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.

Dr. Jack West

Concern about Long-Term Recurrences after SBRT: More than We Might Expect?

January 27th, 2012 - by Dr. Jack West

  A new report was just published by a Japanese lung cancer group (in Kyoto) that describes their new observation that a higher than expected proportion of their patients who underwent stereotactic body radiation therapy (SBRT) for an early (node-negative) lung cancer developed late recurrences, even well beyond five years (For those unfamiliar the focused radiation approach known as SBRT, is is a very good summary of the topic). Some Japanese centers have been among the real pioneers in SBRT, doing it for more than a decade, often on patients who had medical issues that made it difficult to have them undergo surgery.  These early encouraging results have led to SBRT now being practiced around the world, based on favorable local control and outcomes going out at least a few years from the procedure.  One current question is whether SBRT might ultimately be sufficiently effective to be a good alternative to surgery even for people who are very good surgery candidates.

   The authors of this report, a group of radiation oncologists, noted that we may see late recurrences beyond the time when we’d be inclined to declare an early victory for SBRT. In general,if a patient is doing well for 3 to 5 years after diagnosis and the start of treatment, we become pretty optimistic that they are unlikely to have a recurrence later.  They reviewed the long-term outcomes among 66 patients who underwent SBRT for node negative NSCLC from 1999 and 2005.  The median follow-up was only three years, so in light of the fact that these treatments were done 6-12 years ago, this median presumable indicates that many people were lost to follow-up or died in the first few years. 

Read the rest of this entry »

Share this:

Posted in Lung Cancer | No Comments »

Raising Awareness

January 23rd, 2012 - by admin

by Heather Geraghty

Awareness is the single most important aspect of a cause and without it, the cause simply could not exist.

Lung cancer impacts more people every year than any other cancer, yet it is a cancer with the least amount of awareness. In fact, when most people think about lung cancer it is usually masked by smoke. This narrow perception of the disease makes awareness that much more imperative to advocates and survivors alike.

Although nobody deserves cancer, lung cancer remains the most stigmatized. Whether you smoke or not should not matter. Big tobacco companies invest billions of dollars every year to ensure the most addictive products, and I think those who fall victim are hardly the ones to blame. Can you think of a time where you felt victim to a scam, exploitation, or addiction? Smoking is not a reason to be blamed, punished, banned or victimized by society.  And for those who smoked, they don’t deserve a “life sentence”.

I believe that lung cancer needs more awareness through educators. There are not enough people talking about the disease, advocating for patients, and encouraging a change in society’s overall view of lung cancer. It is crucial to know the facts, not just for your health but for those around you. Lung health should be universal, and prevention education should not be categorized by whether someone smokes or not.

I feel like LUNGevity Foundation is one of the only non-judgmental organizations fighting against this disease. Katie Brown, Director of Support and Advocacy, said it best when she described the Foundation as “cause agnostic”.

My name is Heather Geraghty, and I am a former cigarette smoker. I was diagnosed with lung cancer at 24 years old, and I celebrated one year lung cancer free on January 20, 2012.

I encourage you to learn the facts about lung cancer, and I challenge you to spread awareness.

“Hope is both the earliest and the most indispensable virtue inherent in the state of being alive. If life is to be sustained hope must remain, even where confidence is wounded, trust impaired.” –Erik Erikson

Share this:

Tags: , , , , , , , , , , , , , , ,
Posted in Young Adult Lung Cancer Blog | No Comments »

Dr. Jack West

Some New Insights About T790M Mutations and Resistance to Oral EGFR Inhibitors

January 20th, 2012 - by Dr. Jack West

A few months ago, a lifelong never-smoking patient with an adenocarcinoma in my clinic came to see me for management of her advanced lung cancer. I sent some of her tumor material for potential molecular markers, which revealed that she had both an activating EGFR mutation (exon 19 deletion) and a de novo (prior to the start of treatment) T790M mutation associated with resistance (see review of markers in this summary). Because I didn’t know what kind of result we might see by treating her first line with an EGFR tyrosine kinase inhibitor (TKI) like Tarceva (erlotinib), we initiated chemo as her first therapy.  She did well for a while before progressing, and at that point I promptly started her on Tarceva-based therapy (actually as part of a clinical trial). I was gratified when, just a couple of weeks later, she relayed that her cough and chest pain, both clearly from her cancer, improved  greatly within just a few weeks. However, her CT scan done several weeks later revleaed a more complex result: dramatic improvement of the disease in her chest, with modest but convincing progression in the form of new bone metastases.

Thanks to a new publication in the Journal of Clinical Oncology a group of investigators in Taiwan, we now have some new insights on T790M, the mutation known as the leading cause of “acquired resistance” (loss of response after an initial good response) to an EGFR TKI. The investigators looked for both “activating” EGFR mutations (the ones known for being associated with a high probability of a good and often very prolonged response to EGFR TKI therapy) and T790M mutations in patients in Taiwan.  This group was clearly representative more of the lung cancer population in Asia more than North America or Europe: predominantly (about 75%) never-smokers, adenocarcinoma subtype in over 90%. Patient could have been evaluated before (107 patients) or after EGFR TKI therapy (87 patients) using three different methods: DNA sequencing, MALDI-TOF, and next generation sequencing.   Discussion of the details of these approaches is really outside of the scope of needed discussion here: basically, direct gene sequencing is the usual mutation detection technique, MALDI-TOF is a less commonly used novel approach done at some specialty centers, and next generation sequencing is the “gold standard” that really clarifies who has what and is exquisitely sensitive at detecting mutations even if that is in only a small percentage of cells.

Read the rest of this entry »

Share this:

Tags: , , , , ,
Posted in Ask the Experts, Lung Cancer | No Comments »

Katie Brown

Caregiver Contest Winner

January 18th, 2012 - by Katie Brown

Washington, D.C. (January 18, 2012) — LUNGevity Foundation is pleased to announce Cyndi Siegfried of  Germantown, Tenn. as the winner of its Annual Caregiver Contest, recognizing a special individual who has provided exceptional care to a lung cancer patient. Cyndi was nominated for the award by her husband Jim, a 9-year lung cancer survivor who is currently cancer-free.

Over the course of their lives, one in 14 Americans is affected by lung cancer. Lung cancer caregivers are mothers, fathers, sons, daughters, neighbors and family friends of all ages.  In most cases, they have no medical background, yet they play a crucial role in helping lung cancer survivors manage their disease, often coordinating medical care and providing emotional and physical support, in addition to tending to household and professional needs. LUNGevity Foundation recognizes the vital role these caregivers play in the fight against the nation’s number one cancer killer and honors their commitment and love with its Annual Caregiver Contest.

During the month of November, Lung Cancer Awareness Month, LUNGevity asked the public to submit nominations for an incredible caregiver. Many dedicated men and women were nominated, including husbands, wives, daughters, sons-in-laws, sisters, mothers, fathers, and friends. Cyndi Siegfried was ultimately chosen by an independent panel of judges, based on specific criteria of caregiving:

  • Being an advocate for their loved one’s medical needs
  • Being supportive and helpful with their loved one’s emotional needs
  • Successfully creating a support network around their patient

Cyndi has been the primary caregiver for Jim, who was diagnosed with lung cancer in 2002.  In his nomination, Jim noted that “in 2002, Cyndi was computer illiterate. We bought a computer and she dove in, teaching herself, in order to research my particular type of cancer, get information about trials, traditional and complementary treatments, and to find the best doctors and cancer hospitals. She has been my encourager, helping me to keep my focus on what is really important. She has been at the forefront from day one, making sure I get the best of what I need to fight this disease. But she doesn’t see herself as a ‘caregiver’ but rather as a person who loves someone with cancer.”

Recognizing the special needs of caregivers, Cyndi and Jim also founded a local in-person support group for patients and caregivers, and Cyndi recently wrote a book to help other caregivers, A Caregiver’s View from the Passenger Seat.

The winner of LUNGevity’s caregiver contest wins travel and a one-week stay for two at Cricket House in historic Gettysburg, Penn. Cricket House is owned by Debi Gemmell, who was also a caregiver for her husband, Chris. “LUNGevity recognizes the difficulty and hardships that lung cancer caregivers sometimes face and are thrilled to be able to partner with Debi to offer this prize to one incredible caregiver. We wish we could give every one of these hard-working and deserving caregivers and their loved ones a prize,” stated Katie Brown, Director of Support and Advocacy for LUNGevity Foundation.

LUNGevity Foundation has the largest grants award program for lung cancer research among lung cancer nonprofit organizations in the United States. As a thought leader and community hub, LUNGevity provides many resources to the lung cancer community, including the Lung Cancer Support Community, the largest dedicated social network providing support to anyone touched by lung cancer. As part of the online resources it offers, the Foundation recently unveiled the Caregiver Resource Center, at www.lungevity.org/caregiver, which offers emotional support, practical advice and patient advocacy advice, and other services for caregivers. It is the first online resource wholly devoted to lung cancer caregivers.

About LUNGevity Foundation

The mission of LUNGevity Foundation is to have a meaningful and immediate impact on improving lung cancer survival rates, ensure a higher quality of life for lung cancer patients, and provide a community for those impacted by lung cancer.

In order to accomplish our mission, LUNGevity funds the most promising research into the early detection and successful treatment of lung cancer. LUNGevity also supports the largest national grassroots lung cancer network, as well as the largest online support community for those affected by lung cancer.

The organization was recently awarded the coveted four-star charity ranking by Charity Navigator, American’s premier charity evaluator based on LUNGevity’s sound fiscal management and commitment to accountability and transparency.

LUNGevity seeks to inspire the nation to commit to ending lung cancer.

For more information, please visit www.lungevity.org.

About Cricket House

Cricket House is an award-winning historical property located in the heart of Downtown Gettysburg, PA, and consisting of two charming historic buildings, the Cricket Guest House and the Main House, which has recently opened the Cricket House Spa. For more information, please visit www.crickethousegettysburg.com.

Cyndi and Jim Siegfried

Share this:

Tags: , , , , , , , , , ,
Posted in Care Giving, LUNGevity | No Comments »

« Older Entries