Welcome to LUNGevity's Blogosphere!

In this space, you'll find the voices of LUNGevity's constituents: lung cancer patients and their loved ones, caregivers, scientists, event coordinators and participants, and anyone else who's interested in our progress in reducing lung cancer's mortality rates.

LUNGevity Hero Dr. Lecia Sequist

October 31st, 2014 - by admin

Boston Charity Event Photography by Walpole Charity Event Photographer, Dan Busler - Breathe Deep Boston 5K Walk

 

LUNGevity Foundation is proud to honor Dr. Lecia Sequist as LUNGevity Hero for the month of November, kicking off Lung Cancer Awareness Month. Her extraordinary contributions to lung cancer research in the fields of genetic mutations and drug resistance have changed the way we look at lung cancer.  A triple threat oncologist, she dedicates time to 15-20 lung clinical trials at any given time while also practicing medicine at Massachusetts General Hospital Cancer Center and serving as an assistant professor at Harvard Medical School.  And she does not stop there.  Dr. Sequist is a constant advocate for the lung cancer community, speaking out about lung cancer on behalf of those who cannot.  She is the perfect Hero for Lung Cancer Awareness Month, serving as a strong voice for the research community and taking initiative to better the lives of her patients and the greater lung cancer community.

Her team is responsible for several remarkable findings in lung cancer genomics, including the discovery that the type of lung cancer that patients display at diagnosis may evolve into another type of lung cancer after treatment.  The study has informed the process of lung cancer treatment, ensuring the best treatment choices are made for the cancer at its present stage and type.  Her current research project will help us better understand the development of drug resistance, which tends to occur after about a year of drug use.

Dr. Sequist is dedicated to sharing her knowledge with those diagnosed with lung cancer.  She speaks about the importance of mutational testing, which can open a whole world of targeted therapies to lung cancer patients, and about the disease in general, reminding the general population that it can affect anyone regardless of age, gender, and smoking history.  She was recently featured in Self Magazine, identifying the gap in funding between different diseases and how that affects the scientific progress for research.  She remarks on the remarkable progress our scientific community has made in finding treatments for lung cancer in the last several years, and she is energized about what the next few years hold for the research field.

“Naming Dr. Sequist as the November LUNGevity Hero is the perfect beginning to Lung Cancer Awareness Month,” said Andrea Ferris, president and chairman of LUNGevity Foundation. “Her research is changing the way we view and treat lung cancer, and her voice is changing the lung cancer paradigm of the world we live in every day, for researchers and for patients.”

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Live Long and Prosper

October 30th, 2014 - by admin

by Jeff Ehlers

jeff1

Introducing a new blog series-  A Year in the Life of a Lung Cancer Survivor 

Bookmark our blog as we chronicle Jeff’s experience in bite size blogs posted once a week.

 

“According to the notes I’ve kept scribbled on a pad by my desk, it’s been a year now. One year as a lung cancer survivor and I’m still kicking. I’m pleased to be here and glad to be offered the chance to share some of the events from my experience with lung cancer.”

July 2013:

I was at work early, as usual, that day, glad that my son’s baseball season was done for a few months and looking forward to our family vacation coming up in a couple of weeks. (cough) I was making a list of things that I needed to get done at the office before we left and thinking about the things I still had left to do at my dad’s house in Missouri.  (We lost my father on May 25th after he spent 10 months on in-home hospice care and I had been working for nearly a year to dispose of several buildings full of accumulated “treasures”.) (cough)  Our vacation was taking us to the Boston area and we were anxious to enjoy the cooler weather and see the sights in the northeast part of the country. (cough)

“That does it.”, I thought to myself after another annoying little cough.  I had been fighting this cough for about three months now.  It never seemed to get worse and it never got better.  It wasn’t bad enough to justify a visit to the doctor, I thought, but my wife, Diane, had been telling me that I needed to make an appointment and get something for it before we went on vacation, so at 8:00 AM, I called the office and scheduled a visit for that afternoon.

After the normal routine of the medical exam and the back and forth questions that always go along with it, my family doctor could not find any definite cause for my cough and, almost as an afterthought, said that he wanted to get a chest x-ray.  After completing the x-ray and giving me a precautionary prescription for some antibiotics, he sent me on my way with his customary salutation to, “live long and prosper.”

(COUGH)

 

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LUNGevity Heroes Ellen Sigal and Jeff Allen

September 22nd, 2014 - by admin

LUNGevity Foundation is proud to honor Friends of Cancer Research Chairperson and Founder Ellen Sigal, PhD, and Executive Director Jeff Allen, PhD, as LUNGevity Heroes for the month of September. Their dedicated work in the field of cancer has contributed to the launch of Lung Cancer Master Protocol, also known as Lung-MAP, an innovative new system for conducting clinical trials.

Ellen Sigal

Ellen Sigal

Lung-MAP, a collaboration of Friends of Cancer Research and their government and industry partners, is a groundbreaking clinical trial model that uses a targeted screening approach to match patients with promising new treatments based on their unique tumor profiles.

In short, the trial has the unprecedented ability to test five experimental drugs on patients who are best matched to succeed with the treatments. The process is designed to consider the needs of patients, researchers, developers and all others in the lung cancer community, and has countless benefits for all involved, including the ability to speed up research results for the scientific community, expedite drug accessibility to the patients—for many time makes all the difference—and increasing the rate of successful drugs coming to market.

Jeff Allen

Jeff Allen

“Dr. Sigal and Dr. Allen’s work has created the exciting yet rare opportunity for government agencies, pharmaceutical companies, advocacy groups, nonprofits, and the lung cancer community to come together toward a common goal: increasing the speed and efficiency of our research progress,” said Andrea Ferris, president and chairman of LUNGevity Foundation. “Through creative collaboration, we can make a difference in providing vital, life-extending treatments to those diagnosed with lung cancer.”

LUNGevity Foundation is proud to support Dr. Sigal and Dr. Allen and other trailblazers, who not only advocate to government agencies for policies to improve health outcomes and cancer care, but also take matters into their own hands to form partnerships that result in the creation of pioneering solutions such as Lung-MAP. Every new approach, every new strategy, and every new technological advance puts us one step closer towards our goal of winning the fight against lung cancer.

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No Longer Alone

September 15th, 2014 - by admin

Alisa was too busy caring for her mom, who was fighting cancer, to pay any attention to her own health. She was a single mom to twin boys, her mother’s caregiver and was working full time.  Alisa just couldn’t worry about the pain she was feeling in her knees.  After her mom passed away, she eventually focused on her health again and went back to the doctor; Alisa’s knee pain had gotten worse.

Another doctor in the office suggested that she get a chest x-ray to rule out cancer since her mom just passed from it and apparently some lung cancer patients get pain in their bones from a hormone a tumor can excrete.  The x-ray didn’t rule out cancer.  Alisa was diagnosed with stage 3 non-small cell lung cancer.  The same kind of cancer that had just taken her mother’s life.

“I had a lobectomy (middle right lobe removed) and then adjuvant chemo treatments – 6 cycles of taxol/carboplatin, followed up with Integrative Care. I went to all my chemo treatments and doctor appointments alone, before I had to pick up my twins from school.”

Alisa was afraid for the future of her twin sons.  She felt isolated and alone after her diagnosis and didn’t have a large support network.

Social media didn’t really exist at the time of Alisa’s diagnosis and treatment in 2000, but eventually she found the Lung Cancer Support Community, the message boards at LUNGevity

“The message board was a lifeline for me, not just for the emotional support but for the informative information and recommendations passed on by other survivors and caregivers. I was so alone for years … it would have made a world of difference to me if there were the LUNGevity brochures in the various medical offices.  I can’t imagine my life if I didn’t later stumble across Katie and that message board on my own.”

When asked what advice she would give to someone newly diagnosed Alisa says;

“Make sure to get a second, or even a third, opinion – there is no rewind button.  Do not get stuck on statistics as there are many survivors who were told nothing can be done yet they have been thriving for years.  I would also give the information to LUNGevity’s website and encourage them to reach out.”

“The best thing about this experience is attending LUNGevity’s national Hope Summits and witnessing the amazing strength and compassion of my fellow survivors.  So many people that have touched my heart in an enormous way would not be in my life now if I hadn’t gotten lung cancer.”

Alisa is a 14 year lung cancer survivor.  She worries about a recurrence or new primary and, of course, Scanxiety.  She worries for her children, as many of her family members were diagnosed with NSCLC.  To combat those fears she volunteers her time and energy raising awareness about the disease at LUNGevity’s Breathe Deep NYC.

She wants to let others know they don’t have to walk the journey alone.

alisa

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A Strange Place to Live In

September 14th, 2014 - by admin

“If I had a gazillion dollars I would fund massive education programs for oncologists, getting them up to date on stage IV so that I don’t have to hear any more stories about people being sent home to die. I would fund all the lung cancer researchers (and other cancer researchers, because I think more will be done if they work together and focus on drivers rather than just the location of the primary). Then I would set up funds for every lung cancer patient and their families so that they could focus on getting well instead of money.”

toriThat’s what Tori Tomalia would do if she could help the fight against lung cancer without financial restriction.

The mom of 3 small children was shocked when she was diagnosed with lung cancer in May of 2013.  She was young and didn’t have any risk factors. It was the farthest thing from her mind.

Tori had been having difficulty breathing.  She had been getting worse for several months and her symptoms were attributed and treated as a series of chest colds, then asthma. She was given many medications but she kept getting worse.

Finally, it was recommended that she have a CT scan, which showed a huge growth in her left lung. A biopsy determined it was malignant. Subsequent scans revealed she had many bone metastases throughout her spine, hip, rib, shoulder blade, and one in her liver. Her diagnosis was stage IV, adenocarcinoma, non-small cell lung cancer.

After the initial shock, Tori began to advocate for herself.  She pushed for genetic testing and is now on a targeted drug called Xalkori. She experiences stomach issues and fatigue from the drug.

“This is a strange place to live in. I feel relatively decent but I have terminal cancer. Having cancer has made me even bolder. I have always been pretty outspoken, but now I feel like, hey, I have terminal cancer, this is no time to pull my punches. Or, as a friend said, “Stage IV is no time to be timid.” It has also helped to put time into perspective. I am more likely to do the things I want NOW rather than waiting for the right time or whatever.”

Tori says the worst thing about this experience is thinking that her kids may lose their mom.  She feels terrible for her husband and what he is going through and says she has a lot of guilt.  Keeping busy helps her to quiet some of those thoughts that run through her mind.

She speaks frankly about her experience on her blog, over social media (twitter, FB, online support groups) and tries to educate people about lung cancer and dispel some of the myths. Tori participated in the #WhipLungCancer challenge and will even be speaking at a lung cancer walk next month.

When asked what advice she would give to someone newly diagnosed, Tori said:

“Have hope. And get tested for mutations. Seriously, even if your doctor said they tested, ask for which one. They wouldn’t have found mine if I hadn’t asked, and I might be already dead because of that.

There is a lot of exciting research coming down the pike.

My goal is to stick around long enough to see the results!”

 

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