Search the Community
Showing results for tags 'lung cancer'.
-
Find A Cure Panel specializes in patient research for rare and serious disease and they have some current research for people and caregivers of people with Small Cell Lung Cancer (SCLC). To qualify for this research, you or your loved one with Small Cell Lung Cancer (SCLC): 1) Must have a diagnosis with Small Cell Lung Cancer (SCLC). 2) Be over 50 years old. 3) Have EXTENSIVE SCLC. Sometimes referred to as stage 3, stage 4 or metastatic SCLC. 4) Must have some experience with smoking. If you/your loved one NEVER SMOKED then you won’t qualify, unfortunately. 5) If you are a caregiver, you must be knowledgeable about your loved one’s condition and treatment. 6) If you are a caregiver who recently lost your loved one with SCLC, you can still participate if you lost your loved one in the last 12 months. It is easy to participate in. It’s one confidential and anonymous phone call with one moderator talking about your experience with Small Cell Lung Cancer (SCLC). If you are interested in participating, please contact FACP at info@findacurepanel.com and reference FACP/SCLC
-
Around the first of December 2015 I noticed I was having some shortness of breath when I climbed the flight of stairs to my apartment. I didn't think much of it at the time. I just chalked it up to my age (62) and being out of shape. As time went on the shortness of breath became worse and I developed a persistent cough with some transient hoarseness. I decided it was time to see the doctor. My primary care provider diagnosed me with asthma/bronchitis, which I had many times over the years in the past. He put me on an antibiotic and an inhaler which usually worked. As the days went by and I did not get any better, I went back to see him. He switched the antibiotic and prescribed a cough syrup. I still wasn’t getting relief, so I went back a couple more times. The doctor seemed to be getting frustrated with me, and I knew I needed to see a specialist. I scheduled an appointment with a pulmonologist. A chest x-ray showed a large pleural effusion. I underwent a thoracentesis, which revealed malignant cells in the fluid. A CT also showed several masses in my right lung. I was sent to a thoracic surgeon who performed a pluerodisis and biopsy. The biopsy revealed stage 4 metastatic non-small cell lung cancer (NSCLC) that tested positive for the ALK mutation. After learning about the advancements in the treatment of NSCLC, especially in the ALK mutation, I chose to have treatment. My oncologist recommended an oral targeted therapy drug Xalkori (crizotinib). He explained that the drug was not a "cure" but was very effective in shrinking or slowing tumor growth, which it did with very few side effects. Shortly after being diagnosed and before beginning treatment with Xalkori I started researching everything I could find about lung cancer just trying to get a better understanding of my disease and find support from others who were dealing with lung cancer, it was during this research that I came upon the LUNGevity website. The name was the first thing that attracted me, I thought it was a neat play on the word longevity but as I began reading I soon realized there was a wealth of information and support there and that the organizaton was very actively involved with funding for research which really appealed to me because I feel it is through research that a cure will one day be found. I liked what I learned and decided to become a Social Media Ambassador so that I could help spread the word about lung cancer and clear up some misconceptions about the disease. I attended a Hope summit put on by Lungevity in Washington DC where I was even more impressed with the organization and the wonderful people involved with it. The LUNGevity website, Inspire, and the Alkies Worldwide Facebook group have been valuable resources of information and support for me. I am also a member of a cancer support group at my church. The biggest challenge to me is always living with this disease in the back of my mind. Every scan or blood test reminds me that there is a potential killer living in my body and I don't know what it is up to until I get my results. It is as much a mental disease as it is a physical one. To me, a survivor is a person who has overcome something bad and lived to tell about it. If I could give any advice or words of wisdom to a newly diagnosed patient, I would first tell them that lung cancer is no longer the automatic death sentence that it was in the past. I would tell them to demand gene mutation testing so they know what kinds of treatment options are available. I would also tell them that lung cancer treatment is a waiting game. It’s helpful to distract yourself with life and not to focus solely on this disease. Don't give lung cancer that much power over you! I hope that my efforts as a volunteer will help raise awareness and funds for lung cancer research. I want to make people aware that it only takes lungs to get lung cancer. Sam and her husband Bob in Jackson Hole, Wyoming, shortly after her diagnosis.
-
- 1
-
-
- lung cancer
- survivor
- (and 4 more)
-
New health care legislation was recently introduced in the United States Senate, and if passed, it would roll back major provisions of the Affordable Care Act. The Graham-Cassidy Bill could have important and negative implications for lung cancer patients, survivors, and their families, including higher costs and reduced access to health care coverage for the sick and low-income. Below are several areas of our concern: The bill prohibits pre-existing condition provisions; however, it allows states to permit waivers to health plans allowing them to charge different, increased, premiums based on a variety of factors. This could make health insurance unaffordable for lung cancer patients and their families. States would be able to waive the minimum essential health benefits that health insurance companies are required to provide currently, this includes prescription drug coverage, and could affect lifetime and annual limits on these benefits. Medicaid expansion and reduced funding for the Medicaid population would be affected under this legislation, which would likely result in less affordable health care for lower-income Americans. Experts say there is a chance this legislation could pass, and we need your HELP. Please TAKE ACTION by contacting your Senator TODAY and ask them to vote NO. Call (844) 257-6227 to directly connect to your Senator’s office.
-
This organization is looking for people who are willing to share their opinions about Non-Small Cell Lung Cancer. They are looking to speak with patients (ages 18-80) and caregivers with Stage III or IV Non-Small Cell Lung Cancer. Qualified participants will be compensated $100 (Telephone Interview) OR $150 (Focus Group) for their time and opinion. Anyone who is interested can email Patient.Research@schlesingerassociates.com to see if they are a good fit for the interviews! Please see the attached flyer for complete information. Non Small Cell Lung Cancer _ Flyer.pdf
-
September 14 is the National Day of Action for Medical Research! The purpose of the Rally for Medical Research and the National Day of Action is to call on our nation's policymakers from all 50 states to make funding for National Institutes of Health (NIH) a national priority and raise awareness about the importance of continued investment in medical research that leads to MORE PROGRESS, MORE HOPE and MORE LIVES SAVED. Aside from supporting lifesaving research, NIH funding sustains a vibrant and innovative 21st century U.S. economy and supports jobs. Thanks to the $2 billion increase to the NIH budget that Congress approved for FY 2016, the U.S. saw an additional economic gain from investing in the NIH of $4 billion compared to 2015. In 2016, NIH funding and jobs generated by that funding produced $64.799 billion in new economic activity compared to $60.717 billion in 2015. Nineteen states saw an economic gain of $1 billion or more. Click here for more information and to register.
-
I am really struggling with my eosinophil white blood cells going up every two weeks and are now at 3.2 (absolute). That's awfully high to be ragweed! My oncologist put me on a treatment break. BMS said there was no"data in clinical trials" about eosinophils. Can anyone help?
-
LUNGevity Foundation's Career Development Awards (CDA) for lung cancer research fund critical lung cancer research projects and offer the recipients world-class mentorship by LUNGevity’s prestigious Scientific Advisory Board. “LUNGevity created the CDAs to identify outstanding scientists early in their careers and encourage their continued development in the field of lung cancer research to grow a strong pipeline of dedicated lung cancer researchers,” says Charles Rudin, MD, PhD, Professor and Chief, Thoracic Oncology Service, at Memorial Sloan Kettering Cancer Center and chair of LUNGevity’s Scientific Advisory Board. “We work closely with these researchers with the hope of seeing them become the next generation of scientific superstars.” LUNGevity is proud to support the following researchers its 2017 Career Development Awards: Mehmet Altan, MD, The University of Texas MD Anderson Cancer Center, Identification of predictive markers of toxicity to immunotherapy. Dr. Altan will work to develop a way to predict which patients are most likely to develop serious side effects from some types of immunotherapy – these side effects can limit use of the treatments. Once patients can be flagged as high-risk for tissue damage, measures can be taken to limit the tissue damage proactively; patients may then experience better outcomes with their immunotherapy. Valsamo Anagnostou, MD, PhD, Johns Hopkins University, Dynamics of neoantigen landscape during immunotherapy in lung cancer. Dr. Anagnostou will leverage an existing clinical trial to discover why some patients become resistant to immunotherapy and to get a handle on how to help them overcome the resistance. Zofia Piotrowska, MD, Massachusetts General Hospital, Overcoming heterogeneity and resistance in EGFR-mutant NSCLC. Dr. Piotrowska intends to uncover the reason a subset of lung cancer patients develop resistance to their best option for treatment: a third-generation EGFR-blocking tyrosine kinase inhibitor drug. In addition, she will study a new combination of drugs in a clinical trial that may help patients who develop this type of drug resistance. “We have seen a lot of great progress in treating lung cancer, and we still need to better understand how lung cancer develops resistance to drugs, and why some patients experience side effects from treatment,” notes Upal Basu Roy, PhD, MPH, director of LUNGevity’s translational science research program. “Our funding this year’s group of awardees will help make progress in facing these challenges and continue to improve outcomes for lung cancer patients.” Each of these prestigious three-year awards is for $100,000 per year, renewable in the second and third years based on research progress. Awardees serve as non-voting members of LUNGevity’s distinguished Scientific Advisory Board for the terms of their awards. Awardees are mentored by senior lung cancer experts at their own institutions as well as by experts from the Scientific Advisory Board. Under the guidance of LUNGevity’s Scientific Advisory Board, a group of 21 prominent scientists and researchers, LUNGevity ensures that grants are awarded to the researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as extending and improving lives for lung cancer survivors. LUNGevity is the only lung cancer organization with a programmatic focus on early detection and a robust Career Development Award Program. Our researchers are working on finding a better way to detect lung cancer, and to better diagnose, treat, and prevent its recurrence. The foundation’s overall research program, including CDA awards, is a crucial factor in moving the science forward to improve outcomes for people living with lung cancer. LUNGevity’s Scientific Research Program is supported by the American Lung Association, Bristol-Myers Squibb, Genentech, The Thomas G. Labrecque Foundation, Upstage Lung Cancer, and individual donors. Read the full press release.
-
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
-
Hi, I was diagnosed with State IV lung cancer that spread to liver and lymph nods....I started chemo and got thru almost 2 cyles of abraxane/carboplatin and my count hit bottom so I've missed the last 2 weeks of chemo and my last cycle for this treatment....I've tried everything, they say eat healthy, but its not working or working very slowly. I go back on Monday to see if the t counts are good... I also since this started lost so much weight, I can't get past 89.5 lbs.....so try to eat healthy and gain weight....what a joke.....In the meantime, I've missed 2 weeks of treatment....It scares me.... Any fattening suggestions
-
The research team at Tulane University is conducting an online survey of individuals with cancer histories. We are particularly interested in individuals with a history of lung cancer. The survey takes about 10 minutes and asks about people's beliefs about their health and healthcare, emotions and behaviors, and health history. We hope that the study will build knowledge that can help individuals with cancer to be more satisfied with their care. Here is a link to the survey http://tulanestudy.com his study has been approved by LUNGevity Foundation.
-
FDA Grants Genentech’s Alecensa Priority Review for Initial Treatment of People with ALK-Positive Lung Cancer South San Francisco, CA -- August 2, 2017 -- Genentech, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY), announced today that the U.S. Food and Drug Administration (FDA) has accepted the company’s supplemental New Drug Application (sNDA) and granted Priority Review for Alecensa® (alectinib) as an initial (first-line) treatment for people with anaplastic lymphoma kinase (ALK)-positive, locally advanced or metastatic non-small cell lung cancer (NSCLC) as detected by an FDA-approved test. The FDA will make a decision on approval by November 30, 2017. “Phase III results showed Alecensa reduced the risk of disease worsening by more than half compared to the current standard of care and lowered the risk of tumors spreading to or growing in the brain by more than 80 percent,” said Sandra Horning, M.D., chief medical officer and head of Global Product Development. “We are working closely with the FDA to bring this medicine as an initial treatment for people with ALK-positive NSCLC as soon as possible.” This sNDA submission for Alecensa is based on results from the Phase III ALEX and Phase III J-ALEX studies. A Priority Review designation is granted to proposed medicines that, if approved, the FDA has determined to have the potential to provide a significant improvement in the safety or effectiveness of the treatment, prevention or diagnosis of a serious disease. Alecensa received Breakthrough Therapy Designation from the FDA in September 2016 for the treatment of adults with advanced ALK-positive NSCLC who have not received prior treatment with an ALK inhibitor. Breakthrough Therapy Designation is designed to expedite the development and review of medicines intended to treat serious or life-threatening diseases and to help ensure people have access to them through FDA approval as soon as possible. Breakthrough Therapy Designation was granted on the basis of the Phase III J-ALEX trial. Alecensa was granted accelerated approval by the FDA in December 2015 for the treatment of people with ALK-positive metastatic NSCLC who have progressed on or are intolerant to crizotinib. The ALEX study is part of the company’s commitment in the U.S. to convert the current accelerated approval of Alecensa in people with ALK-positive, metastatic NSCLC who have progressed on or are intolerant to crizotinib to a full approval as an initial treatment. Read the full press release here.
-
- 1
-
-
- lung cancer
- fda
- (and 4 more)
-
Today we celebrate 13 years of surviving NSCLC. I'm borrowing three toes from Martha, my wife and caregiver extraordinaire, who deserves most of the credit for my continued life. Martha did the heavy lifting during treatment, asking the right questions at the right time, and prodding my medical team with just the right touch. By comparison, I was at wit's end during my nearly 4 years of continuous treatment. Doctors McK (GP), H (Oncologist) and C (Thoracic Surgeon) also deserve a lion's share of credit. Collectively, they share a trait that distinguishes them from the rest of medical community -- they treat people, not patients. The red toenail painting tradition was started by a Dr. Phillip Berman, radiologist and never smoker, who was diagnosed with Stage IV NSCLC. In an early Internet cancer website he founded, RedToeNail.org, he vowed to paint a toenail red for each year he survived what he called "this nastiness." He painted 5 before passing but taught me a great deal about living with lung cancer. During treatment, he was playing with his children, exercising, interacting with friends, and finding something to enjoy every day. In other words, he embraced the life he had and lived every day reveling in the joy he discovered. His lesson -- those who choose treatment choose life and the important thing is to do something with the life you have. I pass his powerfully evocative message to you. If you suffer with lung cancer then resolve to live every day and find something to enjoy. Realize that if I can live, so can you. Paint your toenails red! Stay the course. Tom
- 1 comment
-
- 4
-
-
- living with lung cancer
- tom galli
- (and 7 more)
-
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.
-
The other day, in conversation with a newly minted medical school graduate, he told me low-dose computed tomography (LDCT) was dangerous. Dangerous! If LDCT is dangerous, what is late discovery of lung cancer? He nearly fainted when I told him I had perhaps more than 40 CT scans in my treatment history, telling me I was a candidate for radiation induced cancer. It didn’t seem to register that I was a candidate for extinction by lung cancer. We are told the only effective way of treating our disease is early discovery. Few dispute this point. Why then would the Center for Medicare & Medicaid Services (CMS) want to reduce reimbursement for low-dose computed tomography (LDCT) screening by more than 40 percent? The Society of Thoracic Surgeons is concerned calling LDCT a “game changer in the battle against lung cancer.” Then I read: “Family physicians lack sufficient knowledge about recommendations for LDCT." Moreover, Doctors Patz and Chen, professors of radiology at Duke, say: “Not screening patients annually could save millions in health care costs and spare patients the radiation exposure and downstream effects of false positive screenings.” Something is very wrong. We have an effective tool for early discovery of life-threatening disease when not discovered early, and there is a campaign mounted against using it. CMS is a federal government-funded agency. In government programs there is a big difference between savings (cash you can put in the bank) and avoidance (cash spent elsewhere). CMS money is appropriated in broad categories. Once appropriated, fiscal managers move money around to address other needs or requirements. Appropriated federal funds are almost never returned to the Treasury. So the reduced funding for LDCT will be a bill payer for some other CMS program. No money is saved; it is spent on something else. Further, when making a valid cost avoidance argument, one must identify all cost. For example, the professors of radiology predicting savings for reduced screening do not identify the millions of dollars of increased cost for treating late-stage-diagnosed lung cancer. A cost avoided almost always results in cost added somewhere else, and without disclosing added burden, professionals are making very unprofessional arguments. Lastly, and most importantly, no one advocating reducing LDCT is considering the most important impact—suffering. There is a vast amount with late-stage diagnosis. Suffering affects more than the lung cancer survivor; it devastates families. While real and detrimental, suffering defies quantification in dollars. Several hundreds-of-thousands of us in the United States will suffer a late-stage lung cancer diagnosis this year. LDCT can eliminate some of this. In this light, it is hard to understand the assault against using LDCT to find, fix, and finish lung cancer! Stay the course.
- 1 comment
-
- 2
-
-
- lung cancer
- early detection
- (and 18 more)
-
Join Cancer Legal Resource Center tomorrow at 12:00 PM PT for the second webinar in our 2017 series. In this webinar, we will give an overview of the laws that provide protection in the workplace for those who are coping with a cancer diagnosis, including the Americans with Disabilities Act, state fair employment laws, the Family and Medical Leave Act, and other resources. Click here for more information, and to register online. This post was approved by LUNGevity.
-
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.
-
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.
-
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!
- 1 comment
-
- 3
-
-
- lung cancer
- survivor
- (and 7 more)
-
We have several possible media opportunities for individuals who are using the Lung Cancer Navigator App to help manage their/their loved one's lung cancer diagnosis. If you are interested in sharing your story and helping to raise awareness for this resource, please respond to this thread and we will be in touch with more information. If you would like to learn more about the Lung Cancer Navigator App and how to download it for free from the Apple or Google Play stores, please visit LUNGevity's website. Thank you! Lauren -- Digital Community Manager LUNGevity Foundation
-
Thriving With Cancer A year ago, I was the healthiest 60-something year-old person I knew. Worked out every day; ate well; kept my weight down. My blood work-ups from my annual physicals were suitable for framing. Then, the bomb hit. In October 2016, I was diagnosed with Stage IV Lung Cancer. I had thoracic surgery, and due to the recovery from that plus the pain from the disease itself, I was on a hefty dose of opiate medications. For the rest of that year, I was pretty much a pain-ridden, groggy-headed vegetable. Lung Cancer Death Sentence? But, fortunately for me, that is not the end of my story, just the beginning. For anyone who knows about this disease, my diagnosis used to be a death sentence, and frankly still is for many, many people. I, however, had the good fortune to have tested positive for a genetic mutation that could be treated with an oral medication called Tarceva; more effective than chemo and with fewer and less severe side effects. I started on this medication on November 1, 2016. Before updating you on my status, let me digress just a bit. My Unwanted Intimacy with Lung Cancer It is my great un-fortune to have considerable history with lung cancer. I held my mother’s hand 8 years ago when she took her last breath after her bout with this disease. More recently, just 3 years ago, I held my little sister’s hand when she too succumbed to this miserable malady. And so, now it’s my turn. I am now 5 months into my treatment, and pretty much back into my normal life. At the same point in time for them, my mother was dead, and my sister was desperately trying a variety of chemotherapy cocktails, to no avail. So, what is different today? The Foundations for a New Approach to Treatment The difference today can be traced back to Richard Nixon (off all people), who declared a war on cancer way back in 1971 and funded significant research efforts to fight this war. I never thought I’d be thanking Nixon for anything, but he has my gratitude. The difference is also due to Craig Venter and Francis Collins, who sequenced the human genome in the early 2000s. And, the difference is due to thousands of researchers since then who’ve utilized the foundational research that resulted from these efforts and designed whole new approaches to treatment for cancer. When my mother was diagnosed 8 years ago, she had one option for treatment: chemo. When my sister was diagnosed 4 years ago, she had two options: chemo, or targeted therapy for a couple of gene mutation. When I was diagnosed, lung cancer treatment was already in the midst of a revolution. Chemotherapy, the go-to approach for all advanced lung cancer not that long ago, is the choice only half of the time today. The other half of lung cancer cases are being treated by either targeted treatment (like my own), or immunotherapy, both of which are far, far superior. So, I am the beneficiary of research. Pure and simple. The team of people who are caring for me at Lurie are fabulous, but it is the research that led to targeted treatments that is the key to my life. Where to Next? With a need and desire to do something with my gratitude, I spent time with Dr. Platanias, who heads up The Lurie Comprehensive Cancer Center, and he told me about OncoSET. This, my friends, is research that will lead to the next revolution in cancer treatment: PERSONALIZATION. If you haven’t already read the summary of this effort on this page, please do. Treatment of many diseases, cancer included, will become one-to-one. Each of us treated for exactly our unique profile. I believe it, but more importantly, so do those who truly know what they are talking about. I’m in the process of sending over a hefty donation of money to jump-start the lung cancer part of this program, and am participating in the research with my own data. I will update you on what I learn about myself through this process. Thriving with Cancer? Really?! When I started this note, I told you that a year ago, I was the healthiest person I knew. A year later, I am the healthiest person I know, who happens to have cancer. It’s not SURVIVING, it’s THRIVING. And, I have research to thank. I can think of no better place to invest your support, so please join me in giving to this worthy effort. Our children and their children with thank us, even if we’re not Nixon or Venter.
- 1 reply
-
- 5
-
-
- lung cancer
- research
- (and 2 more)
-
A market research company has asked us to share a survey opportunity for patients within the US with Stage IV lung cancer. Those who qualify and complete the 60-minute telephone survey will be compensated if you complete the screener and telephone interview. To see if you qualify for this survey, click here www.alphadetail.com/lcpatientstudy Please note: you will only be compensated for completing this in its entirety once. If you need any additional information please contact Elizabeth Lawson (ELawson@us.imshealth.com)
-
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.
-
We all know that when someone receives a lung cancer diagnosis, it can be overwhelming. LUNGevity designed the Lung Cancer Navigator app is to empower patients and make understanding and living with lung cancer less daunting and considerably more manageable. The Lung Cancer Navigator mobile app puts your entire support network in the palm of your hand. It helps you understand your diagnosis and provides tools and forums for asking questions, detailing symptoms, and managing medications. The app is a great way to communicate with your healthcare providers and to request support from friends and family. Follow these easy steps to get started! WATCH the introductory video for a quick demonstration of how the Lung Cancer Navigator works. DOWNLOAD the free LUNGevity Lung Cancer Navigator from Google Play or the Apple App Store. VIEW these step-by-step instructions to set up your app. TELL US what you think! We’re eager to know what you find most beneficial and how we can make the Lung Cancer Navigator even more helpful in the future.
-
Time is supposed to heal our wounds, that’s what people say; but when you lose your best friend you realize that no amount of time will heal that void that is left. My mother was diagnosed with non small cell lung carcinoma three months after I turned eighteen, only weeks after what would turn out to be our last family portrait. The day the test results came back the only words I heard during the meeting were “cancer” which meant someday I’d be burying her. I don’t recall anything else; but she heard something very different she heard “cancer” and thought how do I fight this and win. She had an amazing oncology team that outfitted her with an aggressive and varied game plan and a thing called a port; but the most important thing they both shared was an optimistic attitude. When they gave her the port in her chest where she would get her chemotherapy , she was not upset that she had to get a port or that she was having chemicals placed in her body and hoping they would work; nope she was upset she was not the first person to get the port , she was number two. When they decided on radiation she got her long beautiful brown hair cut off into a short cute style and donated it for other people to get a wig; after all hers would grow back when she was in remission. She had an amazing belief that God would not have given her this to battle if she were not capable. She believed it was given to her because she was supposed to teach someone, somewhere, something and it may not be during her battle or during her remission it may be long after her death ; but if one person was saved or one person learned something than the fight was worth it. We took the time we were given and made amazing memories going to see our favorite places like Red Rocks or the buffalo herd, we also made memories and new traditions when we spent time in the hospital. If we were there during football season we ordered pizza and had it delivered to her room and then invited her nurses to come have a snack and catch up on the score. We enjoyed watching animated movies and we even got her a Gameboy to play the mind teaser games while she sat for hours getting chemo. In January, we received word our dad had suddenly passed, my parents had divorced when I was two. Her concern while she was in a hospital bed was not herself, but was us , her kids. Several months later we got a phone call that her father had unexpectedly passed away. She was a daddy’s girl and was unable to travel to his funeral so we filmed it for her. When we were in another state, our “sister from another mister”, her friend from work who was like a daughter to her, stayed with her while we buried our dad. It was on this trip we almost lost her, her blood pressure was so low they said they didn’t know how she was awake and talking. She persevered. As she grew weaker we made final plans, it was an enormously painful task asking her to decide where she wanted to be buried, what songs she wanted played and writing her will and her making the decision to not be resuscitated. Her wish was to die at home and we wanted to give her that. She had sacrificed her life for us, given us everything we could have ever wanted. She fought incredibly hard, she was my superman and I was watching her die and there was nothing I could do about it. She said that her goal was just to make it to January, so that her kids didn’t lose both their parents in the same year, but she would not make it. I remember begging God to either heal her or take her but I was not fair to make her stay just for us. It was not fair to make her suffer when she gave us such a wonderful life, after all we had each other to lean on. She deserved to be at peace. Fifteen days after her fifty-fifth birthday we made the calls to have everyone say their goodbyes. She was aware of where she was so we brought photographs and blankets and loved on her, the nurses said she knew we were there but she couldn’t respond or open her eyes or anything. I gave her a kiss and told her it was okay to go, that she didn’t have to stay here in pain for us, she deserved to be happy and at peace with the family in heaven. I stayed with her and she passed on October 18, 2007. This year marks ten years since she has been gone, she has missed so much. I enlisted in the military, my brother is dating a wonderful woman, my sister got married and her and her wife have an adorable son. I got married and have a now five year old step son, bought a house and will complete my college degree this year. She gave us life and taught us about everything from friendship to how to do laundry but most importantly she taught us to never give up because even cancer can be beaten. It was not a physical victory, but victory for the soul. No matter what happened through her illness she never let it define her as a person. She was able to complete one last thing on her bucket list when she earned her wings: she was able to be an organ donor and donate her eyes to someone who needed them. Even in her death she was able to put someone else before herself ! Please if you are fighting this illness know that there is hope, it may not end up being a physical victory but if you keep your sense of humor and your love of life than cancer can never truly be victorious. God bless you on your trip down the yellow-brick road! In loving memory: Patricia Fay Hartlep (October 3, 1952- October 18, 2007) Thank you to all those who care for those fighting! Bless those who love those struggling and rejoice for those who have earned their wings!
-
- 1
-
-
- lung cancer
- caregiver
- (and 2 more)
-
Hi everyone, I found this site and hope that someone out there may help me. I have just been diagnosed, and won't know more until I see a specialist next Wednesday. I found out approximately a week ago that I have a golf ball size mass in my right lung; I understand a biopsy needs to be done to grade the tumor etc etc. What is worrying me, and really driving me crazy (as if the diagnosis isn't enough), I just don't seem to want to stop smoking!!!!!!!!!!!! Why is this? I understand that I have been using cigarettes for many many years as a supposed tool to help me with stress (also PTSD sufferer, with depression and anxiety), but surely being told this you would think it would be the first thing you change. Yes it's a high stress time, but this is my life. And my constantly beating myself up over it is just making it worse. Did anyone else have problems with stopping? I suppose I'm hoping that it's not that unusual, that it can be difficult, that I'm not alone. I am, I think, really scared, and I say "I think" because I just don't know. So many emotions, so many questions as I'm sure you all understand. Either way, I am glad I have found this site, by all accounts support is everything. Thank you
