Lung Cancer Alliance understands what a patient needs. They go above and beyond to help all of us suffering from this exhausting disease.
I was diagnosed in February 2018 with Non small cell lung cancer. It was devastating to me and my family. We went through the typical stages that most go through after learning of the disease that had taken over my whole body without me even knowing. How can this happen? Hiw can something so evil invade your body without you ever knowing?
Lung Cancer Alliance as well as my family and many many friends made a difference. They filled my heart with hope and gave me strength to fight.
The diagnosis of NSLC was real. I'm "one if the lucky ones" they kept saying. I have a mutation that has targeted medicines available to combat this invasion. I have EGFR exon 19. Lol go ahead and google it. That's how I learned about it. I did my research....chose the medicine and course of treatment that I felt was best for me. After all I had 3 months to live if left untreated. What did I have to lose? My Oncologust gave me my treatment options. 4 medicines that may help stop the progression of this ugly invasion. I chose Gilotrif or better known as Afatinib. To me it was the logical solution. It was a very harsh and strong medicine. It works a little different than the other TKIs (google it) that I had the choice of. It has severe side effects like most and is my life saver.
After the diagnosis and then a battle with pneumonia then to top it off several pulombany ambulisms, which landed me in the hospital, it was a obvious decision for me! I must fight! For those who know me.. yes I'm very competitive.. it drives me. Most if that is the need to be a better me. Now I really know this sounds crazy lol but being competitive was the emotion that drove me to will this cancer out of my body.
My little blue pill is a miracle medicine for me but... it was more than the little blue pill. It was family, friends, a community! A TEAM! I always told all of the soccer teams I managed over the last 19 years that it takes a team to run a team. Well.. it's TRUE. The prayers and uplifting moments got me through some pretty rough patches. "Stay positive" I kept saying to myself. Keep eating, keep moving! I have much to live for!
Back to my stats.. diagnosed in February..started Afatinib on April 3rd and on May 24th my pet scan showed NED. Ok I'll give this one to you..you don't need to Google it ;-) No Evidence of Disease. Is that just the craziest news. I made my oncologist repeat it 3 times! 50 days on Afatinib and a life changing regimen, it was going away. How did that happen?
I'ts a daily struggle combatting the side effects and wondering if IT'S back in between the countless blood tests I do weekly and scans every 8 weeks or more often if needed. Every little change in my body scares me. Is it the cancer or is it just me getting old? Is it pain from the cancerthat penetrated my bones? It really takes a toll on your body! Scanxiety is a thing :-(
I'm off of blood thinners ×which was a twice a day I injection to keep the blood clots from coming back. 8m no longer on pain meds like morphine and oxy. They are amazing drugs when you need them but I'm happy to be free of them. I go to the gym several times a week now. I take walks without being tethered to oxygen now. I can out on makeup and go out in public without worrying about everyone looking at that horrific rash that the meds cause. I am adjusting to my new normal but never taking anything for granted. Life is short. Live it!
We all have story's that needs to be heard. Spread the word with hope and change! Technology and advances are our best friends. But we need help and funding to bring awareness. We need to find out why we are getting this terrible invasion.
Spread the word! If you have lungs, you can get lung cancer. Stop the stigma. Don't leave us out! We need just as much help and support as those with other types if cancer!
Thank you LCA!
I found the Lung Cancer Alliance quite by accident right after my father was diagnosed with stage 4 Lung Cancer back in 2013. Through the LCA, I learned more about the disease that would eventually take my fathers life. In addition to getting educated, I have actively participated with the Lung Cancer Alliance family of events, from the Philly half marathon to the Lung Cancer Run/Walk at the Zoo. And since losing my father, Aunt and best friend to this awful painful cancer, I have expanded my involvement to other lung cancer foundations events, however, there is something very special about the close knit community of the Lung Cancer Alliance, and that is where my heart belongs. It was the very first foundation that remains the most passionate and motivated group I have had the lovely experience of working with.
If I could give 6 stars I would.
Lung Cancer Alliance is staffed by a very dedicated, caring and compassionate staff.
They have introduced me to numerous Lung Cancer Survivors through their annual conference in Washington DC.
They also have a great online catalog of resources for both patients and advocates.
They are tremendous at getting survivors as well as advocates in front of their elected officials on an annual basis to raise awareness as well as funding for Lung Cancer research.
My wife and I have worked with LCA for 3 years now.
I am a Lung Cancer survivor, and I have found their staff and professionalism second to none.
Their annual Lung Cancer Summits are a must. Especially if you or someone you know has been impacted by lung cancer.
They were great with a family member whose name was called by cancer. Quite a supportive group. Donated several times to them, highly recommend.
Fantastic organization with great resources and support. I love volunteering for Lung Cancer Alliance in memory of my mom.
Great organization to volunteer for and donate to! I lost my mom to lung cancer in 2015, just 4 weeks from diagnosis. I wanted to turn my grief into something positive, so I attended the organization's advocacy day on Capitol Hill in 2016. I can't wait to attend again in just a few weeks. Lung cancer patients and their families deserve a fighting chance upon diagnosis, not a death sentence.
Lung Cancer Alliance is at the top of my list of nonprofit organizations. I have benefited from their support and guidance for over 3 years. When my husband was diagnosed with lung cancer, we contacted Lung Cancer Alliance. The support that we have received from their organization has been incredible. We have come to know some of their staff. Everyone that we have met has been very helpful and gone above and beyond to help us with any issues that we have had. My husband and I were lucky to have attended the last 3 Advocacy Summits in Washington, D.C. What a truly remarkable experience that was! I cannot say enough good things about the Lung Cancer Alliance staff and the wonderful work that this organization does!
I have volunteered for this amazing organization. Up on all the issues and does wonderful work to help all lung cancer patients stay updated on legislation and medical research.
As a lung cancer patient and advocate trying to create awareness of the need to increase funding for lung cancer research, Lung Cancer Alliance has been extremely supportive and professional. They helped me prepare to tell my story, scheduled meetings with congressional members and their staff and provided the latest information from top oncologists and scientists. With their support I have met with members of Congress at Capital Hill at two National Summit’s. With Lung Cancer Alliances help I am a 4 year lung cancer survivor.
Lung Cancer Alliance is the leader in advocating for patients and providers in ensuring best practices from prevention and early detection to treatment and survivorship. They were the first nonprofit exclusively dedicated to lung cancer. The passion, perseverance, inclusiveness, and grit of every LCA team member, past and present, continues to transcend lung cancer from a stigmatized, deadly disease to a curable and treatable disease that affects everyone with lungs regardless of age, gender, socioeconomic status and lifestyle.
Thank you LCA for everything you do for nurses, patients and the community. Never stop fighting!
Lung Cancer Alliance was the first voice exclusively dedicated to lung cancer for patients AND providers. They collaboratively provide a voice of unity, compassion, inclusiveness, and encouragement in a disease unfairly stigmatized. They never leave anyone alone in the fight against lung cancer, whether they are a newly diagnosed patient or a provider fighting to improve medical care in the prevention, early detection and treatment of lung cancer.
As a lung cancer screening nurse navigator, Lung Cancer Alliance provided support throughout the difficult journey in the development of responsible screening programs and insurance reimbursement. The successes that I have had in screening would not have been possible without the support that I have received from the entire LCA team. If you are a provider whom wants to start up a program, you will be successful if you connect with LCA.
Thank you, Lung Cancer Alliance, for everything you have done for all of us (patients, non-medical caregivers, nurses, physicians, researchers, community grassroots organizers) in restoring hope in the fight to end lung cancer. No one can fight lung cancer alone. By uniting providers, patients, families, and nurses, LCA provide us with the strength and support to continue to fight through our most difficult challenges.
I have been working with lung cancer alliance for 8 years after my mom passed away from lung cancer. They have been supportive in every way and it’s been a pleasure working with them.
I have worked with Lung Cancer alliance for 8 years. When my mother passed away from lung cancer we didn’t have any local resources to help. We reached out to them for help. They help us get Shine A Light on Lung Cancer vigil each November for Lung cancer awareness month. We have been holding it at the Salem Cancer Institute every year since. When wanting to do more, LCA helped us set up Lung Love Walk/Run Portland. We have held 3 runs so far to raise money and starting to prepare for next year. Without their help we wouldn’t had known where to start and never would have raised money for Lung cancer research for loved ones living with Lung cancer. They helped me through the grieving process of losing my mother. I’m a proud supporting of LCA and encourage anyone who has dealt with Lung cancer get involved.
I've been hosting an annual charity fundraiser for the past eight years with three friends. We've always been very passionate about our event, but it didn't really start to thrive until we found a nonprofit that was a perfect fit for what we were trying to accomplish. Just before our fourth year of the fundraiser, my family was hit by Lung Cancer. In my search for ways to help, I came across the Lung Cancer Alliance (LCA), and I immediately felt connected to their mission. We found a great partnership right away with LCA, and we haven't looked back since!
Our average funds raised per year have tripled since joining forces with LCA, capped by us breaking the $10,000 mark for the first time in our most-recent year. I think the goals and messages that LCA provides really seem to resonate with our donors . We've also grown more passionate in our efforts ever since we found a more personal connection with our charity. Working with LCA, we've really felt like we are making a difference and have a voice. Their representatives are always reaching out to us to show appreciation for what we're doing and remind us that we are a valuable part of their organization. This is something that we never felt with any of our previous nonprofits, and it's created a great experience for us all-around. We've been receiving fundraiser materials, wrist-bands, shirts, sunglasses, pins, thank-you letters, and continuous signs of appreciation through the years, and it's made our work feel more rewarding each time we do it! It's been a great boost for us, and I'd certainly recommend LCA to anyone else who is looking to have a voice in the fight against lung cancer!
I love working with Lung Cancer Alliance! All of the staff make me feel like family! They do an excellent job supporting lung cancer survivors and caregivers.
I've had the opportunity to work with the staff at the Lung Cancer Alliance since 2013 after losing my wife to this horrific disease in 2012. They are amazing in what they do everyday. Always working with patients in mind first and foremost, pushing to further awareness, helping to push for better research funding, taking the cause right to the lawmakers and helping me to help them advocate when necessary. Their events, like the walk in Philadelphia at the zoo are first class all the way and have brought many people in the community into the fold by hosting events like these. If you have lung cancer or know someone who does, this is the place you need to go. I wish we knew about them when my wife was diagnosed, it would have made a world of difference. Your contributions to this organization go right towards making a difference in the lung cancer community. They take their mission seriously and I know they will help increase the survival rate over time and work to find better treatments and cures. Trust me on this. After all we went through with doctors, hospitals and insurance companies fighting us in this battle, I wouldn't volunteer with an organization that was like the others. They fight WITH us. They fight FOR us. Kudos LCA and keep up the great work -- Scott
I learned of Lung Cancer Alliance in 2010 after my husband quickly died of lung cancer. The organization has never disappointed me. I have become involved in the Lung Love Run Walk Philadelphia for the past 5 years in addition to many other events. The organization is represented by a group of phenomenol individuals who continuously demonstrate their strong commitment. Lung Cancer Alliance has changed my life for the better at a time when I very much needed the support they provide. And over the past 7 years I have seen LCA positively impact the lives of those with a lung cancer diagnosis. LCA is undoubtedly a great nonprofit.
My introduction to LCA came through my mentor, Hilary. She was (is!) guiding me in starting a lung cancer screening program in my hospital. From the beginning, Hilary told me the success of her program wouldn't have happened without the support of LCA.
The more time I put into developing my program the more I have come to appreciate the varied resources of LCA. Every time I go to the website to find one thing, I find two more!
There are free resources for patients, both paper and online. So nice not to have to reinvent the wheel.
The annual conference was an amazing opportunity to learn and to network. I look forward to attending next year with even more questions.
When my mom died in 2008, part of my brothers and I grieving process were to give back someway in honor of her, who was gone too soon. We were not ready, we felt helpless, and we had no outside help to process what this thing that was taking our mother from us so early in her young seventies. So we founded Cinderella Cares Inc. named after her and we went looking for organizations that were on the cutting edge of changing the terrain, Lung Cancer Alliance is local and making a big impact. Therefore, we joined force with them. The LCA family has a big heart and a big vision and because of their integrity, passion, smarts, advocacy work, support to those at risk and navigating a lung cancer diagnosis, commitment to policy change, and increase funding to research we had to join with them. When we do our annual comedy for cure LCA is one of the recipients of the money we collect.
Thanks LCA - Cinderella Cares love all that you do unselfishly.
Over 6 years ago I lost my wife, a never ever smoker, to adenocarcinoma at the much too young age of 63. Lung cancer took from her all but her first year of retirement after 30 years in the federal government. Each year I normally donate to organizations that I feel are worthy, need what I can offer, are committed to the cause they serve, and for whom I think my contribution makes a difference. The Lung Cancer Alliance is truly one of those. According to Charity Navigator, their administrative and fundraising expenses are quite low, leaving more dollars for the programs and services that are its mission. They are making a difference in the fight against lung cancer, and I intend to support them to the extent of my ability. Pink may be the color of cancer ribbons in October, but in November it is time to think clear, the ribbon color that signifies the invisible nature of lung cancer!
LCA has been a pleasure to work with from the beginning. Their motivational skills and true dedication to the cause is an inspiration. Look forward to volunteering in years to come!
Lung Cancer Alliance is an excellent organization that offers the most up to date information on lung cancer, current resources for patients and their families, and one may search for clinical trials. They are a true advocate in the political arena for those who are living the lung cancer diagnosis and for those who help screen and treat patients.
I was a Lung Health Navigator hired to start a lung program early 2017. I reached out to LCA last year for assistance. Angela Criswell, came to our organization and presented to the Oncology Collaborative team and was very instrumental in promoting Lung Cancer Screening and the importance behind their organization. With her help, we were able to start our program and have screened more than 400 patients in one year and identified 3 Stage I lung cancers exceeding the national average 1/320. Not to mention, they offer a lung screening conference for a way to learn and network with other organizations across the country. I attend 2/3 and could not have been as successful as we are today without the organizations support.