes and presentations offered to strengthen and nurture participants in spirit, mind and body. Classes will provide knowledge on exercise, nutrition, stress management, self expression and support for caregivers. Click here for more information, including the conference schedule and how to register. Livestrong Confrence Poster 8.5x11-3.pdf
  6. Rose Vining's Story

    I was diagnosed with lung cancer in August of 2011 out of the blue, totally unexpected. I went for a regular checkup after experiencing some gastric reflux and abdominal pain. The doctor suggested an abdominal CT scan. He called me back into his office and told me that, although the scan was of my abdomen, a part of my lung had been included. A little shadow had shown up there that concerned him. He asked me to undergo a second CT scan, this time of my lungs. That scan revealed a prominent area of masslike consolidation in my left lower lobe. The next day I saw my pulmonologist, who scheduled me for a needle biopsy. At the time, he didn’t think that the scan findings really indicated a lung cancer. I was not concerned either, as I had never smoked and had little history of cancer in my family. I was traveling home from a visit with some friends when I got the call from the hospital. The emotional voice on the other end was cracking. I didn’t even realize that it was my pulmonologist. He said, “We got the results from your biopsy. You have a very large tumor taking up most of the left lower lobe of your lung. We have to get this right away. We’ll get through this honey.” It was surreal. I thought it was a mistake. I was diagnosed with non-small cell adenocarcinoma. They scheduled surgery right away to remove a lobe of my left lung. That was followed by chemotherapy. It was a very tough time. After I recovered from that surgery and the chemo, I just wanted to go back to my life. I’d been very happy with my life. I was a volunteer chaplain. I didn’t know any other survivors and I didn’t want to think about lung cancer anymore. They said I only had 15% chance of the cancer coming back so I wasn’t going to worry about it. A year later, the cancer came back. Looking at the scan, I felt like I was in a nightmare. The second surgery to remove the rest of my left lung was easier, because I knew what to expect. But after that surgery and treatment, I knew I needed to get plugged in and started searching online for an organization that could help. I liked that LUNGevity Foundation was constantly posting helpful information and seemed focused on survivors. Before I was diagnosed with cancer, I had enjoyed the experience of mentoring, so I applied to be a LifeLine support partner. Nikole from LUNGevity reached out and invited me to attend the HOPE Summit survivorship conference. One of my friends went with me and we had such a wonderful time. HOPE Summit changed my life. Before that time, I had been pretty isolated as a survivor. When I walked in and saw that many survivors, I was amazed and overwhelmed. Hearing others share their experiences changed my whole attitude. The main thing I came away with after HOPE Summit is “be your own advocate.” My amazing friends that I met through LUNGevity connected me with my current doctors at UT Southwest. Any time that you need support from LUNGevity, it is available. I am a LifeLine mentor to other survivors, but I also have LifeLine mentors who have helped me through two recurrences of cancer. They’ve really inspired me and kept me looking forward. Mentoring is a two-way relationship. If they’re feeling down, I can help them and if I’m feeling down, they can help me. It is so rewarding. I’m also a LUNGevity Social Media Ambassador. I’m a big believer in the power of connection. If we isolate ourselves, we focus more on the negatives and everything that’s wrong. But if you’re out there connecting with other survivors, you’re sharing the ups and the downs, you’re not alone. It really helps. The advice I like to share with other people who have lung cancer is if you don’t like what one doctor says, it’s very important to be your own advocate. It’s your life!
  7. Ruthe Cain

    In 1998, Ruthe Cain was living life in California and enjoying being close to the fresh air and the great outdoors. She was in her late fifties and loved living an active lifestyle, but that year she would face a diagnosis that would change her life: she learned that she had lung cancer. More than 15 years and three surgeries later, Ruthe is still a survivor, and she’s still enjoying life in every way she can. Ruthe first suspected something might be wrong with her health when she had trouble with her vision. “All of the sudden, it looked like a black veil over my eyes,” she says. She went in to see her doctor, and after a series of tests, she was surprised to hear that the problem might be not with her eyes, but her respiratory system. “I didn’t think a thing about my lungs. So they sent me in for a chest x-ray, and that was the beginning of it.” Ruthe was diagnosed with non-small cell lung cancer, and soon after, she underwent an operation to remove one of the three lobes in her right lung. “After that first lobe was removed, I had no side effects at all. I was totally fine,” she says, and she continued to live an active life, snow skiing, and water skiing and getting outside throughout the year. She also kept up with regular lung exams in order to check for a possible recurrence. It wasn’t until a decade later, in 2008, that a new problem was discovered. On a trip from Maine to Pennsylvania to visit her son and daughter-in-law, Ruthe felt a pain in her chest. “We went to the hospital, and they did a chest x-ray, and sure enough they found another node,” she says. With this second diagnosis of lung cancer, surgeons removed another lobe of her lung, and they also noticed some suspicious findings that indicated changes might be happening in the remaining third lobe. A year later, when a growth was detected, they removed the last part of her right lung, leaving only her left lung intact. “I was really lucky,” says Ruthe. “I have never had [to use] oxygen, I’ve never had any radiation or chemo. But this last surgery, it was definitely a life changer.” With her whole right lung now gone, Ruthe had to cope with more serious side effects, such as an increased danger from chest infections and a noticeable amount of fatigue. It also meant some of the outdoor activities she had always enjoyed were simply no longer possible. However, she has found lots of ways to stay positive – and stay moving. “We got a dog a few years ago, so I am able to take her on the trail at the dog park,” says Ruthe. She also loves spending time in the pool with her two grandsons and recently enrolled in a water aerobics class that she attends with her husband.
  8. Cancer advocate to address largest lung cancer survivor conference FOR IMMEDIATE RELEASE Media Contact: Linda Wenger lwenger@LUNGevity.org (973) 449-3214 Country music star and cancer survivor Wade Hayes WASHINGTON, DC (February 16, 2017) – LUNGevity Foundation is excited to announce that country music star Wade Hayes will be sharing his cancer journey with lung cancer survivors and their caregivers at the 7th Annual National HOPE Summit on April 29 in Washington, DC. As opening keynote speaker, he will relate his experiences before the largest convening of lung cancer survivors in the country. The annual LUNGevity National HOPE Summit is the largest lung cancer survivorship conference where attendees come from across the country and around the world to learn about living well with lung cancer. The three-day event features inspirational speakers, medical expert forums, lung cancer survivor-specific sessions, advocacy sessions and opportunities for lung cancer survivors at all points in their treatment to connect with each other. Hayes will kick off the two-day conference and set the tone of hope for all in attendance. Hayes was diagnosed with stage IV colon cancer in the fall of 2011. After extensive surgery and debilitating chemotherapy, Hayes battled his way back to health only to have the cancer return in the fall of 2012. The country singer fought back and channeled his experience into his latest album, “Go Live Your Life.” Today, Hayes is cancer free, a dedicated advocate for people living with cancer, and an active supporter of the Colon Cancer Alliance and other cancer nonprofits. He has spoken and performed at numerous events across the country to raise funds to fight cancer and inspire others. “We couldn’t be more thrilled to have Wade Hayes join us for this one-of-a-kind celebration of lung cancer survivorship,” said Katie Brown, VP Support and Survivorship. “His commitment to advocating on behalf of others with cancer makes Wade an inspiration for all of us.” The National HOPE Summit is a 2½ day conference in Washington, DC, that is open to lung cancer patients, survivors, and caregivers. Learn more about this unique event and register atwww.LUNGevity.org/hopesummit. Read the full press release here.
  9. Alisa Brenes' Story

    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.
  10. Early on, we learn Algebraic equations with only one solution. Then we encounter equations with two solutions ⎯ Quadratic Equations. Consider: x2 + 3x – 4 = 0. This has two solutions: x = -4 or x = 1. Both are correct; one is negative and one is positive. Algebra students get very comfortable with solutions having a positive and negative outcome ⎯ lung cancer survivors are less comfortable! The positive outcome for lung cancer is extended life. But like quadratic equations, there can be negative outcomes that are less desirable. Mine is chronic pain. So to the question, how does one fit a negative outcome into the positive? No, Algebra does not help. But, for those in treatment or surviving after treatment, preparing for life with negative outcomes is helpful. My chronic pain has two primary and many secondary causes. I have peripheral neuropathy ⎯ numbness in fingers and toes including a burning sensation in toes and pain in the foot joints. It is a common Taxol side effect, and we informally call it “taxol toes.” Also, I have nerve damage caused by quite a few surgeries to my right chest that is chronically painful. How do I fit these negative outcomes into life? My strategy is to tolerate chronic pain until bedtime. Then something must be done or I won’t sleep. I’ve cycled through over-the-counter, then prescribed sleep medications. Both worked for a while. Doc found a study suggesting a therapeutic effect for Xanax on chronic pain. He prescribed a 0.5mg dose at bedtime, allowing an increase to a total of 1.5mg. This relaxes me and makes me drowsy. It works about 6-in-10 nights. A secondary cause sometimes drives pain above chronic levels. These are: chemotherapy induced joint pain; muscle cramps; stress, anger and excitement; sneezing and coughing; and flying on aircraft. The joint pain, an in-treatment side effect, required narcotic medication in every case to relieve. Reliance on narcotics has two downsides: an inability to think and function normally the next day and constipation. However, other secondary causes occasionally require narcotic medication to achieve relief. Because of the downside to narcotics, we’ve developed a couple of unique pain abatement procedures that may be of interest. Our first strategy is to apply prescribed lidocaine transdermal patches to incision scars and or feet in combination with Xanax. Since lidocaine dosage is limited to 2 patches, my wife cuts them into strips and fits them along my incision scars, and applies them to my feet. A pair of tight fitting socks are stretched over my feet to keep them in place. When the offending pain spike is either in my chest or feet, a full 2-patch application is used. The patches are applied in time to allow the Xanax to work and I sleep, hopefully. The next works only for feet and is a back-up strategy if lidocaine fails. My wife uses an ace bandage to wrap reusable frozen Blue Ice packs to the bottom of each foot. The cold is very uncomfortable for a couple of minutes, but in a short time my feet are numb and if I’m lucky, I sleep. Muscle cramping is a long term side effect from chemotherapy. It stems from low Magnesium blood levels. I take at least 500 mg of Magnesium supplement per day. My oncologist would rather I take 1000 mg, but I suffer digestive system revolt. I learned that almonds provide 75 mg of Magnesium per ounce so I snack in lieu of a second pill. Regardless, I still experience one to two cramping events per day. When they occur anywhere near my feet or chest, chronic pain soars. There is however, no remedy for cramps. The worst occur in the middle of the night and wake me up. Archimedes, the ancient Greek hydrologist, provided an explanation for why immersing up to my neck in a swimming pool eases incision pain. The upward buoyant force of the water offsets the gravitational pull on chest incisions thus minimizing pain. Almost every day our community pool is open, I spend hours in the water. This does not eliminate pain but reduces it noticeably. On leaving the pool, the normal level returns but it is very therapeutic. Lying in a bathroom tub, unfortunately, does not work because there is not enough water for complete submersion. A hot tub works fine, but there is no difference in pain relief from water temperature. Flying in a commercial airliner also spurs chronic incision pain. Most airlines pressurize their cabin between 6,000 and 8,000 feet pressure altitude. This lower-than-sea-level pressure expands my chest cavity increasing incision pain. All commercial flights hurt but long flights are very painful often requiring a dose of narcotic medication in flight. Not flying is the only remedy. Those having thoracic surgery have long complained of incision pain after commercial air flights and cabin pressure is the cause. Another secondary cause is extensive coughing and sneezing. Sneezing is particularly bad when it is a “surprise sneeze”. During the worst pollen events, I stay indoors and I try and avoid school age children to keep the chest colds in check, especially when school is in session. The last secondary cause I have the most control over: stress, anger and excitement. Admittedly, excitement is the easiest to control except when the Dallas Cowboys are playing my beloved Philadelphia Eagles. These two games a year are indeed stressful and since I live among cowboys, someone is going to be angry over the outcome. My wife reminds me when I complain too much that I am lucky to be alive. What’s a little pain given the alternative. She’s right. Doc reminds me to avoid scheduling things in the morning so I can sleep-in late if pain interferes. He’s right. Football season is right around the corner and it is a good thing games are scheduled in the afternoon and evening. Now if the Eagles start winning, everything will be fine! Stay the course.
  11. Christmas Reflections

    I've seen the star of Bethlehem, very early on Christmas morning. While peacekeeping in Egypt's Sinai Desert, I would run before daybreak as soldiers are prone to do. Although the desert is quite cold in December, dawn running was a habit hard to break. I ran the camp perimeter to check the defensive positions and greet soldiers enjoying the banter in three different languages. Starting in the south perimeter and running counterclockwise, the predawn western sky was dark except for the stars that were so clear, they were painted on the black night sky. Passing along the northern perimeter, the sky lightened and my expectation was the sun starting its rise. But, no, not that day. Right on the distant horizon was a cosmic anomaly, a false dawn, but a bright shining nevertheless. I was looking at the star in the east seen by the Three Wise Men as they rode in search of Jesus. I would later learn, it was not a star but a rare conjunction of the planets -- Jupiter, Saturn and Mars -- all rising in the east slightly before being washed out by the rising sun. I am awestruck by that memory. Many years later after surviving a years worth of cancer surgery and while waiting the results of my first post-surgical diagnostic scan, my entire family gathered to celebrate Christmas. Mom, dad, four brothers, daughter, and a posse of nieces who overwhelmed my one nephew comprised the gathering. Despite my manifest uncertainty, we had a joyous time. I can count on a single hand the times my family gathered. With two Galli soldiers, someone was always missing on deployment. But Christmas in 2004 was an assembly formation, and the clan was all present and accounted for. We celebrated Christmas and my life. I am awestruck by that memory. Then started the clammer lung cancer treatment. In my treatment years after the Christmas 2004 assembly, my life hovered in sadness and despair. I allowed myself to become overwhelmed by uncertainty, indeed I could think of little else. I forget there are only two things certain in the human experience: birth and death. Everything else is uncertain; outcomes are unpredictable. Treatment was working for I was granted extra life. There were many opportunities for joy but they were frittered away. I am awestruck by those memories. In common with all lung cancer survivors, having been born, I have only one certain human experience yet to deal with -- death. Its timing is uncertain with or without lung cancer. In my memories of active treatment, I chose to let life pass me by forever losing opportunities for joy. Today we celebrate a birth, a new beginning. It was announced by a star. I've seen the star. Let the joy of this birth be a new beginning for all lung cancer survivors. Let us live and find joy in the life we have and be awestruck by the memories of life well lived. Stay the course.
  12. I had never experienced anyone personally having cancer until my mom. To watch her rapid change in a year was very shocking for us all. Although, her cancer did go into remission, the damage from the chemo had done a toll on her body. I would share encouraging words to my mom during the process. "You are stronger than you know strength to be." She would smile and say "Thank you." Out of the whole family, I was the most calm throughout this experience. And I often wondered why? I know now that is was the faith that I stood on and I knew that one day she would be pain free. Her last few words to me was to keep going. I was there with my mom in her last conscious moments before the dilaudid was given and that's something I will never forget. She went right to sleep.. When my mom transitioned, I spoke at her memorial service and I encouraged everyone there to smile knowing that there's a new cheerleader on your side! I want to encourage everyone with that. Anyone who has loss a loved one...you have a new cheerleader/fan on your side. Constantly cheering you on. We cannot see them physically, but we can sure feel them energetically! Encourage someone today! http://tiny.cc/sharemylove
  13. Submitted by Jan Gibson

    My cousin Kathi, who was more like a sister to me, died of lung cancer in December 2003. She was 46 years old. At the time, I didn’t know the first thing about lung cancer. Since Kathi smoked for years, I thought that’s why she got lung cancer. I didn’t think too much more about lung cancer for the next year, although I thought about Kathi every day. Then, about a year later, I had a sharp pain in the right side of my chest, like a knife stabbing through my chest and back. I thought that I might be having a heart attack. I exercised regularly, ate fairly well, and was always concerned about heart disease because my dad had died of a heart attack at age 40 and 3 of my grandparents had died of heart disease. So I knew it ran in my family. My husband took me to the emergency room and after lots and lots of tests, it was determined that my heart was fine, but they found this tiny little mass on my left lung. I was told by my family doctor that it was very possibly lung cancer. But my pain was on the right side…. The tumor was on my left lung. This didn’t make any sense! They never did find out what that pain was. It definitely wasn’t the cancer. All I can say is that somebody was trying to tell me something. If I had not gone to the emergency room that day, my cancer would most likely not have been diagnosed until it was too late, like Kathi. After a pet scan, I was sent to University of Maryland in Baltimore to see a lung cancer specialist. They immediately did a lung biopsy which confirmed their suspicion. It was non small cell lung cancer. How could I have lung cancer? I was only 46, I didn’t smoke, I exercised 5 to 6 times a week, I had regular check ups, I ate well….how could I have lung cancer? I immediately got on the internet and began researching lung cancer. What I saw was very disturbing, to say the least. The only statistic that I could remember from that evening was that 95% of lung cancer patients do not survive more than 5 years! I was just devastated. I wouldn’t be able to see my daughters grow up, I wouldn’t be able to see my grandchildren. Now how was I going to tell my daughters? They had just watched my cousin die of lung cancer! I told my younger daughter first, she was 11 years old at the time. As I looked at her, a fierce feeling of determination came over me. I WILL fight this, and I WILL beat this! I have to. My kids need me and I need them! I explained to her that mine was a different type of lung cancer than Kathi had and that it was found very early, unlike Kathi’s. I was trying to downplay it as much as I could to prevent her from worrying. And it worked. Several months later I was sitting at my desk at home, and she saw a Lung Cancer book on my desk. She came over, picked up the book, read the title and said “Oh Mom, you didn’t even have it that bad!”. My older daughter was away at college at the time, so I called her and asked her to meet me for lunch. She was 20 years old. I explained it to her just like I did to my younger daughter. They both seemed to take it very well. I was then sent for more tests and finally some good news! The cancer had not spread to my lymph nodes. It looked to be contained in one of the two lobes of my left lung. This meant that I was a candidate for surgery, which meant the best chance of a cure! I was diagnosed at Stage 1A. So, on April 20, 2005 I had the upper left lobe of my lung removed at the University of Maryland Medical Center. I was able to have VATS surgery, Video Assisted Thoracic Surgery. The day I came home from the hospital, I tried to walk up the stairs at my house. About half way up, I stopped and couldn’t breathe. I had to sit on the step for about 5 minutes to catch my breath. It was then that I realized that life would probably never be “normal” again. But, I was on the treadmill walking two weeks after surgery and back in spinning classes 4 weeks after surgery. I was determined to get back on that spinning bike and continue like I still had two lungs! The first question people ask me when I tell them that I am a lung cancer survivor is “DID YOU SMOKE?” I think non-smokers ask because they hope I’ll say yes, so they can feel safe. But none of us is “safe”. What’s so awful about that question is that if you are a smoker, you probably feel horrible about it. Almost everyone who smokes wants to quit – the majority of the people started when they were young and got addicted. Anyone who is diagnosed with cancer will ask themselves, “Why Me” and try to figure it out. The thought that you may have brought it on yourself is devastating. Do they deserve the disease because they smoked? NO! No one deserves this horrible disease! Today LC needs to be on the radar screen for everyone, not just people who smoke. I hope in the years to come LC will get the recognition of other cancers, and a cure will be found. I tried to return to my life before cancer, but found it was impossible. My whole world had been shaken and I realized that I would never return to the life I had led before. I was a survivor and I was determined to help other people diagnosed with lung cancer. The best thing that I found on the internet while researching lung cancer, was the Lung Cancer Support Community. It was an on-line community of over 7000 members who had been affected by lung cancer. Some were survivors, some were caregivers, but they were the most caring bunch of people I have ever known, and I certainly needed that. Although I will have to get a CT scan and visit my doctor in Baltimore every year for the rest of my life, it is a small price to pay for saving my life. By far, my biggest challenge has been conquering the fear of recurrence. Some days are almost worry free, others are not. The fear is always there. But I’m proud to say that I am now 10 years cancer free! After 5 years the doctors call you “cured”. What a nice word. I may be cured, but I am still a member of the cancer community and always will be. I will continue to advocate for lung cancer research until we have a reliable early detection method and adequate funding for research so that everyone else can be as lucky as I am!
  14. What Not to Say to a Cancer Patient By: Jane E. Brody What do you think is the most commonly asked question of a person who has, or has had, cancer? If you guessed, “How are you?” you got it right. But as caring as those words may seem, they are often not helpful and may even be harmful. At a celebratory family gathering a year after my own cancer treatment, a distant relative asked me just that. I answered, “I’m fine.” She then pressed, “How are you really?” “Really” I was fine, I told her. But what if I hadn’t been? Would I have wanted to launch into a description of bad medical news at what was supposed to be a fun event? Would I have wanted even to be reminded of a bout with cancer? Although my relative undoubtedly meant well, the way her concern was expressed struck me as intrusive. A diagnosis of cancer can tie the tongues of friends and family members or prompt them to utter inappropriate, albeit well-meaning, comments. Some who don’t know what to say simply avoid the cancer patient altogether, an act that can be more painful than if they said or did the wrong thing. A new book, “Loving, Supporting, and Caring for the Cancer Patient,” by a man who has been treated for a potentially life-threatening cancer and who has counseled dozens of others dealing with this disease, got me thinking about the best ways to talk with someone facing cancer — its diagnosis, treatment and aftermath. The book’s author, Stan Goldberg, happens to be a communications specialist, a professor emeritus of communicative disorders at San Francisco State University. Dr. Goldberg learned at age 57 that he had an aggressive form of prostate cancer. He said in an interview that cancer patients too often encounter people who assume the role of cheerleader, saying things like “Don’t worry about it,” “You’ll be fine,” “We’ll battle this together,” “They’ll find a cure.” However, he observed, “Words of optimism may work in the short run, but in the long run they can induce guilt if the cancer is more virulent and defeats a person’s best effort. “I was dealing with the possibility that my life would end shortly, or if it didn’t, it would be changed dramatically. False optimism devalued what was going on in my body. People were insensitive not from a lack of compassion but from not knowing what is really helpful.” What he and those he’s counseled have found to be most helpful were not words but actions, not “Let me know what I can do to help,” which places the burden on the patient, but “I’ll be bringing dinner for your family this week. What day is best for you?” As a self-described “independent cuss” reluctant to ask anyone for help, Dr. Goldberg said his son taught him this important lesson. “He came to my house during my recovery from surgery and said ‘Stop lifting those boxes, Dad. I’ll do it for you.’” Another author of very helpful books on living with cancer is Dr. Wendy Schlessel Harpham, who has had a recurring cancer for more than two decades. She suggests that people offer specific ways they can help. For example, they may say they can shop for groceries, care for children, take the dog for a run, or accompany the patient to the doctor, and then be sure to follow through with the offer. Many people now use online sites like caringbridge.org to keep people up to date on their health and needs or organizing platforms such as mealtrain.com or lotsahelpinghands.com to ask for specific help. Dr. Harpham said she came to dread the query “How are you?” because “no matter how it was intended, being asked ‘How are you?’ rattled my heightened sense of vulnerability. I found myself consoling those who asked and then fighting the contagion of grief and fear. Even when the news was good, I didn’t have the energy to include all the people who wanted updates.” Dr. Goldberg suggests that when visiting a cancer patient, people talk less and listen more. ”Often the greatest support comes from silently witnessing what a person with cancer is experiencing,” he wrote. “Sometimes only a calm presence and compassionate listening are necessary. Silence becomes the breathing space in which people living with cancer can begin difficult conversations.” In an article in Prevention magazine, Melissa Fiorenza offered this helpful suggestion for what to say to someone you deeply care for: “Feel free to cry with me, to talk, or not to talk. I’ll take my lead from you.” When talking, Dr. Goldberg suggested, “engage more in conversations and less in question-and-answer interactions.” But if questions are asked, they should be open-ended ones like “Do you want to tell me about your cancer and what you’re going through? Maybe I can find ways to be helpful.” Among the many suggested “don’ts” are these: • Don’t make light of a patient’s physical changes by saying things like “At least you finally lost those extra pounds.” • Don’t talk about other patients with similar cancers, even if they fared well — no two cancers are alike. It’s fine, though, to ask if the patient would like to talk with someone else who’s been through it. • Don’t say the patient is lucky to have one kind of cancer rather than another, which downplays what the person is going through. There’s nothing lucky about having cancer even if it’s a “good” cancer. • Don’t say “I know how you feel” because you can’t possibly know. Better to ask, “Do you want to talk about how you feel, how having cancer is affecting you?” • Don’t offer information about unproven treatments or referrals to doctors with questionable credentials. • Don’t suggest that the person’s lifestyle is to blame for the disease, even if it may have been a contributing cause. Blame is not helpful. Many factors influence cancer risk; even for lifelong smokers, getting cancer is often just bad luck. • Don’t preach to the patient about staying positive, which can induce feelings of guilt in the patient if things don’t go well. Better to say, “I’m here for you no matter what happens,” and mean it. • Don’t ask about prognosis. If the patient volunteers that information, it’s O.K. to talk further about its implications. Otherwise, it’s better to stifle your curiosity. • Don’t burden the patient with your own feelings of distress, although it’s fine to say, “I’m so sorry this happened to you.” If you feel overwhelmed by the prospect of interacting with a person with cancer, it’s better to say, “I don’t know what to say” than to say nothing at all or to avoid the person entirely, who may then feel abandoned and think you don’t care. This story was published on nytimes.com on 11/28/16. Link: http://www.nytimes.com/2016/11/28/well/live/what-not-to-say-to-a-cancer-patient.html?smid=fb-share&_r=0
  15. Lauren Humphries' Story

    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.
  16. Predicting Doom

    I am not a statistics wizard; an engineer, I value the predictive power of statistics. Indeed, if one can precisely control variables, a statistics-based prediction of the future is remarkably accurate. The joy of predicting end strength for a new carbon-nanotube concrete mix design melts the heart of this engineer. But, concrete is a thing with but 4 variables to control. Human beings have perhaps millions of variables, thus predictions about people are vastly more complicated and inaccurate. Statistically-based predictive power has a foreboding downside. The methodology is used by the medical profession to forecast life after diagnosis with late-stage lung cancer. Unfortunately, I have first-hand experience once predicted with but 6 months of remaining life nearly 13 years ago! My doom was forecasted with high statistical confidence and for a while, I believed it. In the dwell time between treatments, I searched for methods used to generate my projection of demise. Each patient’s type, stage, age, ethnicity, race, and date of diagnosis are reported to the National Cancer Institute on diagnosis. Deaths are also reported but not the cause of death. Nothing is captured on complicating health problems like cardio-pulmonary disease, diabetes, or other life-threatening maladies. The predictive data set appeared slim and uncontrolled. My doom and resulting gloom waned while mindlessly searching web pages for statistical good news. Ammunition in the form of a powerful essay by the noted Harvard biologist Stephen Jay Gould – “The Median Isn’t The Message” – contained: “…leads us to view statistical measures of central tendency [median or mean] wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua.” This meant the statistician seeks to combine data and express it as a median or mean to predict or explain. I’d forgotten that I was one inaccurate variable in a “world of variation.” One data point used to calculate a central tendency of survival for about 1.4 million Americans diagnosed in 2004. I might be the one holding the right-shifted curve from intersection with the axis of doom. Gould survived 20-years beyond his late-stage, nearly always fatal, abdominal mesothelioma cancer diagnosis. Ironically, he passed after contracting another form of unrelated cancer. A distinguished scientist, Gould eloquently described the limits of science and statistics by suggesting that “a sanguine personality” might be the best prescription for success against cancer. There is always hope, with high confidence. Listen to his essay here. Stay the course. ____________ Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU
  17. Trish Strulson

    My Journey Belongs to Me Based on statistics, lung cancer has a five-year survival rate of 17.4%. For many, it’s a death sentence but for me, this meant nothing since I am not a statistic. I came to the realization that, everyone else’s cancer is not my cancer, because my journey belongs to me, my symptoms were different, and the recovery process seems to be a lifelong event. My journey began in September of 2013, with the stigma that somehow I brought this on myself, that it was self-inflicted, or maybe I deserved it. I was told no two cancers were alike, and this cancer would belong to me, for as long as I fought. So there was no need to do Internet searches, book readings, or viewing statistics, because this would only make me feel as though, I was given a death sentence. And those who told me that, were absolutely correct. However, I did Internet searches, book readings and viewed statistics, only to discover that over one-half of people diagnosed with lung cancer die within the first year of being diagnosed. I found out, every 2 ½ minutes, someone else is diagnosed, and every 3 minutes; someone dies of lung cancer. I didn’t even know I had cancer at this time, but the grave digging had already begun. Due to the information I had gathered over the Internet, I found my symptoms, were quite different from others. I had gone to the emergency room due to a stomach ache, which continually worsened over the next week, and I just couldn’t tolerate the pain any longer. The ER physician decided he wanted to do a CT scan of my abdominal region. An hour later, he returned with not many concerns for the pain I was experiencing, but instead with the nodules he found in my left lung. This was the only thing I heard, because I could only see his lips moving, but couldn’t hear his words. The only real memory of that day, was the machines beeping and the orange drink before the scan being nasty. He referred me to be seen by a pulmonary doctor, immediately. My pulmonary doctor wanted to do a PET scan; the nodules lit up my cancer like the 4th of July. On November 15th, immediately following the results, I was whisked away, thinking the nodules will come out, and all will be right with my world. I woke up unable to move, and my daughter standing over my bed crying; she would be the one to deliver the news; I had lung cancer and they had removed my left lower lobe. My only memory, of my actions following this news, was smiling, and turning my head away, to cry myself back to sleep. I was discharged from the hospital four days later to start my chemo therapy, and my recovery process. My doctors wanted to go after this cancer very aggressively, and prescribe me to endure chemotherapy, using 2 of the harshest medicines available, Cisplatin/Alimta. I was a very lucky woman not to experience a lot of the effects from chemotherapy that others had endured. Everything was injected through a power port, located in my chest; the taste of the medicine was like chewing on a metal can. My doctors believe my good health and attitude prior to the diagnosis, had prepared me for this journey I was going through, and it’s what got me through it. My recovery process seems to be a lifelong event, and every day, I am faced with what seems to be a new obstacle. Lyrics to a John Lennon song say it best: “One thing you can’t hide is when you’re crippled inside.” Over the course of the last two years, I have tried to stay positive. I have made jokes about myself, and this disease, because this is how I have been able to deal with this tough situation. I have cried, and screamed, going through every emotion possible, and just now; I am starting to recognize, that person who looks back at me in the mirror. My brain operates a little differently; my heart has hardened; my ears don’t hear as well; and at times; I have an overwhelming feeling of sadness, but yes, it appears every piece of my body has been affected by this damn disease. I know I will find my way, and I will survive, but for some reason, at times, I tend to be struggling really hard just to get started. The cancer not only has affected me, but it has also affected those around me. I have family members, whom I barely have a relationship with; due to the fact, I never heard from them through this whole process. Resentment is a really hard pill to swallow, but I just can’t seem to let that one go. My marriage of 22 years came to an end; we were more strangers, than we were partners. Instead of this disease bringing us together, it drove us farther apart. I even lost my job of six years, two days after I got my first clean scan. The lung cancer roller coaster sucks...everyone says to take one day at a time, but really? I don’t want to take one day at a time; that’s not how I live my life. My journey has taken me to places; I couldn’t even imagine. I will forever bear the scars, and experience some symptoms, but the recovery process will be mine, for a lifetime. As far as I can see, their cancer has been nothing like my cancer. It didn’t cost me my life, my hair, or I didn’t even lose weight. Through the entire journey, I was constantly told, “You don’t even look sick.” One of the greatest side effects I experienced was the ability me to look at my life, take charge, and make changes to it on my terms. It’s all about being in a happy productive place, so I have removed individuals from my life, and added some new ones, doing things I had never done before. I have gone back to school, something I have wanted to do for years, but never believed in me enough, to do it. I believe everything happens for a reason, and I as much as cancer sucks, it made me take a look at my life, take control, and start living again. For that, I will be forever grateful. I have been though a lot over the course of the past 2 years, but to be where I am and who I am today…..I would do it all again.
  18. Don Stranathan's Story

    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
  19. Halloween costume?

    I don't know about the rest of you, but my costume for this year is LUNG CANCER SURVIVOR! I'm planning to wear this same costume (which consists of a big smile, an appreciation for my medical team, and a great attitude) for years to come. Enjoy your day!
  20. Lung Cancer Awareness Month

    Good morning! As many of you know, November is lung cancer awareness month. It comes on the heels of pink October and the popular fight for breast cancer. Thanks to Lungevity, I have some statistics and flyers that I'm providing this month. I'm also sharing stats each day on my Facebook, Instagram and Twitter account. I might have accosted a stranger or two in the elevator or Starbucks line. My friends may go for a restraining order by the end of the month, but I firmly believe that God brought me this far to be an advocate for those who have gone before me. If you have any media or celebrity contacts, reach out to them. We need to open eyes to the fact that lung cancer is EVERYONE'S concern and needs funding and research. Thanks to all of you who have read my posts, shared your stories and helped me walk through this minefield of a cancer diagnosis. Without this forum, I don't know where I'd be today. I pray for all of us every day.
  21. Patient Preferences Survey

    Are you a lung cancer survivor? Please participate in this 5-10 minute anonymous survey, and tell us about your preferences for getting information about lung cancer. Your input is extremely important. It will help us better serve the lung cancer community. https://www.surveymonkey.com/r/R25QHD7
  22. Submitted by Bobbie

    I was diagnosed with SCLC January 2009 and as of today, 10/6/15, there is nothing in my lung except a scar from radiation. No sign of cancer. I beat the odds. I had 5 rounds of Chemo and started chest radiation after the second round. I started PCI 2 weeks after the final chest radiation. My radiologist gave me a lower dosage for the PCI and an additional 2 treatments because I also have MS and PCI causes demyelination. I am cold all the time. I used to be hot. I don't sleep well. I am scared that it will return somewhere else in my body. You may have heard the saying “I have cancer but it doesn't have me!” I say B--S---! You never get over the scare. I am a 67 year old female. There is hope! I am: a lung cancer survivor
  23. DETROIT HOPE SUMMIT A survivorship conference for anyone impacted by lung cancer Saturday, October 8, 2016 Register LOCATION Detroit Marriott at the Renaissance Center 400 Renaissance Drive, Detroit, MI 48243 Parking at the Detroit Marriott Renaissance Center will be provided at no cost only for those who are registered by September 30. FEATURED EXPERT SPEAKERS TBA ABOUT DETROIT HOPE SUMMIT LUNGevity HOPE Summits are unique national and regional survivorship conferences that educate, empower, and create a community of support for lung cancer survivors. At HOPE Summits, LUNGevity serves as a bridge between patients, their families, and the medical and support communities. While lung cancer survivors are encouraged and invited to attend, caregivers and medical professionals wanting to learn more about lung cancer survivorship are also welcome. All conference sessions will be geared toward those living with a lung cancer diagnosis. The summit is free to attend, but registration is required. SESSION TOPICS Topics may include: Targeted Therapy Personalized Medicine Immunotherapy Living with Lung Cancer Survivorship Issues Survivors' Stories Advocacy Caregiving *A complimentary one hour networking reception will be provided after the meeting. For more information, or to register online, click here.
  24. COLUMBUS HOPE SUMMIT A survivorship conference for anyone impacted by lung cancer Saturday, October 29, 2016 LOCATION The Boat House at Confluence Park 679 W. Spring Street, Columbus, OH 43215 FEATURED EXPERT SPEAKER David P. Carbone, MD, PhD The Ohio State University Barbara J. Bonner Chair in Lung Cancer Research Director, James Thoracic Center Professor of Medicine ABOUT COLUMBUS HOPE SUMMIT LUNGevity HOPE Summits are unique national and regional survivorship conferences that educate, empower, and create a community of support for lung cancer survivors. At HOPE Summits, LUNGevity serves as a bridge between patients, their families, and the medical and support communities. While lung cancer survivors are encouraged and invited to attend, caregivers and medical professionals wanting to learn more about lung cancer survivorship are also welcome. All conference sessions will be geared toward those living with a lung cancer diagnosis. The summit is free to attend, but registration is required. SESSION TOPICS Topics may include: Targeted Therapy Personalized Medicine Immunotherapy Living with Lung Cancer Survivorship Issues Survivors' Stories Advocacy Caregiving For more information, or to register online, click here.
  25. Are you a lung cancer survivor or caregiver? We invite you to join us Monday, September 12, 2016 for our first Living with Lung Cancer Support Network program. We created this program to provide a community of support, education, and hope to lung cancer survivors who reside in Northeast Florida. Group meetings are hosted the second Monday of each month at Ackerman Cancer Center and are free of cost to attendees. Caregivers are also welcome and encouraged to attend. For further information, please contact Eden Mock, MSW at 904-880-5522 eden@ackermancancer.com Living with Lung Cancer Network Flier 2.pdf