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.

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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A Survivor Mindset

September 12th, 2014 - by admin

by Tracy Anderson

When people hear that I am a lung cancer survivor (5 years cancer free come Dec. 17, 2014) and the stage it was discovered, they look at me as if I am a big foot… you hear about them but never really see them in person.

I guess it makes sense since the 5 year survival rate stands somewhere between 15-16%, depending on which information you read.  I usually end up discussing the facts about lung cancer and try to rid us of the ugly stigma our disease carries.  Raising awareness wherever I go.  The thing is, whenever I discuss my survivorship, I am always asked, “I thought no one survives lung cancer… how did you do it?”  I usually joke about it by saying it was the Jewish Penicillin (Homemade chicken soup from scratch) I ate.  It cures everything from the common cold to cancer.  I think it may even regrow small severed limbs, but I haven’t actually tested that theory yet.  But my mom and I both couldn’t eat anything but that soup during our treatments and we are both still here.  Oh, did I fail to mention that my mom is also a stage 3B Non-small cell lung cancer survivor?  12 years for her.   Unfortunately her father was also diagnosed but only held on for about 18 months back in 1975.

Anyway…How did I make it?  Of course the care I received from my doctors was vital to the success of my treatment.  The techs who administered the radiation and the nurses who cared for me day and night in the hospital were like angels.  The poisonous Cisplatin, and Etoposide running through my veins was a necessary part of my survival, but just as crucial, I am convinced, was my attitude toward the whole situation.  It was my mindset; my personality that got me through the toughest of times.  What was so great about my outlook and attitude that made me stronger than the cancer that tried to consume me?  Well, part of it may be part of my DNA, and part of it may be my upbringing.    You see, when I was told of my lung cancer, I didn’t panic, cry, or ask why me.  .  I just shook my head and with a half laugh, looked at the doctor and said, “of course I do.”   I never really thought I wouldn’t make it.  I remember thinking, “Oh, great… I am going to be sick as hell and I am going to lose my hair.  OMG… MY HAIR!!!  What an inconvenience this is going to be!”  When we discussed the treatment options and the doctor answered my father’s question about my chances, I said, “I don’t care what # you throw out there, screw you, watch this.”  My doc smiled and said, “We need to get you into treatment ASAP while you still have this attitude!”  I mean, if my mom beat it, I was going to as well… I couldn’t fail at something she succeeded at… NO WAY!

Now about this attitude… I am a competitor.  I was a hard core athlete…still am mentally.  I would always play to win… If you don’t, you may as well stay home.  I played softball at a very competitive level and traveled across the country doing so.  I learned at a young age to never give up no matter how many runs you may be trailing.  We came from behind many times to win the game against all odds.  The game isn’t over til the last out of the last inning is made.  I remember playing tournaments… 6 games in one day playing every inning in 98 degree weather, as the catcher!  I was exhausted, both physically and mentally but I knew how important this tournament was and where it would bring my team.  I fought on and we made it to the National tournament!

As in any sport, activity, or just living life, there is a risk of injury, illness, or fatigue.  I was trained to, “Make the play, cry later”.  This is something that my dad instilled in me on the softball field when a ball took a bad hop right into my face when I was just starting out.  I was to make the play first, and then cry… if I didn’t the runners would continue to run and score on us and we would lose.  Plenty of time to cry after the play has been made.  Yeah, it sounds rough, but it made me stronger and a damn good softball player.

As I got older and met new obstacles or challenges, I found that saying to be beneficial.  It gave me the push or the drive to continue on and get the job done no matter what the situation.  It worked when I was working out, writing a term paper at 3am on no sleep, going to work with the flu, moving on after a break up, and what I consider “THE BIG GAME”.  My personal Superbowl or World Series.  That’s right, my fight for my life against Lung Cancer.  I believe I was being trained to fight this horrible disease and to help others with their battles too by playing softball and training to be the best I could be.

It is important to have a strong body when preparing for a battle.  You will do well with a young, strong, healthy body, but if your mind is weak, you will only last so long.  You need a strong mind as well… maybe even more importantly.  Good athletes train their physical body, but the best athletes, who stand the test of time, also train their minds, hearts, and souls.

I remember one night in particular where I had had enough.  I was so weak, so tired, so… done.  I really think that if I could’ve made it to a tall building with an open window or roof access, I would have considered jumping.  But then I heard my dad’s words screaming at me in my head.  “MAKE THE PLAY, CRY LATER!”  I couldn’t let him down… my “team” AKA: family.  I had to win this game… if I didn’t, not only would the season be over, but I would be permanently retiring.  So I took a deep breath, and “brushed myself off” and continued on.  On my bad days, I would also hear my mom… “tomorrow will be better.”  When it wasn’t, she would tell me again that tomorrow will be better.  Eventually she was right.  I just had to ignore the pain of today to look for the relief that “tomorrow” would bring.  I am so happy my tomorrow came.

I really believe that my mental game is a huge part of the reason I am still “playing” this game called life along with the support of those who love me.  Being that my mom had been there before me, I knew I could trust her when she said all will be fine.  She did it… why couldn’t I?  So, as my mom and I say, “Dying just wasn’t an option.”  Once you believe it, you can achieve it… BREATHE DEEP, BELIEVE, AND LIVE!!!

tracya

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