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 Chris Draft

August 28th, 2014 - by admin

LUNGevity Foundation is proud to announce former NFL linebacker Chris Draft as the August LUNGevity Hero. Since the passing of his late wife LaKeasha “Keasha” Rutledge-Draft, Chris has become an important advocate in the fight against lung cancer. Inspired by Keasha’s brave fight against lung cancer, he has made it his mission to raise awareness of the disease, shatter its stigma, and raise funds for life-saving research.

Chris_DraftIn December of 2010 Chris’ world was turned upside down when his wife was diagnosed with lung cancer. At 37 years old, she was a never-smoker and a self-proclaimed “health nut.” While training for a 10-kilometer run, Keasha began to experience shortness of breath. It escalated quickly, so she sought medical advice, and after tests and a CT scan, she was diagnosed with stage IV lung cancer. The prognosis was bad – the cancer had already spread to her brain.

Keasha had an optimistic and positive personality and refused to be discouraged by her prognosis. Although the odds were slim, together the Drafts were determined to beat the disease. On their wedding day, just 11 months after her diagnosis, Keasha and Chris announced the launch of their lung cancer foundation, Team Draft. Unfortunately, exactly one month later, Keasha lost her battle.

To honor her memory and to inform the greater community, Chris made it his mission to change the face of lung cancer and abolish the misconception that lung cancer is only a “smoker’s disease.”

“Chris Draft has shown remarkable dedication to raising lung cancer awareness and putting an end to the harmful stigma associated with lung cancer,” said Andrea Ferris, president and chairman of LUNGevity Foundation. “LUNGevity is glad to have passionate individuals like Chris on our side in the fight against lung cancer.”

Team Draft has worked closely with the NFL to raise awareness through events such as “Tackling Cancer with the St. Louis Rams” and “A Survivor in Every Stadium” and has partnered with other lung cancer nonprofits to further important initiatives. Draft was also recognized for his influential work in the lung cancer community by the SCLC (Southern Christian Leadership Conference)/W.O.M.E.N at the 33rd Annual Drum Major for Justice Awards, and was named a Global Envoy by LIVESTRONG. In his down time, Chris dedicates time to the Chris Draft Family Foundation, which empowers families to lead healthy lifestyles by focusing on education, healthy lifestyles, character development, personal responsibility, self-discipline, and physical fitness.

Share this:

LUNGevity Advocate Dan Powell

August 25th, 2014 - by Dan Powell

2013 was the best year of my life. I was newly married to the girl of my dreams. We had a new house. I adopted her son and had major career advances (winning multi-million dollar grants for our community).  But everything changed in January of 2014. I had gone to the doctor with some heartburn and occasional shortness of breath and a week later I was diagnosed with Stage 4 Non-Small Cell Lung Cancer.

It was a shock to me and everyone who knew me. You can be in perfect health with almost no symptoms and still be diagnosed with lung cancer.

My first oncologist gave me little hope, approximately 9-12 months to live.  They started Carbo-Platinum & Taxol on 1-24-13.  The second oncologist on shift that weekend had a different take. He wanted to send my tissue to be tested for genetic mutations. Four weeks later I tested ALK Positive.

I began Xalkori, a targeted inhibitor drug for people with the ALK mutation on February 18, 2014 and my most recent scan on May 1, 2014 shows that the cancer has gone into remission (from bones, lymph nodes, & lungs).  I remember thinking I looked like a lit-up Christmas tree on those first scans. Now I feel like I’m a walking miracle.

It hasn’t been easy. I have fears of recurrence.  I have a hard time keeping up with the day.  It takes longer for me to do things.  I am still doing pulmonary rehabilitation and therapy 3 days a week and I will have brain scans every 6 months.

Having a LifeLine Support Mentor from LUNGevity has really helped me. Also, being able to attend the National HOPE Summit in Washington DC allowed me to connect with other people like myself and talk to experts about my disease.

Last month I went onto complete disability retirement at the age of 36.  My new career is taking care of myself and the family, but also I want to be an advocate for lung cancer research and promoting clean air legislation.

I believe that environmental air pollution triggered my disease.  Raising awareness about the fact that anyone with lungs can get lung cancer is very important to me.

Lung cancer is the least funded cancer. More people die from lung cancer than the next 5 major cancers combined. For 1 dollar of lung cancer research there’s $24 for Breast Cancer.  Mothers and daughters get lung cancer, AND fathers, husbands, and sons do too.

I know all our time on this earth is limited, but I believe there is a purpose here for my story to be told.  I want to start a local support group.  I want to get the EPA and Congress to mandate new air pollution standards.  I want to help find a cure!

Share this:
Katie Brown

Where Did Everyone Go?

August 17th, 2014 - by Katie Brown

Where Did Everyone Go?

When people disappear (physically or emotionally) after a cancer diagnosis. 

1alone

I have experienced being someone with cancer and being someone who cared for someone with a terminal cancer diagnosis and neither side is a cakewalk.  This weekend, at the LUNGevity HOPE Summit in Seattle, we talked a lot about survivorship and family relationships in the Caregivers session and I’ve decided that being the caregiver and managing those relationships can be stress-filled and sometimes heartbreaking.

When my dad was diagnosed with terminal lung cancer, I had hoped that my large family would have rallied around him.  Instead, some sent a get-well card now and then, made obligatory phone calls or sent along emails or news articles about whey grass juicers and Noni.  What would have helped was some actual concern about how he was, how I was, and if we needed any help.

Where were they for each chemotherapy treatment?  Where were they when we were on the side of the road and dad was so sick that I had to run to the other side of the car to hold up his head?  That happened more times than I could count. Where were they when his primary caregivers- my mom and myself- needed a break?  A phone call allowing us to vent, a gift card for a massage, or meals, or an in person visit would have been compassionate and very welcomed.

Being “too busy” to help out was not a valid excuse to use.  If you want to help you find a way. I was a wife, a mom to a young son, a full time college student and worked full time along with managing my dad’s medical care daily.  Because my mom was a limited English speaker, she needed me daily, physically and emotionally supporting them both.  I didn’t sleep for about 11 months. Being too far away to help was not a valid excuse either.  Phone calls, gift cards, a sympathetic note and words of support can always be sent via email.  They weren’t.

That was 12 years ago and I’ve gotten over that resentment- to some degree.  I know after my experience who I can count on and who I can’t.  Those that I can’t count on I’ve virtually cut out of my life.  But that’s not always possible for some people to do.

One of the caregivers talked about his frustration that siblings and family members were not helpful to his wife.  They were nowhere to be found. Not only did they not help her thru her cancer experience, they continued to rely on her to care for her elderly parents and came to her for advice and financial issues- not once asking her about her condition.

One patient talked about her recent 11-day stay in hospital.  Her family, friends and neighbors had been great in asking her caregiver if they needed anything and how they could help her, but when she was finally released from the hospital she came home to rotten food in the fridge and a front lawn that had died from not being watered.

Another caregiver talked about how his mother in law compared his wife’s terminal cancer to her chronic gastritis.  She wasn’t any help to her or her family and never asked details about her cancer.

One patient talked about how her husband had set up a chore list and meal train in hopes that her extended family and church family would pitch in.  After the first two weeks, no one volunteered to help her family during their most difficult time.

 

Have you experienced abandonment of family and friends after your cancer diagnosis?  What did you do about it? 

Do you have advice for those who are going through this now?

Share this:

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.

Share this:

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

Share this: