CindyA

Here is link to the artilce: http://www.prnewswire.com/news-releases/aria-health-raises-awareness-and-funds-for-lung-cancer-prevention-as-it-hosts-inaugural-aria-health-lung-cancer-runwalk-300143233.html
 
This link is to the hospital website: https://www.ariahealth.org/programs-and-services/lung-cancer-screening-program
 
Specifically to providing free screenings to uninsured and underinsured members of the communities Aria Serves throughout the year.
 
PHILADELPHIA, Sept. 15, 2015 /PRNewswire/ -- Aria Health is proud to announce its first annual Aria Health Lung Cancer Run/Walkon Sunday, September 20, 2015 at the Washington Crossing Historic Park Towpath in Washington Crossing, Pa. The family-friendly 10K run, 5K run and walk, and 1K walk for kids is intended to raise awareness for lung cancer prevention and to promote lung health. Proceeds from the event will go towards Aria Health's ongoing Lung Cancer Screening Program efforts, specifically to providing free screenings to uninsured and underinsured members of the communities Aria Serves throughout the year.
"Lung cancer is the leading cause of cancer death in our country which is why it is so crucial to take action and raise awareness of the importance of lung health in the areas we serve," said Richard S. Chang, MD, FACS, director of thoracic surgery at Aria Health. "In 2014, the Lung Cancer Alliance (LCA) distinguished our Lung Screening Program as a Center of Excellence, and this Lung Run is just another example of our continued commitment to the community to create awareness and provide education on lung cancer."
The largest healthcare provider in Northeast Philadelphia and Lower Bucks County, Aria Health will kick-off the first annual Lung Cancer Run/Walk on Sunday, September 20 at the General Greene Pavilion in Washington Crossing Historic Park. The competitive and timed 10K and 5K course will begin at the Washington Crossing Historic Park along the towpath in Delaware Canal State Park. The kids 1K course will take place on the Circle of Concentration. Registration will open at 6 a.m., and the first run begins at 8 a.m.
In addition to the run/walk, the event will also feature giveaways and activities for runners, walkers and attendees including face painting, balloon making and tours of an ambulance and a fire truck. Registration for the Aria Health Run/Walk is now open! For more information about the run or to sign up to participate, visit AriaHealth.org/LungRun. The registration fee is $30 for adults, and children 12-years-old and younger can register for free. Registration is also available on the day of the event.
 
Aria Health Offers Community Wide Lung Health Programs
The Clearing the Air Smoking Cessation Program
According to the American Lung Association, men who smoke are 23 times more likely, and women 13 times more likely to develop lung cancer compared to those who have never smoked. To educate and help people in the community quit smoking, Aria Health will offer a free, five-week program at both the Bucks and Torresdale campuses:Aria Health – Bucks County: Every Monday from September 21 - November 19, 7:00-8:30 p.m. Aria Health – Torresdale: Every Wednesday from November 4 - December 2, 7:00-8:30 p.m. Registration is required. To register, please call 215-710-2264 for the Aria Health – Bucks County classes, and 1-877-808-ARIA (2742) for the Aria Health – Torresdale classes.
Lung Cancer Screenings
Aria Health offers low dose CT scans for the early detection of lung cancer, which are offered on an ongoing basis by appointment. Screenings are recommended for current smokers or smokers who have quit in the last 15 years who are between the ages of 55 and 80-years-old. For those who would like more details on the program or to schedule a screening, please call 215-612-5050. For more information about the programs offered at Aria Health, please call 1-877-808-ARIA (2742) or visit AriaHealth.org.
About Aria Health
Aria Health is the largest healthcare provider in Northeast Philadelphia and Lower Bucks County.  With three leading-edge community hospitals and a strong network of outpatient centers and primary care physicians, Aria upholds a longstanding tradition of bringing advanced medicine and personal care to the many communities it serves. For more information about Aria Health please visitwww.ariahealth.org "Like" Aria Health on Facebook at www.facebook.com/ariahealth and "Follow" Aria Health on Twitter at@AriaHealth.
Media contacts:
Jessica Jacobs, Brian Communications
484.385.2958
jjacobs@briancom.com  
Maria Cerceo Slade, Aria Health
215.710.3768
mcerceo@ariahealth.org
 
SOURCE Aria Health

RELATED LINKS
http://www.ariahealth.org

Hello everyone!  It has been years since I've posted, but I have been keeping up with the Facebook Message Boards.  I am wondering if anyone knows anything at all about this blood test for lung cancer.  Does anyone know any hospitals in the US working with the Early CDT test?  I couldn't find any in my online search.
 
Thanks!
 
http://www.earlycdt-lung.co.uk/patient

Xingxing,
 
Here is an idea to help with the expense for ALK targeted treatments.  Try a direct appeal for financial support to the companies that make the drug.  Tell them you are from Cambodia and cannot afford the treatments.  Here is where you can send your email request:
 
Xalkori is made by Pfizer.  Email Pfizer with your request for financial assistance here: http://www.pfizer.com/contact/contact_us_support
 
Zykadia is made by Novartis.  They have a global patient assistance program called Novartis Oncology Access (Shared Contribution).  Novartis uses the Max Foundation for charitable dispensing of its cancer drugs.  I found the Max Foundation network partners for both Cambodia and Thailand here: http://www.themaxfoundation.org/maxglobalnetwork/networkpartners.aspx#
 
You would need to compose a request that explained your mom's diagnosis (provide information on type and stage) and your financial information (income).  You might also need to identify a charitable partner in Cambodia or Thailand that would provide medical support while the drug is administered.
 
I do not have any experience in international requests for support but I hope this information assists you and your mom.
 
Stay the course.
 
Tom

keep us posted and we can see if we can help out somehow for ya!!! tell mom good luck on getting into the trial... the trick is to stay alive until the cure is found... we have lots who have beat their doctors your going to live predictions so do not buy into that too much if you can.. no one knows how long we have!!!  but please keep us posted and we can se what we can come up with to help out some how for ya!!!

I was diagnosed with Stage 4 metastatic non small cell adenocarcinoma of the lung this past April. I tested positive for the ALK gene and am taking a chemo pill Xalkori, which is very expensive however, it seems to be working. I do not have much knowledge of your country or places you can get help with the cost of the drug. I know Pfzier puts out this med in America and they offer financial assistance to those in need of it. Check out their website. Praying for you and your mom.

Welcome here!
 
Lung cancer patients, caregivers, family and even medical practitioners struggle to keep life moving.  But, every once-in-a-while we get a win.  Lung cancer survival statistics are indeed bleak.  I found hope in a Stephen J. Gould's essay called "The Median isn't the Message."  You can listen to it here:  
  
When diagnosed with inoperable cancer, I was given about 6 months to live.  My disease is non-small carcinoma but the difference at late stage is academic.  I survived because of the push I got from wife and family and because I had a superb oncologist who noticed a good response during my chemotherapy.  In 2004, there were few chemo drugs available so my first line chemo failure did not get a change in recipe.  We repeated taxol carboplatin through second and third line failures.  Then the FDA approved Cyber Knife radiation for certain types of lung cancer tumors and mine just happened to be the certain type.  I'd stayed alive just long enough for my cure to emerge from research.  If I can live, so can your mom!  In February, Good Lord willing, I'll have lived 12 years beyond diagnosis.
 
I encourage you to read-in to the disease.  Knowledge is power and there is a wealth of information about small cell carcinoma at Lungevity.org  Here is a link you might find helpful as a caregiver - www.lungevity.org/caregivers  
 
You will likely have lots of questions and folks here might have answers, so ask a way.
 
Stay the course.
 
Tom

Good Evening All, 
 
Thanks for all of your responses. It is very much appreciated. 
 
CindyA, I don't believe I was told exactly what type of Lung Cancer it is (Just another reason for a second opinion). The amazing thing about this Oncologist is that he makes a statement, then looks me in my face for a reaction. I guess he is so busy attempting to push my buttons that he is neglecting to tell me everything. 
 
Cheryncp123 - I believe they did a genetic testing with my blood sample in order to see if I was to take the oral chemo, and was told that I could not. Don't know if that is the same test, but, I will ask the next time I go back. 
 
RandyW, I appreciate the insight. I have done some research outside of these forums, and found that it is all based on an individual basis. I believe the common thread of it all is, once you make the lifestyle changes (food, prayer, excercise, etc), you cannot revert to your old ways. 
 
I will you all posted on my progress, and my methodology used. 
 
Thanks again

BigBrowne,
 
Welcome here.  I'll take a stab at answering your questions.
"Am I looking to deeply into the process?"  Assume you refer to conventional and alternative treatment methods and if so, my answer would be no.  I believe information is your ally that will allow you to make important decisions about your treatment alternatives. "Does anyone have any great solid advice or leads that I can look into?" Again, assume you are referring to treatment methods, then Lungevity.org is a good source of information and there are many good web-based information tools available.  Beware however those that forecast or tout a "miracle cure".  There are no miracle cures but there are miracles.  I am one having survived unsuccessful surgery, first, and second line chemotherapy.  I lived long enough for an experimental "Cyber Knife" procedure to be approved for lung cancer patients and that saved my life.  That I lived that long was indeed a miracle.   "... about the success of medical marijuana...." What I've read about medical marijuana is its success in pain management.   "Am I wrong?"  Only you can make the treatment decisions for your cancer so a decision you make cannot be wrong.  It may not be the decision others might make but that will not make your decision wrong. Here is some information I'd read to supplement your research into alternative cancer treatment methods: http://www.quackwatch.org/00AboutQuackwatch/altseek.html and here - https://www.sciencebasedmedicine.org/medical-marijuana-as-the-new-herbalism-part-3-a-cannabis-cures-cancer-testimonial/ Stay connected and let us learn about your treatment decisions.
 
Tom

if you are curious as to what this forum offers on alternative treatment just type in alternative treatment into the search bar above. lots of great info in there about that treatment... we used to have an entire forum dedicated to that type of treatment but do not see it now... I think your doing the right thing and if you go that route let us know and keep usp osted on how things are going please.. might be an inspiration to someone else down the road!!! .

This is a great piece on ‪#‎lungcancer‬ survivor Jane Elterman. Jane participates in LUNGevity's Breathe Deep DFW event every November. Read and share!
http://www.cancerfightersthrive.com/move-every-day/
 
 
Move Every Day Exercise can improve quality of life and decrease the odds of cancer diagnosis or recurrence. 
By Heather Stringer
 
 
 
After 28 chemotherapy infusions, Jane Elterman could not even imagine integrating exercise into her life, despite gentle encouragement from her care team at Cancer Treatment Centers of America® (CTCA) in Tulsa, Oklahoma.
At 49, Jane had been diagnosed with stage IV adenocarcinoma in late 2008 after going to the doctor for a simple neck ache. Jane, who lives in Carrollton, Texas, was in disbelief when she learned that cancer had spread to her lymph nodes, jugular vein and all five lobes of her lungs.
Initially told that she had three to five months to live, Jane sought a second opinion at CTCA®
Learning to be a survivor, however, has presented its own set of challenges. A year after she completed chemotherapy, Jane still suffered from neuropathy (tingling and numbness in her toes and fingers) and severe pain, she was exhausted by simple tasks like loading the washing machine or driving to the store and she needed at least two naps per day.
Then, in 2013, she heard something that completely changed her mindset about the importance of overcoming these barriers to become more active: a naturopath at CTCA mentioned that exercising 30 minutes per day five days per week could reduce the risk of cancer recurrence.
“It was a lightning bolt for me,” says Jane, now 56. “I knew I could not get rid of the cancer that was still in my lungs, but it was really important to reduce the risk of metastasis. I wanted to do whatever I could to be around for the major life events like births, weddings and graduations for the people I loved.”
Inspired, she started by swimming a few laps in her pool. Although it was intensely painful to walk down the steps of the pool into the water, Jane kept swimming every day. After a month she noticed her endurance improving, and eventually she could swim continuously for 30 minutes. Next she braved the elliptical machine at the local gym. She cried most days during the first week from the neuropathic pain, but slowly that decreased. She then worked up to 30 minutes of walking on the treadmill, and now she looks forward to walking outside three to four miles per day with her two dogs. Her energy level is higher than ever, and she has even started job hunting for work in the nonprofit sector.
Defining Exercise
Although Jane’s journey included visits to the local gym, Physical Therapist Kelly Prater Whitmore, PT, CLT, is quick to remind patients that exercise can include a wide variety of activities beyond typical gym options. “Many people think they can’t exercise because it means lifting weights at the gym and running on a treadmill,” says Whitmore, who works at CTCA in Newnan, Georgia. “But exercise can be marching your feet, tapping your toes or doing exercises in a chair. It really depends on your level of strength and endurance.”
The American Cancer Society recommends that adults get at least 150 minutes of moderate intensity or 75 minutes of vigorous intensity activity each week. Moderate intensity is defined as anything that “makes you breathe as hard as you do during a brisk walk,” which could include mowing the lawn, dancing, walking and golfing. Vigorous activities cause a noticeable increase in heart rate, faster breathing and sweating, which could include jogging, singles tennis and swimming.
“For patients who have been diagnosed with cancer and are in some stage of treatment, it is best to meet with a medical professional before starting an exercise routine,” Whitmore says. “We evaluate their strength deficits and can tailor the program accordingly.”
A typical program includes cardiovascular, strength and flexibility exercises with a physical therapist and a home exercise program to build on this, Whitmore explains. She typically offers several options for home exercises and suggests that patients pick the ones that work best for them. For example, someone could walk the aisles of a grocery store for 15 minutes before shopping for food, or complete 10 to 20 repetitions of an exercise during television commercial breaks.
Although some patients express fear that exercising will increase their level of pain and fatigue, Whitmore teaches them that usually the opposite is true. A study published in the Journal of Clinical Oncology in April 2015 found that exercise decreased pain in breast cancer patients who were suffering from joint pain while taking aromatase inhibitors. The participants who increased their exercise time to approximately 160 minutes per week experienced nearly a 30 percent decrease in their pain levels, while women who did not exercise experienced a 3 percent increase in pain.
Joints are more prone to become stiff, achy and painful when people are not moving because the muscles become weaker, which can cause more stress on the joints, Whitmore says. In addition to lessening pain, exercise can decrease other side effects from treatment, such as fatigue, bone loss, scar tissue, shortness of breath, insomnia, diarrhea, constipation, anxiety and depression, Whitmore says.
An increasing number of studies also suggest that staying active can be an effective preventive strategy. According to the American Cancer Society, poor diet and inactivity are two key factors that can increase a person’s cancer risk. These factors have the potential to increase an individual’s amount of excess weight, which causes the body to produce and circulate more estrogen and insulin—hormones that can stimulate cancer growth.
A French study published in 2014 found that postmenopausal women who exercised moderately for four hours per week in the previous four years had a 10 percent lower risk of breast cancer than women who exercised less than that. The researchers also found that risk-reducing benefits quickly disappeared if women stopped exercising.
Now Is the Time
Although it may be tempting to procrastinate when it comes to exercising, Whitmore encourages people at any stage of life—regardless of whether they have cancer—that any movement is better than no movement. When she graduated from physical therapy school 25 years ago, patients were discouraged from exercise during treatment, and the consequences of this became evident. “People would get so deconditioned that they felt it was harder to become active again than to overcome the side effects of chemotherapy and radiation,” Whitmore says.
She acknowledges that cancer treatment has many phases, and consequently exercise routines will likely need to be modified as patients go through these phases. For Jane, moving every day has become an essential part of life that gives her serenity despite an uncertain future.
“After feeling betrayed by my body, it was truly empowering to see myself continue to get stronger,” Jane says. “That sense of accomplishment helped me regain my confidence, and I even sleep better because I am not worrying about whether I will be around for the next special milestone.”
No case is typical. You should not expect to experience these results.
Research is ongoing into the role of exercise in cancer prevention and wellness during treatment. If you’d like to learn more, take a look at the following references cited in this article:
1. Irwin, M. L., Cartmel, B., Gross, C. P., Ercolano E., et al. (2015). Randomized exercise trial of aromatase inhibitor–induced arthralgia in breast cancer survivors. Journal of Clinical Oncology, 33, 1104–1111. doi: 10.1200/JCO.2014.57.1547
Abstract online: http://jco.ascopubs.org/content/early/2014/12/01/JCO.2014.57.1547.short?rss=1
2. Fournier, A., Dos Santos, G., Guillas, G., Bertsch, J., et al. (2014). Recent recreational physical activity and breast cancer risk in postmenopausal women in the E3N cohort. Cancer Epidemiology, Biomarkers & Prevention, 23, 1893–1902. doi: 10.1158/1055-9965.EPI-14-0150
Abstract online: http://cebp.aacrjournals.org/content/early/2014/07/31/1055-9965.EPI-14-0150.abstract
 
 

Beth,
 
I hope you and your father are adjusting to the news of the diagnosis.  I am a seasoned cancer survivor but the news of diagnosis still shocks me, partly because I know the nature of the disease but mostly because it drudges up unpleasant memories I'd rather forget.  At least you know the drill.  Suite up, lock and load, and proceed purposefully to engage the beast.  Keep us appraised of how he and you are doing.
 
Stay the course.
 
Tom

my most sincere apologies... not used to seeing that area of the world in the forums here! once the treatments start up the effects of cancer should lessen and improve her condition... will have to se about the coughing...I think that wil go away with treatment also.... hoping for the best with the trials !! Not sure also if you cang et asistance with medical treatment costs or not over there!! some compnies offer financial assistance to the patients... let us know what treatment and what kind of costs and we can see what links and info we can find for you!!!
 
 
found a couple of suggestions to try .. keep water on hand to lubricate the throat when whe feels a couging spell coming on... also halls LEmon cough drops or any kind of lemon cough rops might help.. the cough will go away when the treatment starts. if you can, also a mister to sleep near helps keep dry air out of the system at night. these are pain med free options for now so you do not have to deal with meds and prescriptions..

The US Food and Drug Administration granted accelerated approval to ceritinib (Zykadia) for the treatment of patients with metastatic ALK-positive non–small-cell lung cancer (NSCLC). About 2% to 7% percent of NSCLC patients have ALK-positive disease. -
See more at: http://www.cancernetwork.com/news/fda-a ... LIVmQ.dpuf

post deleted and for now Member reported and blocked from posting...

Stacy,
 
I'm not a radiologist but the impression suggests an inability to classify the discovered nodules as cancer or not.
 
A PET-CT appears to be the next test ordered.  Here is a explanation of what that test consists of and how it determines metastatic disease (cancer).  
 
http://www.lungevity.org/about-lung-cancer/lung-cancer-101/diagnosing-lung-cancer/imaging-tests
 
Stay the course.
 
Tom

Hope for me is knowing I'm not alone in this battle! I have the greatest support team ever! Never give up

Hello Debbie!  I am so sorry about your diagnosis but am glad you found all of us here.  I am not familiar with small cell lung cancer.  My husband had non-small cell.  However I am very familiar with the insurance companies and the work it takes to get them to help pay for needed tests and medications.  I too had Blue Cross of California and every time I turned around they were denying us.  My husband was prescribed Tarceva and we had to pay for it ourselves.  It was over $3,000 a month.  It's just not right!
 
It seems you are a very strong young woman and I am happy you have your husband and daughter near you.  
 
Please keep us updated and also read our other forums.  There are many survivors out there!  If you have questions......please ask away  ((hugs))

Hi Sam, 
It sounds like you have a great support team. That's fantastic! We are here for you too. How are you feeling? 
 
I want to share this video with you about someone who has a similar diagnosis 
 
LUNGevity also has the LifeLine service available to you as well. We can connect you with a mentor with a similar diagnosis for you or your caregiver to communicate with. Here is the link for more information: http://www.lungevity.org/support-survivorship/get-connected/lungevity-lifeline
 
Also, If you have any questions about navigating the message boards please feel free to send me a message. 

I love to communicate with different and interesting words. I think words are delicious and I think the right words can inspire others, especially over the internet. Some people may blame my love of words and catchy phrases on my past pee-wee cheer-leading experience (an elementary version of “Bring it On!”) or the fact that I was a reporter for my college paper (yes it was actual newsprint back then) or maybe it’s because I’m a mom to two really clever kids, who teach me new words and phrases everyday. For whatever reasons, I love words. I also love to make up words.

Making up words and phrases is my thing. When I’m having a bad day, things are “craptastic”. When something I’m counting on falls through, that’s a “poop-thing” to happen. When I’m having a great day things are “awe-MAZING” or “beautimous” and when I’m describing our annual HOPE Summit , it’s “HOPEtacular.”

I know it’s not the most professional language to use, but the patients and families I support see enough professionals on a daily basis. By the time they get to me, they are looking for patient navigation, emotional and practical support, a one on one real time connection, and hopefully at the very least, a smile. Those are things I can deliver on.

CRITICS AND PESSIMISTS

Recently I was cautioned by a fellow survivor over the use of some of my descriptive words. Survivor. Strength. Hope. Warrior.

I’ve read the handful of articles over the years who have said that words of “hope” and “strength” and “survivorship” don’t cure cancer and are just an added pressure placed onto patients. They want people like me to “get real” and not offer false hope.

I can truthfully say I’m the first person to “be” real and not offer false hope. I’ve held the hands of each of my parents as they took their last breaths and I’ve lost countless to lung cancer in my 13 years as a patient advocate in the lung cancer community. That’s as “real” as it gets, folks. While I realize the seriousness of what people impacted by lung cancer go through, as a cancer survivor myself I also believe that every day should be celebrated in some way.

Words like hope and strength, courage and fighter have been used to describe people impacted by cancer long before I ever became a patient advocate. The difference is I use these kinds of words to describe and inspire those with lung cancer.

HOPE IN RESEARCH

Historically, a lung cancer diagnosis was never thought of as “hopeful”. It has been described as a death sentence. There were rarely any “survivors” and the word “strong” wasn’t used to describe someone who had been diagnosed with the deadliest cancer killer and going through extremely harsh treatments.

While lung cancer still claims the lives of more people than any other cancer and still receives the least in funding dollars, there has been marked progress in the 12 years since my dad was diagnosed. The science is very encouraging and LUNGevity, the largest lung cancer nonprofit, funds more lung cancer research than anyone else. I’m seeing more people live longer with lung cancer and live with it as a chronic disease. I see an integrative and interactive medical community and collaborative treatment team. I see young researchers excited and interested in making an impact against this disease. I see a better quality of life for people diagnosed with lung cancer, clinical trials and many more treatment options today than 10 years ago. We have a very long way to go in our pursuit of making lung cancer a survivable disease at all stages of diagnosis, but there has been progress.

SURVIVORS DO EXIST

Patients feel stronger. They feel hopeful. I’m meeting more and more multi-year survivors. Through events like the HOPE Summit they feel empowered to make their survivorship the best it can be- whether that survivorship is just months long or many years long.

And that IS hopeful.

I don’t mean to negate the gravity of a lung cancer diagnosis when I use the word “hope”. I don’t ever mean to imply a positive attitude and some crafty words is all anyone needs to survive this disease.

What I do mean to do is inspire and encourage people with my words.

I use the stories of survivors to inspire people who are newly diagnosed so that they don’t feel isolated or alone. When I see a photo of a stage 4 survivor in active treatment, who has a multitude of side effects, walk on a treadmill or complete a cancer walk, the words I use to describe that patient are COURAGEOUS and LUNGevity STRONG.

No. No amount of cheerleading and none of these clever words or descriptions will cure lung cancer. But let me tell you what it can do.

Words can make you laugh or smile. They can inspire someone on the brink of despair. Words can refill lost hopefulness. They can offer emotional support to someone who otherwise may have no one. Words can educate someone enough to get a second opinion, to ask questions, speak to their doctors and empower them to advocate for themselves and improve their quality of life.

I think that’s HOPETASTIC.

HOPE is that someday soon life will return to normal!

I've been painting my toenails red every February 4th, the anniversary of my lung cancer diagnosis day.  Last February, I ran out of toes and my wife added hers to the mix.  If I can live, so can you.  Take hope from my experinece.

Living with Lung Cancer
Sherry Guarneri suffered a multitude of physical effects from her lung cancer treatments including hoarseness in her voice from the chemo, losing her balance, losing her hair, migraines, nausea, dizziness, suffering from anticipatory sickness, losing thirty lbs., thrush and the list goes on and on of the things that she lost; except for her sense of humor and her love for her family.
Sherry was diagnosed with stage IV Adenocarcinoma with metastasis to the brain, on February 9, 2013. She was an Emergency Room Technician at a local hospital and had hurt her back helping a patient. The pain in her cervical bones would not subside and finally an emergency room doctor encouraged her to have an MRI.
She was stunned by the diagnosis. Sherry was under forty-five with a 1 and a half year old and two older children and was thought to be in great health. How could this happen? She learned that lung cancer can happen to anyone with lungs, whether or not they had a smoking history.
She remembers feeling ashamed at first after her diagnosis. At first she cried, then she got angry at the prognosis she was given. Eventually, she became empowered.
“I wished there were people like me I could talk to. There wasn’t anyone like me; I was in great health; I was young. The Sociologist said the only support group was for breast cancer, which was clearly ‘a different cancer than mine.’ But I could call someone. That wasn’t a help. I needed more – a book, perhaps. So, I wrote my own. For people like me, who were young, never thought this would happen. It changed the course of my life.”
She wants to encourage other survivors to become advocates to help raise awareness about this disease.
“Write a book about your experience (I had SHuzie published regarding my lung cancer experience for free on Amazon and a portion of Amazon Smiles will be targeted for LUNGevity); write an article for your local newspaper; run marathons; share information about lung cancer via Facebook or run a lung cancer support group.” Sherry is also trying to get legislation passed to approve lung cancer awareness license plates in her state.
When asked what advice she would give to someone newly diagnosed, Sherry says to be an empowered and educated patient. Ask questions about your treatments and your care. Confide in your doctors and nurses and have a loved one advocate on your behalf.
“I want people to know that having any kind of cancer is not an automatic death sentence. The best thing about this cancer is I get to take care of me for a change. I get to literally slow down and smell the roses. I could die tomorrow; but so could my neighbor or my husband. We should appreciate the moment. I am LIVING with lung cancer.”
Feeling supported is also very important in the lung cancer journey. Sherry didn’t find a support group in her local community but she did find a national lung cancer community this May at the LUNGevity HOPE Summit in Washington DC.
“When I left the 2014 LUNGevity HOPE Summit my thought process had changed. I was happier and I was mesmerized. I felt accepted. I felt loved. The HOPE Summit is a room of my people. They are my people. I have never felt so understood by patients and my husband never felt so understood by caretakers of the LUNGevity HOPE Summit.”
For more information about LUNGevity, please visit www.lungevity.org

By Kenneth Lourie
 
One of my greatest fears (or regrets, if I am in fact the cause of my own decline) is that my own stubbornness, stupidity, “male blockheadedness” and/or refusal to believe/pay attention to signs, symptoms, indications and instructions/health advisories from my oncologist about my health will lead to my premature death. Not that a stage IV, non-small cell lung cancer diagnosee originally given a “13-month to two-year” prognosis still alive and writing – among other activities – five and a half years later should think it “premature” after so far outliving his original prognosis; nevertheless, having received this diagnosis at age 54 and a half has caused me to still characterize my death as potentially premature given the fact that both my parents lived well into their 80s. Their long life had led me to believe that I’d live just as long. Hearing what I heard from my oncologist back on February 27, 2009, at the initial Team Lourie meeting changed my thinking, however.
Yet here I sit, not exactly “ensconced” in velvet as George Costanza loved, but alive and reasonably well, sitting “in the catbird seat” (to quote the late, great, legendary Red Barber, radio voice of the Brooklyn Dodgers {1939 -1953} and the New York Yankees {1954-1966}.) “Sittin’ pretty,” in the “rocking chair” are similar phrases of a type of good fortune. And considering my original set of extremely unfavorable circumstances – terminal cancer, inoperable, incurable, “perhaps you ought to take that trip you always dreamed of;” – I’m about as fortunate as one could be: sitting, rocking, standing, anything, in or out of the catbird seat or any other seat for that matter. Lucky doesn’t begin to summarize my amazing good fortune. And as much as I’ve done to affect my circumstances: diet, supplements, minerals, vitamins, non-western alternatives, holistic ideas, I certainly don’t want to stop now. (I grade myself a “B” on the how-good-I’m-doing scale; those who know my history would give me a higher grade, however.) But as live on, I try to pay closer attention to what my body is telling me, given that it may have outlived its ability to absorb the many poisons and toxins it has absorbed over these past five years having been subjected to almost non-stop chemotherapy, every three weeks – save for a 12-month break when I was able to take two pills a day instead.
After all this time though, it’s still my nature to ignore, shrug off and even minimize some of what I feel and attribute it to age. (Believe me, it’s a lot easier than believing it’s the cancer.) I mean, I’m not getting any younger, and while the cancer is presumably impacting me in some way, I don’t want to take my above-average health for granted. Nor do I want to worry myself into an early grave, either. But if I’m not proactive and worried – and attentive to details, perhaps that innocence and hopefulness may very well be my undoing; even though I’m not ready to be undone. Regardless of what I do, or how I do it, sometimes I feel like my life is a done deal. And that’s what scares me – to be the victim of my own circumstances.
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Do you have fears you struggle with?
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“This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.” Mr. Lourie’s columns can be found at www.connectionnewspapers.com(link is external). (key word, Lourie) Read Kenneth Lourie’s 1st LUNGevity blog post & bio
 
http://lungevity.org/support-survivorship/get-connected/blog/scared-hopefully-not-to-death

Hi Joyce, 
Thank you for updating us. We are waiting with you. My favorite part of your post was, "I've faced some horrific nightmares, and have, at the most part, landed right side up!". I'm sure that describes many of us. Good luck with your blog, and we look forward to hearing form you soon. 

Kenneth Lourie Not exactly “like a frightened turtle” as “similed” on a long-ago Seinfeld episode by Jerry himself; this shrinkage is the good kind, the kind you hope a radiological oncologist characterizes when viewing your CT Scan (computed tomography). Specifically, the exact kind of scan I get every three months to assess and evaluate the tumors, and fluid, in my stage IV, non-small cell cancer-affected lungs. The actual scanning itself takes about 30 seconds of “breathe in,” “hold it,” and “breathe out” to determine if my life is on hold – in a good way – or in jeopardy (not a belated reference back to last week’s column). The week-long wait until we have our face-to-face appointment with my oncologist to learn the results is not as interminable as you might think. Over time, we have gotten used to the experience. After all, living with cancer means living, not dying, and adapting and compartmentalizing cancer’s effects – mentally, physically and spiritually; all keys to surviving and enduring the good, bad and ugly that daily can traumatize those of us “characterized as terminal” who frequent the Infusion Centers hoping for a miracle cure.
Since March, 2009, I’ve been treated with nearly non-stop chemotherapy, infused mostly, except for 12 months or so when I was able to take a targeted therapy pill at home and only had to show up at the Center for scans and doctor’s appointments. Six years ago almost, this process began; I can’t say it seems like yesterday, because there are yesterdays – due to the effect of chemotherapy – that I simply don’t remember (“chemo brain” is the accepted condition/characterization), but time flies when you’re having fun or rather, you’re still alive against all odds. And so it seems as if I still have a few tomorrows. Tomorrows that were hardly promised to me back at the original Team Lourie meeting in late February, 2009. Somehow, through a variety of fits and starts, I have survived: my DNA, my family history, my attitude, my pills, my supplements, my alkaline water, my diet and lifestyle changes, my above-average luck, whatever, however, I am still present and accounted for. And though “stable” is a radiologist’s/oncologist’s description I have come to hope and pray for and embrace over these past six years, “shrinkage” is a description “most welcome” as Hercule Poirot might say and one I rarely anticipated hearing – considering my stage IV circumstances.
But I can take it. Though I’m not cancer-free and certainly not in remission, I am doing reasonably well. I am, as a good friend says: “in pretty good shape for the shape I’m in.” The scan results are results with which I can live (Duh!) and so I intend to – until three months hence when we do this scan dance all over again. Granted, this cycle of gloom and doom and results-not-soon-enough is hardly ideal, but it is a living and a living I was not “prognosed” to have (“13 months to two years” was the original prognosis) when first diagnosed. I’m nowhere near home free; I’m still in for the fight of my life – for my life, but for the moment, at least, for this quarter, due to the shrinkage, I can take a bit of a break, which if you want to know the truth, I can certainly use.
http://www.lungevity.org/support-survivorship/get-connected/blog/shrinkage
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“This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.” Mr. Lourie’s columns can be found at www.connectionnewspapers.com(link is external). (key word, Lourie) Read Kenneth Lourie’s 1st LUNGevity blog post & bio.