Three weeks have passed since the shelter at home order was announced for New York, where LCRF’s main office is located. Dennis Chillemi, Executive Director, tells how our lung cancer community is coming together to share information and support one another.
Join the community!
Sign up for our next #TogetherSeparately Lung Cancer Community Talk Thursday, April 16 at 11 AM EDT.
Get our latest information on lung cancer and coronavirus at LCRF.org/COVID19.
It wasn’t a hacking cough. It was more like a tickle … a need to clear my throat when talking. But what seemed so small and insignificant turned into a battle of a lifetime for me.
It was the summer
of 2016 and I was only in my mid-fifties when I went for a chest x-ray. They
found two liters of fluid in my left lung, and I was quickly diagnosed with
stage IV lung cancer.
It was so
advanced, it had spread to other areas, including my leg and hip bones.
Needless to say,
I was shocked. As a personal trainer, I was fit and healthy. I didn’t smoke and
I had no environmental factors that would increase my chances of lung cancer.
So it made sense
that testing showed the cancer was genetic and I began treatment with a first
line drug for genetic cancer. I also had two weeks of daily radiation on my
left thigh to prevent the largest bone in my body from weakening.
I wish I could
say it helped. But it didn’t…
By November, I
was a shadow of my former self. I had no appetite or energy, and I lost 25
pounds. When training my clients, I had to lie down afterward to muster up
enough energy to walk back to my car. My family feared I wouldn’t even make it
to Christmas.
It was a scary
time, especially when scans in November showed the cancer had spread further.
Honestly, I could have lost my life if it weren’t for the advances made by
research into lung cancer.
As my condition
worsened, it turned out there was a new drug, only recently approved, which
targeted my cancer’s specific gene mutation. There was a chance it could help
me. I started it on December 5, 2016. The change was so dramatic, it was like a
switch was flipped somewhere!
I kept training
my clients at the gym, and soon I felt like I could do a little bit of exercise
for myself. Shortly after that, I had enough strength to do a full workout.
From there, my appetite and weight went back up, and so did my energy levels.
Frank’s license plate
I also adopted a personal motto. Some days I felt beaten
down, but I went to bed saying: “Tomorrow, I’m going to WIN The Day.” I knew I
couldn’t just say it – I had to live it and believe it.
Today I’m
healthy. My scans don’t
light up with cancer anymore. And I embrace the platform I’ve been given. I
help fundraise through LCRF’s walks. I also take any opportunity I can to
remind people that they only need to have lungs to be able to get lung cancer.
It doesn’t just happen to smokers.
The COVID-19 pandemic has been scary for everyone, but especially those who have had lung cancer. It’s more important than ever that we WIN The Day, so I’ve joined LCRF’s Facebook group for the Lung Cancer Community to connect with others affected by this disease –patients, caregivers, families, and friends. You can find me there: lcrf.org/facebook-community.
Every day I say a
silent thank-you for the drug that gave me my life back. And the research
behind it… because if I’d developed cancer even two years earlier, that drug
wouldn’t have been available to me. I wouldn’t be here today.
So, I’m proud to
support the Lung Cancer Research Foundation because they’re saving and
extending lives by funding research for the prevention, diagnosis, treatment
and cure of lung cancer.
View a joint statement from LCRF and other lung cancer groups: lcrf.org/coronavirus.
Sign up for a virtual conversation about COVID-19 and you on Thursday, March 26 at 12 PM EDT: lcrf.org/together.
LCRF is committed to helping lung cancer patients, your families and caregivers, especially at this critical time when the lung cancer community may be among the most vulnerable. Below are some tips for keeping yourself and your loved ones healthy and safe.
What is the novel coronavirus
disease (COVID-19)?
COVID-19 is a respiratory disease
that affects your breathing and spreads from person-to-person contact. How it
affects each person varies from mild to severe illness or death. Currently,
there is no vaccine or treatment for COVID-19. The majority of individuals who
get COVID-19 experience mild illness that can be monitored at home. Individuals
who experience severe illness need to be hospitalized.
What can I do to reduce my
risk of getting or spreading COVID-19?
It is critically important to
practice what is called “social distancing.” This means you stay inside
your home as much as possible and avoid any non-essential gathering where you
will be in close contact with others. Reducing the amount of people you come
into contact with will reduce your risk of getting and spreading COVID-19 to
others. Social distancing is especially important if you are feeling symptoms.
If you must travel outside of
your home for important medical appointments, etc. please keep at least 6 feet
distance between you and others, cover your coughs or sneezes with a disposable
tissue, and avoid touching your face and others with unwashed hands.
How do I practice social
distancing while in treatment for lung cancer?
Please talk to your doctor about
if you need to change how or when you receive your current treatment(s). Your
doctor will make the decision on how to deliver your care safely and
effectively while keeping you safe from COVID-19.
I have lung cancer, do I need
to be tested for COVID-19?
Individuals at high-risk for
severe illness should get tested if they develop new symptoms beyond any
underlying medical conditions they already have. High-risk individuals include:
Older adults (age 65+)
Individuals with serious medical conditions
(i.e. lung disease, heart disease, diabetes, etc.)
Individuals with lowered immunity (i.e.
currently taking any immune suppressing drugs such as chemotherapy, etc.)
What are some of the most
common symptoms of COVID-19?
Fever of 100.4 degrees or higher
Cough
Difficulty breathing
NOTE: If you are at high-risk for severe illness and experience these common symptoms please call your doctor right away. Your doctor will decide if testing is right for you.
Should I speak with my doctor
about changing or canceling my medical appointment(s)?
If you have any questions or
concerns you should speak with your doctor. Questions to consider asking your
doctor can include:
If I get COVID-19, how will it affect me since I am a
lung cancer patient?
If I am exposed or have symptoms of COVID-19, what
should I do?
How can I safely continue my treatment while reducing
my exposure to COVID-19?
Do you recommend any other methods for staying safe
while at home?
What supplies do I need at home to keep me healthy?
Please note that the information presented here is not intended to substitute for medical advice provided by your healthcare team. We encourage you to speak with your doctor or nurse about your specific health questions or concerns.
The National Lung Cancer Roundtable (NLCRT) convened the First National Summit on Lung Cancer Stigma on February 26-27 in Atlanta. The summit’s goal was to organize and build momentum for a sustained effort to end lung cancer stigma and its adverse impact on lung cancer care and outcomes across the lung cancer care continuum. Given the evidence demonstrating the toll of stigma on lung cancer risk reduction, early detection, treatment, and survivorship, there is a clear and convincing need for a strategic plan to establish coordinated national and local efforts to confront and eliminate lung cancer stigma in every setting and in every form.
The summit drew 65 participants from 42 organizations, including Dennis Chillemi, LCRF Executive Director, and Dr. Joan H. Schiller, Board Member and Chair, Scientific Steering Committee. Those gathered included lung cancer survivors and caregivers, cancer clinicians and researchers, patient advocacy organizations, professional medical societies, government agencies, and pharmaceutical companies. “The Lung Cancer Research foundation is committed to working with the NLCRT and its members to develop and implement a national strategy to end lung cancer stigma,” said Chillemi.
Attendees shared their experiences and knowledge, as well as initial ideas for ending lung cancer stigma. The program began with a summary of the history and current status of lung cancer related stigma across the care continuum. Lung cancer survivors, caregivers, and clinicians shared personal stories and perspectives on lung cancer stigma. The first day ended with an overview of the evidence on how lung cancer stigma influences patient care and outcomes.
With lung cancer survivors and advocates integrated across all discussion groups on day two, attendees engaged in extensive dialogue on central issues that must be addressed. The summit concluded with a strong commitment by participants to work towards eliminating lung cancer stigma by banding together and generating a blueprint for reaching that goal. The NLCRT and summit participants will continue to organize efforts and will propose a comprehensive strategic plan to end lung cancer stigma at the 4th annual NLCRT meeting on December 7-8, 2020 in Washington, DC.
A DIY fundraiser brought together friends and family for a “Paint and Sip” at Pinot’s Pallette in Edgewater, NJ.
Maria Villalobos coordinated the event to honor her father, Pedro. He had loved painting, and his 64th birthday celebration in February 2018 was held at Pinot’s Palette. He passed away from lung cancer the following December.
Maria shared that her family had raised funds for research through LCRF’s Free to Breathe Walk since her father’s diagnosis, and decided they wanted to do more. Painting together for a purpose seemed the perfect way to mark what would have been his 66th birthday.
At
just 45, Michael is facing stage IV lung cancer. “My story started with pain in
my arm when we were about to take a family trip to Alaska,” he said. “A doctor
told me my arm was okay, but he wondered how long I’d been coughing. He ordered
a chest X-ray and told me to see my primary care physician when I got back.”
Michael was still coughing when he returned home. Even more disturbing, he found himself out of breath one night while on a short walk. After checking back with his doctor, he saw a pulmonologist and underwent a CT scan.
He was shocked to discover he had lung cancer that
had already metastasized to his liver, bones, and possibly his brain. “I’ve always strived to
make healthy decisions – exercising, eating right, and never smoking – which
made the news especially surprising to me,” he explained. “At the time, I
didn’t realize that lung cancer can affect anyone.”
Michael deteriorated quickly as he went through more analysis. At one point, he was rushed to the emergency room with a suspected brain bleed. Fortunately, there was no bleed and no cancer in his brain. Eventually, he received his full diagnosis: stage IV non-small cell lung cancer with an ALK mutation.
Thanks to research, ALK-targeted therapies have been developed that have allowed Michael to take a pill — at least to start — as opposed to other more familiar and devastating forms of treatment. Many people eventually develop a resistance to those therapies in a short amount of time, however. That’s where continued research comes in, striving for new medications and treatment regimens that can act as alternatives or help patients avoid developing resistance.
“LCRF has been a great source of hope for me and other people affected by lung cancer, because the organization is funding the next generation of researchers who are discovering those better treatment options.”
Michael’s wife Janis and their children want to have
many more years with him. Through February 29, Michael’s family is doubling all
donations, up to $10,000.
“Being here tomorrow means the world to me and my family,” he said. Help Michael and others like him by making a gift of any amount. You can make twice the impact. Donate today at lcrf.org/Michael.
ASCO recently published its 15th annual report on Clinical Cancer Advances in the Journal of Clinical Oncology. The report details the advances made in clinical research and highlights key areas of research progress that improves cancer outcomes. Several of these key advances are from lung cancer research. Read below for the details:
‘Aggressive’ treatment leads to extended survival for select patients with advance NSCLC
The use of “local consolidative therapy” radiation after surgery may provide up to three times as much progression-free survival for patients versus those who undergo standard maintenance or observational treatment.
First new standard-of-care treatment FDA approved for SCLC made since the 1980s
In March 2019, atezolizumab (Tecentriq) was FDA approved for first-line treatment of extensive-stage SCLC (in combination with chemotherapy). This treatment approval is the second approved treatment for this aggressive type of lung cancer.
New standard-of-care treatments made for advanced non-squamous NSCLC
Durvalumab and Pembrolizumab was shown in clinical trials to extend overall survival for advanced non-squamous NSCLC, a lung cancer diagnosis that occurs in 20-30% of all lung cancers. Providing better standard treatment options for such a commonly occurring disease is critical.
As progress in lung cancer research continues to accelerate, we are looking forward to this year’s ASCO Annual Meeting and hearing updates from many of LCRF’s talented investigators and Scientific Advisory Board members.
Brandon Schneider ran with Team LCRF at the 2019 TCS New York City Marathon.
The LCRF fitness community, Team LCRF, will be part of two endurance events in New York City this year. Team LCRF athletes train for events such as marathons and triathlons while raising funds and awareness for lung cancer research.
On Sunday, May 3, Team LCRF bikers will participate in the 2020 TD Five Boro Bike Tour. This is the largest bike ride in the United States, where 32K cyclists of all skill levels come from around the world to bike through every borough of New York City on streets totally free of cars. Get started by filling out this form.
Then on Sunday, November 1, Team LCRF will take part in the 50th TCS New York City Marathon. This will be our 2nd year as an official charity partner with the marathon. Last year’s group included runners honoring loved ones, as well as two former LCRF grantees, Drs. Balazs Halmos and Kwok-Kin Wong. Together they raised over $50,000 for lung cancer research!
If you are interested in running the marathon with Team LCRF, fill out this form.
Anygoal-oriented fitness activity can be turned into a fundraiser. Running, swimming, biking, mountain climbing…you name it! Visit lcrf.org/fundraise-your-way to learn more and join our Team LCRF community.
