I received an email a few days ago from Nancy Wagner, in Jacksonville, Florida. She found our site through the Lung Cancer Alliance message and journal sites, over at Inspire.com. She wanted some mesothelioma awareness materials, like our awareness bracelets, to share with people around her, in memory of her father, Bill, who passed away with mesothelioma in 2004. Nancy was kind enough to share her Dad’s story with us:

My Dad, Bill [Hackett], was a master mechanic and boilermaker from the time he was 25 until he retired on disability at age 61. During this time he dismantled and rebuilt or built boilers to run some of the company’s largest factories and businesses. He started out at Maryland Ship Building and Dry Dock and then went on to become an independent contractor.

Over the years he was exposed to asbestos hundreds of times, not knowing back then that it would be what eventually claimed his life.

From the time he was retired due to this disability until his death in 2004, he suffered tremendously with breathing disorders from mesothelioma. He faced several surgeries and had to have fluid removed from his body numerous times. There were days he could hardly breathe at all, but he kept going. How I will never know.

Because he had been self employed, there was no insurance because he could not afford it. And social security did not pay very much on a monthly basis. Being a decorated WW II veteran, he was entitled to some treatment through the Veterans Administration.

My father was a very independent man and refused to give up or give in to anything that stopped him from doing what he wanted and going where he wanted. And he refused to be a burden on any one, especially his daughters. Until the week he died he continued to serve as Chaplain of the American Legion Post and made arrangements for former veterans’ funerals and assisted their families.

But he never told us about the cancer. He went to all of his chemo appointments and never told us anything. It wasn’t until after his death and the Death Certificate was issued did we know this is what took him. He died alone, 2 weeks before Christmas, in the house where we grew up.

My dad was truly a great man. I believe the reason he never told any of us was because we lost our Mom to cancer when she was 34 and he was 36 and he didn’t want us to have to face losing him to cancer, even though it was a different kind.

Almost 2 years after his death, I found out that I have stage IV lung cancer.

Cancer in any form is life threatening. The more people are aware of the signs and symptoms of cancer, the better off they will be. Annual checkups are vital. Don’t wait until it’s too late. Cancer caught early can be cured. The later the stage, the more intense the treatments and the less chance for remission.

I’d just like to thank Nancy for sharing her Dad’s personal story with us, and for helping to raise awareness and urge for early detection and research. God bless you.

Golf Digest magazine announced John Atkinson, a stage IV lung cancer survivor, has been selected to play as part of a celebrity foursome at Torrey Pines, the same course played by the pros at this year’s U.S. Open. Atkinson will play with NBC Today Show host Matt Lauer, Dallas Cowboys quarterback Tony Romo, and recording artist Justin Timberlake. The event will be broadcast on NBC Sports on Sunday, June 15, from 2-3 p.m. (ET), in the hour leading into NBC’s broadcast of the final round.

Atkinson was selected from more than 56,000 entries, voted on by the magazine’s readers. Never a smoker, he was diagnosed with stage IV lung cancer a little more than a year ago at age 38. He hopes to use the golf event as an opportunity to raise awareness for lung cancer funding and research.

In a press release from the Lung Cancer Alliance, which urged its members and supporters to vote for Atkinson, he is quoted as saying, “The game of golf to me is living. I am going out there to enjoy the golf course, to play a great round and to give hope to those who are faced with life threatening illnesses. If I can beat America’s deadliest cancer, then I can definitely break 100 [at Torrey Pines]. It’s going to be a great day, an emotional day, and I can’t wait.”

Lung cancer is the nation’s leading cancer killer, taking more lives than breast, prostate and colon cancers combined.

To enter the contest, Atkinson submitted a 100-word essay describing why he could break 100 at Torrey Pines. Once being chosen as a finalist, he received more than 48,000 of the 117,000 votes cast in the first U.S. Open Contest, conducted by Golf Digest, the United States Golf Association, and NBC Sports. You can watch a video interview with Atkinson and read other features about the foursome at Golf Digest online.

Amy Peterson of the Lung Cancer Alliance posted to the LCA message board / support group on Inspire.com yesterday to let cancer survivors know about a new program that aims to provide hope and cheer during a difficult time. The LCA is partnering with Compassionate Communications, a company dedicated to connecting people in need of support and encouragement with people who want to reach out to them.

Compassionate Communications will operate a web site, which will be launched sometime this month, that will feature photos and information about people struggling with cancer, including mesothelioma, and other life-threatening illnesses. Visitors to the site can view profiles, and if they choose to register (for a fee of $25), they will receive five Hallmark greeting cards with pre-paid postage, to send to patients to encourage them, and other support materials. Twenty-five percent of the registration fee will benefit patient-serving organizations.

There is no charge for a patient to register his or her profile. The program operates in cooperation with Hallmark Business Expressions (a subsidiary of Hallmark Cards, Inc.).

Patients may download an “opt-in” registration form and waiver directly from the web site, or call 888-337-6416. The waiver must be completed and returned by mail or fax to Compassionate Communications, which will then provide participants with an account so they can set up their personal profile on the site. There is a place on the waiver form for patients to designate the patient-assistance organization they would like card-sender registration fees to benefit.

You may also get more information or ask questions by emailing Amy at the Lung Cancer Alliance at apearson@lungcanceralliance.org.

A while ago, I posted a series of stories from an interview with Rear Adm. Phil Coady (ret.) the Chairman of the Board of the Lung Cancer Alliance. In the interview, he talked about pulmonary fibrosis. Since that time, I’ve had several people wondering if pulmonary fibrosis is connected to asbestos or mesothelioma.

The American Lung Association explains that pulmonary fibrosis is also called interstitial pulmonary fibrosis or interstitial lung disease (ILD). These three terms are often used to describe the same condition.

ILD is not lung cancer; it is a chronic lung disorder. ILD involves a thickening of the lung tissue, which becomes stiff and makes breathing more difficult and demanding. ILD can take many forms, and may progress slowly or rapidly, depending on the individual and the nature of the ILD.

The Lung Association reports that the common link in ILD is that it begins with inflammation, which may affect different parts of the lung. Inflammation may lead to permanent scarring of the lung tissue, which is often called pulmonary fibrosis. The interstitum is the tissue between the lung’s air sacs. Scarring begins in this area, which lends the condition its formal name.

Known causes of pulmonary fibrosis include occupational and environmental exposures, including exposure to asbestos, which can damage the lungs and cause scarring (fibrosis).

Other possible causes include a disease called Sarcoidosis, side effects of medication, radiation, connective tissue or collagen diseases, or genetic predisposition, which is not as common. The familial form of the disease is often called familial idiopathic (of unknown origin) pulmonary fibrosis.

When I spoke with Admiral Coady, he mentioned that he did have a family history of pulmonary fibrosis. He knew that his family history, combined with his exposure to asbestos while serving in the Navy, put him at greater risk for the disease, and was vigilant about early screening. He did eventually develop the condition. Sadly, he also later developed lung cancer, although not mesothelioma.

Some ILD improves with medication if treated when inflammation occurs, and some people also need oxygen therapy as part of their treatment.

I hope this answers the questions and clears up any confusion. While pulmonary fibrosis is not related to mesothelioma, it could be considered an asbestos-related disease.

As part of my work to raise awareness about mesothelioma, other asbestos related diseases and lung cancer, I talk to a lot of people facing these diagnoses. I also read a lot of message boards and forums that deal with these issues and provide a sounding board for patients, families, caregivers and even medical professionals working in this field.

A couple of the best forums, in my opinion, are the Lung Cancer Alliance Survivors Support Community, and the many forums sponsored by the LUNGevity Foundation. Recently, both groups have been tackling a difficult topic – how to find joy in daily living when faced with a diagnosis that is often grim.

They ask, “what is the positive side of lung cancer? IS there a positive side?”

Many people credit the forums themselves as a positive, providing a network of new friends, and helping them to find a place where they can be uplifted by other people’s stories of success. They say forums like these help them find relief by sharing their own fears and finding answers to their questions, and by helping them learn they are not alone.

Many echo each other in their feeling that their experience with cancer has taught them to value each day, and not to wait for tomorrow to accomplish goals. That surely would be a blessing for all of us to learn, wouldn’t it?

Some lung cancer survivors handle their challenges with humor. Yesterday I mentioned Debbie, who lives in the UK, who started her own web site about her battle with mesothelioma, and who nicknamed her tumor “Theo,” and provides reports on his condition and sometimes addresses him personally in her blog.

A poster on the LUNGevity forum recently found the humor in a YouTube video, in which two teenage girls spoof a Justin Timberlake rap song, “My Love,” with their own version, “My Lung,” in which they express their affection for their lung health. It seems they made the video as part of a high school health project.

On a similar track, a friend who knows I write about lung cancer sent me a link to an odd little web site called “I Heart Guts,” which features, among other things, plush toys and t-shirts depicting happy, smiling internal organs, including a shirt bearing the slogan “I Lung You.”

What about you? If you have been diagnosed with mesothelioma or another asbestos disease or lung cancer, or if you are helping a family member or friend, how do you find peace and inspiration? What helps you?

One of the things I’d like for this site to do is to provide a resource for people struggling with meso, and a place to network and share ideas. Post your story to the Meso Map, or leave a comment to let me know what inspires you. Tell me if there’s another forum you like, or a web site with good information that I should add to my page’s blog roll.

This site is here for you.

Meso victims, unite! The Lung Cancer Alliance recently sent an Open Letter to presidential candidate Hillary Clinton following remarks she made pledging funding for breast cancer, asking her to also prioritize funding for lung cancer.

Following is the text of the open letter, along with information about how to contact Clinton’s office. The LCA is urging everyone affected by lung cancer, including mesothelioma, to join their voices in this effort to finally secure the funding that lung cancer has long deserved. It is time to make this a national priority!

An Open Letter to Presidential Candidate Hillary Clinton

April 9, 2008

Yesterday you announced what you would do for breast cancer should you be elected president. When will you announce what you would do for lung cancer?

The $300 million plan you unveiled yesterday to find a cure for breast cancer should be at least doubled for lung cancer since it is killing nearly twice as many women each year as breast cancer. Most women do not even know this.

You do, Senator Clinton, and you specifically cited that fact as part of the justification for Senate Resolution 87, which you co-sponsored and supported and which was passed August 2, 2007. The resolution was a strongly worded policy statement by the Senate calling on the President to declare lung cancer a public health priority and to implement a comprehensive interagency program to reduce lung cancer mortality by 50% by 2015.

The Resolution contains a page and a half of the grim statistics justifying the demand for priority action and specifically notes the enormous under funding of lung cancer research, which receives only seven cents for every federal dollar spent on breast cancer.

Of course we would like to see a cure for breast cancer as we would for all cancers. Thanks to the billions in federal dollars alone that have been invested in breast cancer research and early detection, the 5-year survival rate for breast cancer is now 88%.

Having been massively under-funded, as the resolution notes, lung cancer’s 5-year survival rate is still only 15%. That will no longer be tolerated.

We are not asking for a cure at this point. Just a 50% reduction in the mortality rate for lung cancer, the most lethal cancer, which is now killing more men and women each year than breast, prostate, colon, kidney, melanoma and liver cancers combined.

One in five women being diagnosed with lung cancer now have never smoked at all and they seem to be getting diagnosed younger. Why aren’t women demanding more research? Because they do not know the facts.

You spell out the facts so eloquently in S. Res. 87 and you lay out in the resolution a comprehensive program for lung cancer that is actually quite similar to the one you proposed yesterday for breast cancer.

When will you announce your comprehensive plan for lung cancer? We thank you and look forward to hearing from you on behalf of all those with and at risk for lung cancer, their families, caregivers and friends.

Lung Cancer Alliance

To contact Clinton’s office:

Hillary Clinton General Campaign Headquarters

4420 North Fairfax Drive

Arlington, VA 22203

Ph: 703.469.2008

Fax: 703.962.8600

comments@hillaryclinton.com

press@hillaryclinton.com

Personal assistance to those with lung cancer

In addition to its lobbying efforts, the other main focus of the Lung Cancer Alliance is to provide care and counseling to patients diagnosed with lung cancer. A big part of this is to help patients find clinical trials for new medications.

“Right now, there are only about three, maybe four, drugs that are approved for treating lung cancer,” explains Rear Admiral Phil Coady, U.S. Navy (Ret.), chairman of the board for the LCA. “Once you get past that, you’re on your own and there’s nothing else.”

The next step can be participation in a clinical trial testing new cancer-fighting drugs. The LCA has a screening process to help patients find a trial that fits their situation.

“It’s bewildering trying to figure out what’s a good trial for you and what you’re eligible for,” Coady said. “We ask patients questions about their progression, what they are willing to do, where they live, lots of other questions, and then we can process that information against a database of ongoing clinical trials and match a patient to where they are a good fit. It gives them another avenue to try something else, to keep hoping.”

They also provide patient support services like the Phone Buddy program, a peer-to-peer support network for people with lung cancer and their family members and caregivers, as well as an online forum where lung cancer survivors and their families can network with other people who are struggling with the illness.

Finally, LCA strives simply to raise awareness about lung cancer, and to promote early screening.

“Our goal is to save lives. Simple as that,” Coady said.

For more information about LCA and its programs, visit www.lungcanceralliance.org or call the Lung Cancer Information Line at 800-298-2436. Tap into the LCA Survivors Community online at http://lungcancer.clinicahealth.com. Call the Phone Buddy program at 800-298-2436.

The stigma of lung cancer

Rear Admiral Phil Coady, U.S. Navy (Ret.), now serving as chairman of the board for the Lung Cancer Alliance, was never a smoker, and was surprised at the reactions of friends, family and co-workers when he told them he had lung cancer. They said he was brave for sharing the true nature of his illness.

“With lung cancer, there’s a real stigma attached to it. People don’t mention it in obituaries. There’s this perception that people with lung cancer brought it on themselves. I was never a smoker. Twenty percent of the women with lung cancer who are coming down with it every year have never been smokers.”

The stigma tends to inhibit discussion of lung cancer, Coady says, which impacts funding for research. If nobody is talking about it, the awareness just isn’t there, and it is treated as out of sight, out of mind. Meanwhile, lung cancer kills more people each year than breast, colon and prostate cancer combined. Ninety-two percent of people diagnosed with lung cancer die from the disease.

“I believe intently that the solution to lung cancer is making people aware that it is a public health problem and developing a public policy program. National priorities have not been adjusted to make this a national priority,” Coady says. “LCA’s first mission is to get before Congress to make this a national priority. Then, we go back to Congress and put some dollars behind it.

“The numbers we have all stated about the number of people who have died from lung cancer are compelling. It’s a half a million people every three years. There is no other cancer that comes close. But there’s almost no public funding.”

One current lobbying effort involves approaching state legislatures to gather support for an initiative that would donate 1 percent of tobacco tax revenue or tobacco liability settlements collected by state government for lung cancer research.

“Right now we’re using that money to build roads, schools, other infrastructure, but nothing to do with the cancer,” Coady said.

Next: Personal help for those with lung cancer

Operating under the tagline “No More Excuses. No More Lung Cancer,” the Lung Cancer Alliance (LCA), a relatively new organization based in Washington, D.C., is working to remove the sigma from lung cancer and secure significant funding to fight the deadliest form of cancer.

Chairman Coady’s story

Leading the charge for the organization is Rear Admiral Phil Coady, U.S. Navy (Ret.), who serves as chairman of the board of directors. A career Navy officer, Coady was diagnosed with non-small cell lung cancer in early 2005. He underwent surgery to remove the affected lobe and went through chemotherapy. In late 2005, the cancer recurred with metasteses to his bones. Chemotherapy has been successful in slowing the advance of the cancer for the past two years, and Coady is fighting for other lung cancer survivors.

Although Coady doesn’t suffer from mesothelioma, he is very much aware of the risks posed by asbestos. His work during his time in the Navy very often put him in contact with the substance, he said, and seven of his friends died from mesothelioma since his retirement.

In addition, for 10 years following his retirement, Coady worked as president of the Navy Mutual Aid Association, a non-profit veterans benefit group and life insurance service, where he saw what he thought was a disproportionate amount of lung cancer deaths.

He notes that shipboard service in the Navy, particularly during the years he served, routinely involved exposure to asbestos, second hand smoke and other possible carcinogens. Veterans also were at risk from exposure to chemicals such as Agent Orange, sulfur mustard gas, and other battlefield combustion products.

“I had heavy exposure to asbestos in the Navy,” he says. “I spent a lot of my time as an engineer on ships. In the 1960s there were no precautions about asbestos that I recall at all. We tore out asbestos with hand tools. A dust mask might have been our most aggressive protection.”

With a family history of pulmonary fibrosis, a chronic scarring of the lungs, Coady always had his asbestos exposure in the back of his mind in relation to his health, and had regular CT scans to check for the disease, which he did eventually develop as a result of his exposure. Then, in 2005, the scans also showed lung cancer.

“Ironically, it was really my concern about asbestos that probably saved my life,” Coady said, crediting his regular screenings with catching his cancer early.

Next: The stigma of lung cancer

The Lung Cancer Alliance, in cooperation with The Wellness Community, has developed some great information to help people facing a diagnosis of lung cancer to feel and act empowered about their future.

The Lung Cancer Alliance is the only national non-profit organization dedicated to providing support and advocacy to lung cancer patients, surviors, families, caregiver and those at risk for the disease.

The Patient Active Concept helps people with lung cancer to approach the choices they make with their health care team with a mind set of active participation, helping them to regain a sense of control in what can be an overwhelming situation.

Here are 10 things The Wellness Community recommends:

• Stay in the moment. Focus on resolving today’s problems and not projecting scenarios of an uncertain future.
• Help others understand what you need. Don’t be afraid to speak up. Be open and honest about how you want others to treat you.
• Do what you enjoy! If you feel well enough, participate in activities you enjoyed before your diagnosis.
• Retain as much control of your life as is reasonable. It might help to make a list of areas you feel you’ve lost control and talk with those who care about you to regain a feeling of comfort in this area.
• Seek relaxation. A calm, controlled physical state may enhance your immune system.
• Steer clear of negative words in relation to the illness. Use hopeful words like “survivor” instead of “victim.”
• Acknowledge your feelings. Find a constructive way to express your emotions, don’t keep them bottled up.
• Become partners with your doctor. Open communication, ask questions and share honest information.
• Spend time with other cancer survivors. In person, on line, or on the phone.
• You can hope for many things. Keep hope for recovery – physical, spiritual, emotional.

These tips are just a tiny bit of the information included in the guide Frankly Speaking about Lung Cancer, available from the Lung Cancer Alliance and The Wellness Community. Contact the Lung Cancer Alliance online, or call 800-298-2436.