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.

Lung Cancer Advocate Jane Elterman

July 29th, 2014 - by Jane Elterman

Jane Elterman was diagnosed with lung cancer in 2008. After struggling with a sore neck, she went to her doctor during her lunch hour. Within a few hours, her life changed forever.  She was diagnosed with end Stage IV Adenocarcinoma.

The diagnosis was sudden and shocking.  Jane hadn’t smoked in over 20 years.  Like a lot of people diagnosed with lung cancer, Jane struggled with the stigma associated with it.

“The first question is ALWAYS, “did you smoke?”  I hadn’t smoked in over 20 years, but it still doesn’t mean I deserve to die.  My first 18 years of life, I lived with a heavy smoker. I didn’t have a choice then, he was my father.”

At LUNGevity’s HOPE Summit, Jane learned about the statistics and ways to educate people about the misconceptions about lung cancer.

“It’s not just a preventable disease or a smoker’s disease.  Over 60% of people who get lung cancer are never smokers or long time ex-smokers.  Anyone with lungs can get lung cancer.  It claims the lives of more women under forty than breast cancer does.

I am so happy to have statistics to inform people of the misconceptions about lung cancer.  It’s such a great way to communicate a very effective message!”

We asked Jane, “What advice would you give to someone newly diagnosed with lung cancer”?

“Always get a second opinion!  (I did a segment on Good Morning Texas about this early this year!)  It is your life and you must participate in your care.  I lost my beloved first husband, Blaine, to cancer, when he was 36.  My biggest regret is that we just did everything his doctors recommended, but we NEVER got a second opinion.  Of course, I didn’t know that lesson would serve me well later.

Besides getting a second opinion every time your treatment changes…I would say try to keep some “normalcy” in your life, even if you have to create that normal; and you most certainly don’t feel normal while you undergoing the fight of your life.  Fake it until you make it has been a credo for me! “

Jane wishes she had thought of herself as a ‘survivor’ back when she was first diagnosed.  LUNGevity supports the NCI definition of a survivor- anyone who’s ever been diagnosed with cancer from the moment of diagnosis, and for the rest of their lives.  Jane learned that at LUNGevity’s HOPE Summit.

“It hadn’t crossed my mind before becoming a member of this great group.  I feel so much stronger with that label.”

When asked what support resources have helped to aid in her survivorship, Jane says:

“CTCA is where I’ve been receiving treatment since April 2010 and they have been phenomenal in their support.  I see a naturopath and acupuncturist at every visit; they are a great part of my team.  However, Lungevity has become invaluable as a resource!  Wish I’d know about the organization sooner.

I prefer monitoring my nutrition and taking natural supplements, versus prescriptions. When the “authorities” put an expiration date on your life, you don’t want to miss a minute being sleepy and numb!  CTCA excels at providing alternative treatments and supplements for relief from side effects, nutritional and exercise information for the prevention of new disease.”

Today Jane is living well with lung cancer.  She talks to patients, doctors and caregivers all over the country sharing with them information about lung cancer and the statistics.  She talks about the need for more research, more funding and how patients need much more information than they are receiving.

“I know I’m a miracle and thank God diligently for this! Now, I have my heart set on doing something that makes a difference!”

Jane has also participated in LUNGevity HOPE Summit Dallas and DC and offers to connect with others who may need support or inspiration.

Jane speaks regularly on behalf of Cancer Treatment Centers of America (CTCA), where she is treated.  She’s also in the background of one of their commercials that is currently airing. She has given radio and television interviews and did a segment on GMT with her oncologist Dr. Simeon Jaggernauth.

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9 Steps for UV Safety

July 12th, 2014 - by admin

By Therese Nadler

Skin cancer, while largely preventable, is the most common form of cancer in the United States. But by following some simple steps, you can enjoy time in the sun safely and protect yourself from overexposure, which can be dangerous.  Excessive exposure to ultraviolet (UV) radiation from the sun can not only cause painful sunburns, but can also lead to more serious health issues, such as skin cancer, premature aging of the skin, and cataracts and other eye damage. Below are some tips to help make sure you manage the summer sun safely this year!

1Wear Sunscreen – Apply it generously! Cover all exposed skin about 20 minutes before going outside. Choose a sunscreen that has an SPF (Sun Protection Factor) of at least 15 with protection from both UVA (ultraviolet A) and UVB (ultraviolet B rays).

 2. Avoid Burning – Sunburns increase your lifetime risk of developing skin cancer, especially when you get burned as a young child. It’s best to try and minimize time (or stay out of the sun entirely) between 11am and 3pm when it is strongest.

 3. Reapply Often – Reapply, reapply, reapply! At least every 2 hours, especially after swimming and/or sweating, even if your lotion is waterproof or the day is overcast. Always put sunscreen on first, before applying makeup or insect repellant.

 4. Wear Protective Clothing  & Find Shade – Choose long sleeves, broad-rimmed hats, sunglasses, and even pants, if possible when outside in the direct sun. Seek shade when you can and/or plan to bring an umbrella with you to create shade if none exists naturally in your environment.

 5. Avoid Tanning/Tanning Beds – UV light from tanning beds (as well as the sun itself) can cause skin cancer and premature wrinkling. Best to avoid!

 6. Use Caution Near Water, Snow, and Sand – These elements tend to reflect the sun’s damaging rays, which can increase the likelihood of sunburn. Always use sunscreen even on cool or cloudy days whenever you are near water, snow, and sand.

 7. Check the UV Index – The UV Index is a forecast issued by the National Weather Service and EPA everyday. It’s a good resource to help you plan outdoor activities in order to minimize overexposure and prevent long-term sun damage.

 8. Get Moles Checked – Early detection of skin cancer saves lives.  Moles that are new or have recently changed shape or color should be evaluated by a dermatologist as soon as possible.

 9. Vitamin D – Use caution when relying on sun exposure to get your Vitamin D. It is safer to get adequate amounts of Vitamin D from your diet – by eating foods that are well-fortified or through physician-supervised supplementation, rather than spending time in the sun without wearing any sunscreen (no matter what skin tone you have!)

Everyone looks forward to summertime, but it’s important to take the appropriate steps to protect yourself from overexposure to the sun.

References:

http://www2.epa.gov/sunwise/action-steps-sun-safety

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July LUNGevity Hero Bonnie Addario

July 9th, 2014 - by admin

LUNGevity Foundation is proud to announce Bonnie Addario as the July LUNGevity Hero. Bonnie was not only able to tackle her own disease, but also has helped others in their own battles – raising money for research, providing patient support and advocacy, informing individuals about the disease, and addressing the unjust stigma that has left lung cancer both the leading cancer killer and the least researched.  She has also worked to raise awareness of life-saving lung cancer research into early detection methods such as CT scans which diagnosed her own disease early enough to give her a fighting chance.

In December 2003, after several misdiagnoses of her condition, Bonnie learned of her diagnosis.  She was no stranger to lung cancer.  She knew the battle she had ahead.  The disease had affected five people in her family, three of whom had died.  Her fight was just beginning.

With a tumor inconveniently located behind her heart, Bonnie endured a multitude of treatments.  It was arduous.  But after countless radiation and chemotherapy treatments and a 14 hour long surgery, Bonnie was able to beat the disease.

“I was amazed to find out that I actually knew nothing about the disease,” Bonnie admits of herself upon first diagnosis. “Being misdiagnosed and on a treatment journey that was going downhill really, really quickly I realized I had to be an advocate for myself to get the best possible care to survive.”

She has made it her mission, since beating lung cancer, to share her story and raise awareness of the disease and the importance of the early detection technology that saved her life. She joined the Thoracic Oncology Board at University of California at San Francisco and the Foundation Board of Sequoia to help inform others about the disease.  In 2006, Bonnie created a foundation for lung cancer, the Bonnie J. Addario Lung Cancer Foundation, to further empower patients at a time when support and educational resources about lung cancer were limited at best.  In 2008, Bonnie created ALCMI, a patient-centric, international research consortium. Since then, Bonnie has inspired many in her quest to bring hope to the fight against lung cancer.

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28 yr old Makes Film After Lung Cancer Diagnosis

July 8th, 2014 - by admin

 

“Making this movie means we are not victims to cancer.
Making this movie means we are survivors, ready and willing to share our story with the world in the artistic medium that we love the most, film.

Jonathan and I met in college and our first and happiest experiences together were of making movies.

This is what we’ve wanted to do all of our lives. A diagnosis of cancer is not going to stop us, but fuel us to do what we love with more passion, creativity, and love than ever before.

Cancer is the scariest thing I have ever encountered. It has made me contemplate life and death and made me become fearful of tomorrow.

However, it has also awakened my soul and forced me to see the beauty of the here and now. ”

The Director’s Story…

Just over one year ago, at the age of 26, I was diagnosed with lung cancer. I have never been a smoker and have lived a healthy lifestyle. I learned that I had a genetic mutation and realized that cancer can and does strike anyone, no matter your age.

I was in the process of editing my latest short film, “Picture Show,” a film oddly enough about growing old and facing the realities of life and death, when I began my chemotherapy treatment and started what would be a very long and on-going battle.

This is a film for all of those that are facing the unknown. Searching for comfort. Not just those who are sick, but those that act as caregivers and supporters.

This is not a film about illness or anger or depression; instead, this is a film about seeking that which is so easily lost: HOPE.

We have a fairly low budget and all money raised will go towards paying, housing and feeding our very talented cast and crew.

My payment is being able to share a very personal part of my life.

- J. Michael Hicks

The Film’s Story…

A young woman seeks spiritual enlightenment after being diagnosed with cancer.

Through montage, collage and the poetry of the moving image, we witness her journey.

Facebook page: https://www.facebook.com/pages/Nirvana-a-short-film-about-cancer/598777076879059

When Will Principal Photography Begin?

Our anticipated starting date is July 18-22, 2014 near the Atlanta area in Georgia in and around the community of Serenbe.

Who Are We?

J. Michael Hicks (Writer/Director/Editor)

A graduate of the Savannah College of Art and Design with a BFA in Film and Television, J. Michael Hicks worked for the Independent Film Company Oscilloscope Laboratories in New York. There, he assisted in distributing 6 feature films, including two Oscar Nominated films. He was the 1st Assistant Director of the award-winning feature film, 45RPM, and he co-directed and edited the award-winning short film, “Picture Show,” which is currently playing in several festivals.

Robyn Rebecca Young (Lead Actress/Producer)

Another graduate of SCAD, Robyn received her BFA in Performing Arts and studied at the Atlantic Acting School co-founded by famed playwright David Mamet. Since then, she has worked for the Serenbe Playhouse, where she began as an intern and became the companies’ first full time employee as Executive Assistant. Most recently, Robyn wrote and co-directed, “Picture Show,” and was honored with the Best Short Screenplay award at the Ozark Foothills FilmFest. Starting this fall, Robyn will be attending SCAD Atlanta where she will be pursuing a MFA in Film and Television.

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The Power of Saving Grace

July 8th, 2014 - by admin

by Robyn Hicks

 

As Jonathan’s wife/partner/soulmate, I was completely shaken at the time of his diagnosis. At the mention of lung cancer, I had to leave the room. My father died of lung cancer when I was 13 years old. I felt I was robbed the experience of a father, now my husband was being taken away. I panicked. Our life, as I knew it, was over.

Since, I have been depressed, angry, inconsolable, weak.

I have prayed harder in the past year than I have all my life. I have searched for answers and solutions and have dug deep down inside to muster the slightest hope for our family and our future.  Jonathan has been my saving grace in life, offering me more love than I could ever imagine. I still believe what we are going through is unfair; however, I do have a lot of faith in God and in advancements being made in research for lung cancer treatments.

Because of a genetic mutation called ALK, Jonathan has more treatment options available and I will do everything I can to make sure he gets the best treatment at the best institutions so that our future can be as bright as possible.

At first, I rejected my role as caregiver.

I wanted to be young and carefree. I wanted my life to look like the life of other twentysomethings who were invested in their career or preparing for babies. Now, I have learned and continue to learn the power of saving grace and thankfulness for each and every moment of our life together.

I quit that job that I hated so much. I stopped telling myself I had to be a success and make money. I was forced to stop. My life literally stopped. When the dust settled, treatment options were available and we sought advice and support from other lung cancer patients, caregivers, and the LUNGevity organization.

I realized that taking life one day at a time was not all that bad. It was like I began seeing in Technicolor after only seeing darkness. I appreciated the beauty in our simple, ordinary lives.

Jonathan is my greatest gift in life. I will do all that I can to care for him and love him each and every day.

___________________________________________________________________

Read more about Robyn and Jonathan and their new short film, Nirvana.

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