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The LUNGevity Support and Survivorship Program Supporting Lung Cancer Awareness Month Written by: David Morales November is both Lung Cancer awareness and National Family Caregivers Awareness month. In helping the fight, family and friends often take on the caregiver role to offer support. College News advocates the awareness for the cause this November. Katie Brown, the VP of the LUNGevity Support and Survivorship Program, joins College News with special guest Anita Logsdon, a nurse in oncology hematology care (OHC), to discuss the challenges of caregivers for people fighting lung cancer. College News: How common is lung cancer? Katie Brown: Lung cancer is very common. It affects one in 15 people. In the United States, it is the leading cause of death among men and women. There are more than 224,000 new cases diagnosed every year. CN: What is the role of a caregiver for a person diagnosed with lung cancer? KB: Caregivers are unsung heroes that take on many different roles and responsibilities. They may offer emotional, practical or physical support for a loved one or they may help at doctor appointments, during treatments and with household responsibilities. It really varies for each individual. CN: What types of support and resources are available to help caregivers navigate in their role? KB: Well, at LUNGevity we have a lot of lung cancer patients and caregivers. We have a comprehensive website that is scientifically and medically vetted. You can visit lungevity.org. There is also navigatelungcancer.org. That is a great new resource for caregivers. It was developed by Bristol Myers Squibb in partnership with lung cancer patient advocacy groups just like ours. It’s a comprehensive source of education and information for people living with lung cancer, their caregivers, loved ones and also Oncology nurses like Anita! CN: Hello Anita! What role can a caregiver play to help a patient navigate their medical care? Anita Logsdon: The caregiver can do some research before the initial visit so they can have knowledge of the appropriate questions to ask the doctor, such as: what type of lung cancer, what is the stage of the cancer and what type of treatment options are available? Especially, what the side effects of chemotherapy, immunotherapy or surgery are, or if there are any available clinical trials. Clinicaltrials.gov is a website that has information on clinical trials across the country. Clinical trials are an option now for treatment! There are many new therapies that have come out in the past few years for lung cancer. CN: What are some helpful tips to give caregivers when they visit a doctor? AL: Where I work, we have a multidisciplinary team. The patients and their family will meet first with the physician. After that initial consult, they will meet with an advanced practice provider, a nurse navigator and a financial navigator. This meeting helps to identify the needs the patient and their support team may have early on in their journey. CN: Katie, are the results of this new survey transparent throughout your organization? Katie Brown: I believe so! It’s clear that caregivers want more information. They want education and support. We find that, adequately supported, their better able to care for their loved ones. It improves the quality of life for the lung cancer patient and the caregiver. - See more at: http://www.collegenews.com/article/the-lungevity-support-and-survivorship-program-supporting-lung-cancer-aware#sthash.yrKQfHb1.dpuf This interview was originally published on collegenews.com on November 29, 2016. Link: http://www.collegenews.com/article/the-lungevity-support-and-survivorship-program-supporting-lung-cancer-aware -
Hi my name is Terry Gillespie. I am a 13-year lung cancer survivor. I started my lung-cancer journey back in October 2003. In the fall, I am prone to sinus infections, so as usual I got one. It just so happened this time that I let it go a little longer because I had just lost my job and had no insurance. When it got so bad and I coughed so hard that I had a little blood in my sputum, I called the doctor and made an appointment. My doctor prescribed the usual antibiotics, and when I mentioned that this sinus infection was worse than normal, and that I must have hurt my throat coughing because I saw a little amount of blood. She said that she was concerned that I may have pneumonia or TB, so decided to run tests. That was when my world turned upside down. At that time, there was very little information about lung cancer treatments and very grim survival rates. I had very little support. After my biopsy, it was confirmed that it was cancer. I told the doctors that I did not want to know what they thought my end date would be. I was going to die at the ripe old age of 80, in my sleep. So on we went with the treatment with no mention of a termination date. I had my left lung removed, and then I had radiation and chemotherapy. I was bald and beautiful. I also had some pretty bad side effects. During surgery, my surgeon accidentally hit my right vocal chord and I was without a voice for two years. Let me tell you, I can now hit my target directly when I throw things to get attention! I have permanent sciatica on my left side. I am one of the lucky lung cancer survivors and I have not had a recurrence. People tell me that I look great for having lung cancer. It makes me wonder . . . What do people think that cancer survivors look like? The reality is that many lung cancer patients are not so lucky. I chose to be an advocate for lung cancer awareness as soon as I physically and mentally was able. I decided that I can help make a difference. My motto was “Nobody Deserves to Die from Lung Cancer.” I still believe that today. We have to do whatever we can to raise awareness, to educate people that this is NOT only a smoker’s disease, and to raise money for research to help eliminate lung cancer. (Terry, right, pictured with fellow survivor and friend Tommieanne Bolden, at National HOPE Summit)
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I first got involved with LUNGevity in early 2013. My husband had been recently diagnosed with lung cancer and I was looking to participate in a walk to raise the much needed funds for research. I chose to work with LUNGevity because I saw that they had many walk/runs throughout the country. Prior to my husband's diagnosis I didn't know much about lung cancer and like most people believed it was unlikely to ever touch my life as we both have never smoked. After his diagnosis I learned that it's the deadliest of all cancers yet the least funded. And LUNGevity is one of the very few that focuses on lung cancer specifically. I contacted LUNGevity asking if they had a walk in my area - Albany, NY. I first spoke with Diana Aldecoa, the Vice President of Breathe Deep Events, and she indicated that the closest was Syracuse and asked if I was interested in starting one. I organized the first Breathe Deep Albany that year. I believe Breathe Deep Albany has been growing steadily in terms of participation and money raised over the last four years. It's been a welcome and much needed event in our community to support those bravely dealing with this disease. It's been a way for survivors to support each other and spread the word about lung cancer. It's a place for those who have lost someone to remember them and raise money in their memory to help those living with the disease and hopefully to find a cure so others don't have to go through what their loved one had to endure. I know Breathe Deep Albany is very much appreciated and supported by NYOH (New York Oncology Hematology). My husband's oncologist has been a lung cancer specialist for many years in this area and has said that this event has been needed in the community. I'm proud that we've built this event up year by year. The first year we raised $15,000, second year $22,000, third year $25,000 and this past year nearly $43,000. That's over $100,000 raised in our little community. I'm always very proud on event day when everything comes together. The program we hold before the walk is inspiring. We hear from brave survivors who are willing to tell their stories and the remarkable doctors in the area telling us all the new developments on the horizon. I hope our fundraising efforts raise enough money to find a cure or at least the next line of defense in terms of meds. I'd also like to see a test developed to detect lung cancer earlier for everyone so that it becomes routine like mammograms.
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On August 17, LUNGevity hosted a webinar with Dr. Julie Brahmer to discuss recent clinical trials in immunotherapy drugs. These trials have stimulated a lot of discussion in the lung cancer community. The webinar was moderated by LUNGevity's Vice President of Support & Surivivorship, Katie Brown. Dr. Julie Brahmer is an immunotherapy expert at Johns Hopkins and a member of LUNGevity Scientific Advisory Board. Dr. Brahmer is an expert in the use of immunotherapies to treat lung cancer. She has spearheaded numerous clinical trials for the immunotherapy of lung cancer, including the pioneering trial that led to the approval of nivolumab in the second-line setting for advanced-stage lung cancer. Dr. Brahmer is the director of the Thoracic Oncology Program at the Johns Hopkins Kimmel Cancer Center. She is also a member of LUNGevity’s Scientific Advisory Board. To listen to the webinar and to read the follow-up blog written by LUNGevity's Director of Science Communications, Dr. Upal Basu Roy, please click here.
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Immunotherapy Virtual Roundtable Update and Discussion Join us for a webinar on Aug 17, 2016 at 7:00 PM EDT. Register now! https://attendee.gotowebinar.com/register/1131249407449233668 Virtual Roundtable Update and Discussion on Immunotherapy: An interactive discussion about the potential of lung cancer immunotherapy, and the significance of recent clinical trial results with lung cancer expert, Dr. Julie Brahmer, MD. This is a free live interactive webinar hosted by LUNGevity Foundation. Registration is required. After registering, you will receive a confirmation email containing information about joining the webinar. View System Requirements
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I am going to be setting up a booth to bring awareness and raise funds for Lung Cancer at local fairs and festivals. My booth will provide information, bandies and a donation bucket. I have acquired a small list of venues to set up my booth but would like to hear from everyone on any ideas they may have on any other settings to get our message out. I live in Mobile, AL. Thank you for any suggestions.
