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, 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.

Today I received a wonderful email from Charlene Kaforey. Some of you have followed along with her story about her own fight with mesothelioma, which was published here in March and April. For those that are unfamiliar, Charlene, who just turned 49, was diagnosed with mesothelioma in June 2007.

With a stage III diagnosis, she underwent chemotherapy treatments from October to December of that year, and then, faced with the prospect of a pleurectomy or pneumonectomy, which would remove part or all of the affected lung, decided to try alternative medicine.

Charlene went to the ITL Alternative Cancer Treatment Clinic in Freeport, Grand Bahamas, in January 2008, where she underwent an 8-week treatment called Immuno-Augmentation Therapy (IAT). Upon returning home, she administers her own vaccines several times a day, and has been continuing a twice-daily intravenous vitamin C program with the help of a nurse friend.

She celebrated her birthday Sunday, then on Monday went for her first CT scan since beginning her alternative treatment. Charlene reports, “There was overall improvement in my scan results!! The tumor was half of what it was previously, the pleural thickening was reduced, fluid is reduced and the pleural effusion is gone. I am thrilled, and stunned. Of course, I’m still guardedly optimistic, since I do still have cancer and the results could change at any time. But this, for now, this is the best birthday present I could have gotten!”

Alternative therapies like IAT are not authorized by the American Medical Association, and there is still a lot of skepticism and caution surrounding them. Generally, medical insurance does not cover alternative medical treatments like IAT.

Treatments that are not considered conventional medicine, but that are undertaken along with traditional medical therapies, like chemotherapy, radiation and surgery, are called complementary. Treatments used in place of conventional medicine, like the IAT Charlene is undergoing, are called alternative medicine.

IAT, along with other complementary and alternative medicine (CAM) programs, are being studied by the U.S. Department of Health and Human Services, the Food and Drug Administration (FDA) and the National Center for Complementary and Alternative Medicine (NCCAM), which operates under the Department of Health and Human Services.

Patients considering complementary or alternative treatments are encouraged to thoroughly research possible risks, benefits, and scientific evidence, and to discuss alternatives with their physician.

For more information, visit the NCCAM online, in the “health” section under “be an informed consumer.” They have information on topics including what to do when considering using CAM, how to select a CAM practitioner, and paying for CAM treatment.

I will be exploring CAMs in the coming weeks, and hope to talk to physicians and alternative and complementary treatment doctors and specialists about these programs, as well as patients like Charlene who are using them. If you’ve had an experience with a CAM, leave a comment or email me and share your experience.

I am thrilled for Charlene! Happy Birthday!!

Ok, it’s out there. I said it. Death. It’s not a subject that I go into with most of the people I talk to about mesothelioma. Even if we acknowledge that mesothelioma is diagnosed as a terminal disease, most of my conversations are about treatment options, support groups, awareness, and, ultimately, hope.

A couple of days ago I wrote about the closest topic I’ve seen along these lines, which still involved ways to find a silver lining in the struggle. Obviously, it’s a very necessary part of such a diagnosis. But it’s still about hope.

But today I came across an interesting essay, penned by Monica Sanford, a graduate student at the University of Nebraska-Lincoln, that is forcing me to look at another reality of mesothelioma. Its title, “Inevitability of death leads to freer living,” was immediately arresting. The author jumped right in with, “I thought I should write about death.” She went on to share that she has recently lost three people very close to her in fairly rapid succession - a paternal grandmother, a maternal great-grandmother, and her dear friend, Marilyn. Marilyn died of peritoneal mesothelioma at age 47.

As she ponders the very different lives and deaths of these people she loved, Monica wonders at a common thread - all knew they were nearing death, two as a result of illness, the other just sensing her time was nearing an end, even sharing with her great-granddaughter just a month before her death that she had walked with God, who showed her a waiting heaven.

That’s a truly unique aspect of this diagnosis. The knowledge, the clarity, the preparation for death. Everyone knows they will one day die, of course, but that day is always a long way off. Illness of this kind brings it into sharp relief.

In the post I wrote a couple days ago about silver linings, most people said the one thing they could credit their disease for was giving them a sense of the value of their time on earth. That knowing their illness was diagnosed as terminal gave them often times a will to fight harder and stay longer, because they saw with new eyes all the things they really wanted before they would be ready to go.

There’s a saying, “live each day as if it was your last.” But in the everyday hustle and bustle, it’s so hard to keep that in mind.

Monica’s essay reflects on faith, traditional Christian faith like that of her great grandmother, as well as her own, different, Buddhist perspective, and observes the different ways that her family members mourn, or celebrate, or deny at a loved one’s passing.

In the end, she finds that, for her, “The one thing I have that helps me cope with death in my life is not faith or family or hope. It is acceptance. Death is. Just like life is. Neither is good nor bad - they just are.”

But still, it hurts to let go.

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.

I recently came across a blog titled Mesothelioma and Me, written by a really neat woman in the United Kingdom, Debbie Brewer. The blog is a record of her thoughts, feelings and experiences since being diagnosed with mesothelioma in November 2006.

Like Charlene, who shared her story with us recently, Debbie is a young woman - only 49 years old. It is suspected that she contracted mesothelioma through contact with asbestos her father brought home on his clothing. She says he was a lagger with the Ministry of Defense and would often scrape asbestos from pipes.

Reading Debbie’s blog - she posts regular diary entries - is by turn heartbreaking and funny (she has named her tumor “Theo,” and tells him not to grow), and inspiring, and can make you really angry, along with her, as she rails against her illness and fights for awareness.

She mixes stories about her treatments with accounts of daily family life, vacations with her kids, changes at work, experiments with her diet, and her growing role as an advocate for mesothelioma in the UK.

Debbie’s site is a great way to learn about the real people behind mesothelioma. Visit and get to know her. I’m glad I did!

Probably the most important mission of myMeso.org is to give you – people affected by mesothelioma, other asbestos-related diseases, and lung cancer – a place to tell your story. Whether you are personally struggling with the disease, or are helping a loved one or friend face this diagnosis, we want to provide a forum where you can share what you are going through.

To help you do this, and to help other visitors to myMeso.org find your story, we’ve added a new Meso Map feature. The Map is interactive, and will have markers showing where different people affected by mesothelioma, asbestos disease or lung cancer are located in the United States or around the world. Click on any marker on the map to read their personal story.

On the Map page, you can also access a form that makes it easy for you to submit your own story. You can share as little or as much personal information as is comfortable for you.

The Map can be easily found on the myMeso.org home page, at the top right - just look for the map with the words “Help Raise Awareness.” Or, visit this page directly by copying the link: http://www.mymeso.org/mesothelioma-stories-share-your-story and pasting it into your web browser.

Personal stories are SO important.

Telling your story may give you the outlet you need, to express the frustrations, joy, fear, successes, and anger - the whole range of emotions you experience.

Your story may provide guidance, comfort and a sense of community for people who are facing similar challenges. You may provide just the information about new clinical trials, about your experience with different treatment options, or an outstanding support group that is just what someone else is looking for.

Most of all, sharing your story will help us to put a human face on mesothelioma, which is critical to sparking action to fund research and find a cure.

Whatever you want to say, we’re ready to listen.

So please, visit our Meso Map page to read stories from mesothelioma and lung cancer survivors, and share your story!

About 5 minutes into Linda Garmon’s documentary about cancer, titled The Truth About Cancer, which aired last night on PBS on Alabama Public Television, I started crying. I was a mess through most of it. Garmon films her husband, Larry D’Onofrio, who is diagnosed with mesothelioma, and records his journey. Within two years, he has died.

About six years after his death, Garmon revisits some of the cancer centers where Larry was treated, and talks to doctors, patients and family members of those suffering from a variety of cancers - pancreatic, lung, breast, prostate.

The documentary explores the complicated maze of cancer treatment, which is so widely varied partly due to the many variations cancer takes within the human body as it mutates genes. It also looks at how cancer affects people’s relationships, with the person battling cancer oftentimes also feeling the pressure to “beat it,” to “win” over cancer, a feeling of pressure that it’s somehow up to them to get well.

Garmon touches on the issue - why are people still dying of cancer? She shows news footage of President Richard Nixon declaring war on cancer. And here we are still fighting.

Larry D’Onofrio built his family’s home, and worked on other construction projects. It is suspected he contracted mesothelioma as a result of asbestos exposure in that work. Garmon wonders, “why him?” when others who worked alongside him are healthy today.

I write about mesothelioma every day because it’s my job. But I’m touched by the people I meet who share their stories. I’m amazed by the patients who agree to clinical trials even when they understand that there probably won’t be a miracle cure for them, but because they understand that by doing so they might help someone after them.

And I’m touched by the people affected by mesothelioma who work for awareness. To reach out from their place of pain to try to bring the issue to light - that’s strength almost unimaginable. Thank you, Linda, for having the strength to share your story, the story of you and Larry and the hardest battle you ever had to fight.

PBS will air the documentary several more times in the coming weeks. If you missed it last night, I urge you to check your local listings and make a point to see it. It’s powerful, and it’s a message more people need to hear.

The ITL Experience

While undergoing chemotherapy to treat her mesothelioma, Charlene Kaforey had time to explore her options. As a Stage III patient, she was worried about her chances for quality of life or even long-term survival if she underwent surgery.

During this time, she found information about the ITL Alternative Cancer Treatment Clinic, located in Freeport, Grand Bahama Island. After talking to patients who reported success, she decided to try this unusual route for her own treatment.

She made her first visit to the clinic January 7, 2008. Mesothelioma patients like Charlene initially complete an 8-week course of treatment, which includes daily blood tests, several injections daily of a serum designed to boost the body’s immune system so that it can fight the cancer, and intravenous vitamin C plus two shots of cancer vaccines, twice per week, she says.

The blood work is to monitor the body for responsiveness to the treatment in order to fine tune it to the patient and set up an ongoing course that is administered by the patients themselves after leaving the clinic, Charlene says. Treatment at ITL is a process that lasts for the rest of your life, she explains.

Now back home in New York, she administers her own shots eight to 12 times per day. She also is continuing the intravenous vitamin C at home, although she says that is optional. She also needed to complete 5 of the 12 weeks of the cancer vaccines at home. Patients return to the clinic every four months for two weeks at a time for re-evaluation and adjustments to their serum regimen. Charlene is scheduled to return in June.

“What they tell you at ITL is that it will not necessarily make the cancer you have go away, but will hopefully prevent it from spreading any further,” Charlene said. “So if they can do that, and give me six years, that would be wonderful. That would be six quality years instead of two miserable years.”

Patients considering ITL need to know that because the facility is considered alternative medicine, it is not accredited by the American Medical Association or other governing boards of that type, and some insurance companies will not cover the cost of treatments.

ITL requires payment at time of services, which, according to the clinic’s web site, for Immuno Augmentive Therapy (IAT) of the kind Charlene receives, run around $7,500 for the first four weeks and about $700 per week thereafter. That cost does not include the vitamin C IV’s or the vaccines. Patients also must cover the costs to travel to the facility, and for accommodations during their eight weeks of treatment.

“Everyone has had different experiences [with insurance],” Charlene said. “I submitted my bills to my insurance company and I’ll just see what they do. Some people get partial payment, some insurance pays nothing,” she says. “But what’s your life worth to you?”

In addition to the financial challenge, there also is the issue of travel and time away from family. Charlene was lucky; she had different family members with her throughout her 8-week stay. They became as much a part of daily clinic life as she did.

“Seeking treatment at the clinic definitely involves family decisions. The cost is a major consideration and so is the time away from home. While the cost is much less than the approximately $200,000 price tag involved with the surgery/chemo/radiation regime, insurance will pay for those debilitating treatments. Plus, knowing you may have limited time remaining, do you want to leave family and friends for 2 months,” Charlene said. “It is a really individual decision. You have to look realistically at what your own choices are and what you need to do for yourself and your family. We viewed this as an investment of time and financial resources for the long term. Two months away is worth it if I get 4-6 more years with my family.”

A big part of Charlene’s experience at ITL was meeting other mesothelioma patients, as well as people with other types of cancer, and sharing stories. Her last week at the clinic, she said there were seven mesothelioma patients there, all around the same age – mostly women in their 40s and 50s, with whom she felt a real connection.

“You talk to real-life people who are there, who are surviving and living quality lives after their doctors had told them there was no hope. The stories are so different and so amazing, and yet you share so much because you’re all going through this. It gives you hope to meet patients who have survived 28, 20 ,12 or even 4 years after being given a death sentence,” Charlene said.

That connection with other patients has led Charlene to explore forming an outreach and support group where she lives, in Rochester, New York, where she plans to work for fund raising for a cure and to raise awareness of mesothelioma.

Alternative medicine is controversial. Its results often do not have a long history of documentation. People who choose this route understand that they are stepping out into largely uncharted waters.

Charlene is happy to share her story with others who are facing mesothelioma in their own lives, either as a patient or as a family member of someone with meso.

If you would like to talk with Charlene, please email wendi@mymeso.org and I will be happy to forward your information to her.

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