The conference will feature prominent physicians, scientists, safety and health directors, as well as survivors, who will present current information about the status of asbestos in the U.S. and worldwide. Discussion will include facts on exposure, asbestos-related diseases and how to prevent them, and where to turn for help.

In addition to the main event on Saturday, there will be an evening reception on Friday, March 27, featuring musician Jordan Zevon, whose father, legendary singer-songwriter Warren Zevon, died of mesothelioma in 2003; and a Unity and Hope Remembrance Brunch on Sunday, March 29.

Five individuals will be honored for their outstanding work in raising awareness about asbestos exposure: U.S. Senator Barbara Boxer for her work to ban asbestos in the U.S.;  Margaret Seminario, AFL/CIO, for her efforts to unite, educate and empower asbestos victims and workers; Dr. Stephen Levin, MD, for his research into the social and medical impact of asbestos; and Pralhad Malvadkar and Raghunath Manwar for their work with victims of asbestos exposure in India and worldwide.

The conference is presented by ADAO, the Barbara Ann Karmanos Cancer Institute and the International Ban Asbestos Secretariat.

For more information or registration, visit ADAO online.

SOURCE: myMeso › Asbestos Awareness Conference set for March 28

Based on the idea of “living your childhood dreams,” the lecture is a reflection on what would be most important to a person if they had to choose the last talk of their life – the things they would want to share with others.

Dr. Pausch passed away today, at the age of 47. He is survived by his wife, Jai, and their three children, Dylan, Logan and Chloe; his mother, Virginia Pausch of Columbia, Md.; and a sister, Tamara Mason of Lynchburg, Va.

Please take the time to watch this video. I hope that it inspires you to live your dreams.

SOURCE: myMeso › ‘Last Lecture’ professer has passed away

It is hoped the new treatment will replace or delay the need for the standard treatment in these cases, a pleural pneumonectomy, which involves removal of the lung and which can be extremely debilitating to patients.

According to a press release from the medical center, Dr. Robert Taub, the study’s principal investigator, director of the Mesothelioma Center at NewYork-Presbyterian/Columbia and professor of clinical medicine at Columbia University College of Physicians and Surgeons, says, “Current surgical and chemotherapy treatments of patients with malignant pleural mesothelioma are unsatisfactory, and have not been shown to significantly prolong survival. In this study, we will investigate whether a combination of chemotherapy and radiation targeted directly at the lung’s lining can improve outcomes while avoiding surgery. In addition, this approach has shown to have minimal toxic side effects compared to systemic chemotherapy.”

The Mesothelioma Center is the only one nationwide that is offering this experimental therapy to treat pleural mesothelioma.

The study is being conducted at the Mesothelioma Center within the Herbert Irving Comprehensive Cancer Center at NewYork-Presbyterian Hospital and Columbia University Medical Center. According to the release, participating patients will receive several rounds of targeted chemotherapy using the drugs cisplatin and doxorubicin via surgically implanted catheters. Some patients will be randomly selected to receive additional systemic (intravenous) chemotherapy using the drugs cisplatin and pemetrexed. All patients will receive targeted radiotherapy using the P-32 radioisotope.

Patients may elect to receive additional surgical treatment, including removal of the affected lung lining or lung. Subsequently, patients will be offered outpatient systemic chemotherapy with cisplatin and pemetrexed.

For more information, visit www.hiccc.columbia.edu.

SOURCE: myMeso › Clinical trial for mesothelioma at NY hospital

During those two years, Leroy battled his brain tumor, and then cancer that attacked his spine. Now, his latest scan shows his cancer has all but taken over his body, affecting his brain, liver, lungs and bones. He’s managing his pain, realizing his time is short.

Leroy never really expected to still be writing the blog two years after his initial diagnosis, and yet the time is still too short. In a recent post, he wonders if there is a lesson in this unique struggle. He asks, “Have I missed something? A lesson that the disease was trying to pass on?”

In the years that he’s been writing the blog, Leroy has inspired so many people who are waging their own battles with cancer – all types of cancer. And so he posed this question to them. He asked them to “Finish this sentence: My Cancer….”

The results are emotional – they span anger, despair, heartbreak, peace, humor, strength – the tumble of feelings experienced by cancer patients and their caregivers, family members and loved ones.

Take a look. Add your thoughts about your own struggles with mesothelioma, as a patient or someone who loves another afflicted with this terrible illness.

And send a little prayer for Leroy as he faces what may be the final steps on this long and difficult journey. Thank you, Leroy, for sharing of yourself so honestly, and through your experiences providing comfort and hope and laughter, and an assurance that it’s ok to sometimes be weak, or afraid, or angry, or despairing, to so many people.

SOURCE: myMeso › Blog asks, ‘Finish this Sentence: My cancer…’

The Libby program, dubbed the Libby Amphibole Health Risk Initiative, is funded by the Environmental Protection Agency and the Department of Health and Human Services’ Agency for Toxic Substances and Disease Registry. The study is expected to span 5 years with a goal of expanding knowledge about the potential and real health issues of asbestos exposure.

Libby already has proved a tragically rich source of knowledge about long-term exposure to high levels of asbestos, as the EPA’s initial examination and cleanup of the town focused on miners with direct exposure to the substance in their jobs, as well as people who handled asbestos mineral and were exposed to asbestos dust secondarily on a daily basis.

But, the Gazette reports, too little is know about exposure to lower levels of asbestos. EPA officials hope that results of the study will benefit not only the residents of Libby, but people throughout the country.

In April, the Minnesota state legislature approved $4.9 million for its own five-year study, to be conducted under the direction of the University of Minnesota, in connection with unusually high levels of mesothelioma affecting Iron Range mine workers. A large question in the area is whether dust from the taconite mined there – a fibrous mineral similar to asbestos – could also cause mesothelioma.

A key part of the Minnesota research will be an examination of previous asbestos exposure among mine workers, which will expand the base of knowledge about the affect of asbestos on health, in addition to the new studies about the effect of taconite.

According to the Billings Gazette, among tests to be included in the Libby study are a comparison of film and digital chest X-rays to determine which is best for assessing the lungs, a comparison of the health of people exposed to Libby asbestos in childhood versus people who weren’t, an expanded evaluation of Libby residents who were exposed to asbestos, an assessment of whether the health problems related to asbestos exposure extend beyond lung disease.

Researchers in Libby also hope to make improvements to public health tracking systems and patient health record databases, to better link exposure information to health conditions, the Gazette reports.

Gayla Benefield, perhaps one of the best-known residents of Libby for her early outcry about the health effects of asbestos on the people in her town, says she is happy to see an emphasis on research.

She was a charter member of the board of directors of the Center for Asbestos Related Disease (CARD), a not-for-profit clinic governed by a volunteer community board and devoted to healthcare, outreach, and research to benefit all people impacted by exposure to Libby amphibole asbestos. She only recently retired from her position with that organization.

“This is something I’ve wanted from the onset – more study and more research,” she says. “I’ve been especially interested in how much or how little of the (asbestos) fiber can cause meso, and I’ve been really concerned about the schools having been contaminated.”

The key, Benefield says, is to detect mesothelioma at its earliest stage, when there is still time for treatment to prolong life. When people around her in Libby began being diagnosed, she says, their mesothelioma was so advanced that many died within days of the diagnosis.

“We all – everyone in Libby – live under the threat of developing mesothelioma,” she says. “They’re never going to get all that (asbestos) fiber out of Libby, or anywhere for that matter, homes with asbestos insulation, so the research is the big thing. Any and all research having to do with mesothelioma is fantastic. A dream come true.”

SOURCE: myMeso › $8 million asbestos study in Libby

A special focus of this year’s conference was lung cancer, which is the leading cause of cancer deaths in the United States. Mesothelioma affects the lining of the lungs, and may also affect the abdomen or the pericardium (the sac around the heart).

There was a great deal of hope for a new drug, Erbitux, which doctors hoped would prove to have significant results in prolonging survival for lung cancer patients (it didn’t), as well as review of a currently popular lung cancer drug, Avastin, which in its Phase III trial was shown to help keep the disease from progressing.

But among the reports of facts and figures and products and treatments, was a report by Robert Bazell at MSNBC.com. Why, he wondered, are we not further along in the War on Cancer, which was declared as a national health priority in 1971, when President Richard Nixon signed the National Cancer Act.

The Act, Bazell points out, created the National Cancer Institute as a separate entity from the National Institutes of Health, with a dedicated budget for curing cancer. The NCI started with $230 million per year, and now has a budget of $5 billion.

Certainly, progress has been made, and there have been steady declines in breast, colon and prostate cancers, most due to better methods for early detection, Bazell points out. But, overall, he says, the death toll from cancer has declined only 5 percent between 1950 and 2005. FIVE percent!

What are the challenges? Why are we not winning this war?

Certainly, the nature of cancer itself has something to do with it – there are more than 200 diseases that fit into the definition of “cancer,” uncontrolled cell growth, he points out. And, even though funding has increased, if you adjust that $5 billion budget for inflation, spending on cancer research has actually been falling in recent years, he says.

But I was intrigued by his most compelling argument, which seems so simple. He notes that “it would be very useful to have a discussion on how much we spend on BASIC RESEARCH and PREVENTION, compared to how much we spend on marginally useful treatments.”

Is it possible that we can no longer see the forest for the trees?

SOURCE: myMeso › Why haven’t we won the war?

I’ve posted about John several times on this site. He was selected by the readers of Golf Digest magazine to participate in this first-ever celebrity foursome event. Diagnosed with Stage IV lung cancer, John used the event as a chance to raise awareness about lung cancer and to inspire those with the diagnosis to keep meeting the challenges of everyday life, and taking advantage of life’s unique opportunities.

This morning, Matt Lauer interviewed John and his brother, Kevin, who caddied for his big brother on the last hole in an emotional show of support. Watch the video at MSNBC.com.

In addition to this video, the Lung Cancer Alliance has the first part of what will be a multi-part documentary about John’s battle against Lung Cancer up on its site. John is a spokesperson for the organization. Watch the first episode at the LCA web site.

John has made it his mission to raise awareness about lung cancer, with the hopes of increasing funding for research and treatment. His campaign gives hope to everyone who battles lung cancer in its many forms, including those fighting mesothelioma, which affects the lining of the lungs. Thank you, John, for your willingness to go that extra mile!

SOURCE: myMeso › Atkinson conquers U.S. Open course

Of course, on Monday this week, it was announced and reported here that Onconase had failed the primary objective of its late-stage trial. This news was particularly disappointing since the drug already has orphan drug status in the U.S., Europe and Australia due to the very high hopes for its success. Despite failing in its primary objective, however, testing did show that the drug is effective in a secondary effect, helping to prolong the life of those treated after standard chemotherapy has failed.

The report of Onconase’s initial failure prompted WTN’s Clark to revisit Quintessence to find out if the Onconase failure would derail the development of their QBI-139. In his new report, Clarks says he found researchers undaunted and pressing forward. He says they hope to move the drug into clinical trials sometime this summer, and they believe the success of Onconase’s secondary role and hopeful FDA approval in that area will help pave the way for general acceptance of RNase cancer therapies.

In his earlier report, Clark pointed out that QBI-139 has several differences from Onconase in the way it is produced, which he believes will make it inherently more effective than Onconase.

He points out that mesothelioma is a particularly difficult cancer to treat, and wonders if the selection of mesothelioma as a research track by Alfacell was made to help fast-track the development of the drug. Perhaps, he wonders, the drug might be more effective on “more common and easier to treat cancers than mesothelioma.”

SOURCE: myMeso › Quintessence continues with mesothelioma drug

The author points out that celebrities like Patrick Swayze, who has pancreatic cancer, and Sen. Ted Kennedy, who has a brain tumor, are shown smiling, waving, even sailing off into the sunset – quite literally in Kennedy’s case – as they assure the public that they’re going to “beat” cancer.

This constant emphasis on maintaining a positive outlook is meant to encourage other cancer patients, to inspire them, to give them hope for the future. But sometimes it can have just the opposite effect, Hoffman says in the article, putting pressure on them to hide their fear, anger, resentment and exhaustion. They feel guilty, like they are letting people down when they show their true feelings.

The author talks to cancer survivors, doctors, social workers and psychologists about this culture of enforced hope. Read the full article, titled “When Thumbs Up Is No Comfort,” and let me know what you think. Has this happened to you? Do you struggle with this issue? When does encouragement cross the line and push you in the opposite direction, leaving you feeling bitter?

SOURCE: myMeso › The pressure to be positive

Results of the company’s late-stage trial of the drug showed that Onconase did not achieve significantly higher survival rates among patients with unresectable malignant mesothelioma when given in combination with doxorubicin, another cancer chemotherapy drug.

According to a report on Pharmaceutical Online, the preliminary results are based on 320 evaluable events that occurred in the clinical trial out of a total of 428 patients randomized. The analysis of the data did not show a statistically significant improvement for evaluable patients receiving Onconase plus doxorubicin. The median survival time (MST) for evaluable patients who received Onconase plus doxorubicin was 11.1 months as compared to 10.7 months for patients who received doxorubicin as a single agent.

However, there is a silver lining to the study. Pharmaceutical Online reports those patients who failed a previous chemotherapy regimen who received Onconase plus doxorubicin experienced a MST of 10.5 months compared with 8.7 months for those patients who received doxorubicin, which is considered a statistically significant result.

Reuters reports as a result of this secondary finding, Alfacell will now submit a marketing application to the Food and Drug Administration for use of the drug on those patients, with hopes to have it approved by the end of the year.

SOURCE: myMeso › Onconase fails in primary late-stage trial

According to Rob Grayson, director of marketing for the Meso Foundation, the event actually started as a purely scientific event, geared toward researchers and scientists, with technical presentations. However, at the time, there were no informational or educational events like it, and they found that patients, families and caregivers wanted to attend.

“Initially, these people would come and sit in on these high-level presentations by scientists, with very technical presentations. We saw the interest and our meeting has now evolved into more of a patient meeting, the scientists speak in more layman’s terms, and we’ve added programs to reach out to people who are also interested in the community of support and the activism that takes place,” Grayson said.

The advocacy element is a new piece of the symposium, added last year when the meeting coincided with debate in the Senate on the Ban Asbestos in America Act, S. 742, sponsored by Senator Patty Murray (D-WA).

“The day we lobbied, they took an administrative vote, and it passed in the Senate. So we’re going back to Washington this year,” Grayson said.

Advocacy efforts this year will include a rallying cry to the House of Representatives to move quickly to pass the legislation in the House, which bans asbestos and provides research funding for mesothelioma. Last week, the Foundation issued an action alert in support of The Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2007 (H.R. 3339), the companion to the Senate bill. The bill includes $10 million for mesothelioma research.

“Normally we’d hold the Symposium in a different city each year, but it’s almost the same timing as last year, with the bill pending, this time in the House, so we’re back to Washington,” Grayson explained.

Those attending the Symposium can register to participate in the advocacy efforts, and the Meso Foundation will arrange for them to meet personally with their congressional delegate, and will provide a training session to help advocates prepare for the meeting.

In addition to lobbying for passage of the House bill, Symposium advocates will request that the Senate’s Defense Appropriations Subcommittee maintain, for the second year, mesothelioma’s eligibility to compete for medical research funding from the Department of Defense. In 2007, the DoD appropriated $50 million and included mesothelioma as a research priority for its Peer Reviewed Medical Research Program, effective in the 2008 budget. The Meso Foundation is working for continuing and increasing funds for mesothelioma research in the 2009 defense appropriations bill.

“There currently is no ban on asbestos, so companies can use it however they see fit. We’ve pretty much stopped mining here, but asbestos is still used in about 3,000 products that you could go out and buy right now. Even if we banned asbestos tomorrow, it probably won’t change the rate of sickness for the next 50 years, due to the latency period of asbestos. That’s why the funding for research is so important,” Grayson says. “Advocacy and the call for a ban on asbestos raises awareness, and raises money for research, which is what we need to deal with the illness itself,” he said.

In addition to advocacy, the Symposium again will feature an educational program, with sessions covering topics including Peritoneal Mesothelioma, Pleural Meso Surgical Options, Emerging Therapies, Optimizing Patient Care, and Scientific Advances in Meso Research. Other educational programs will provide instruction on outreach topics including volunteerism, fundraising, peer support and advocacy, to help those who want to make a difference learn how to be most effective.

A Gala Dinner will honor those people living with meso, and recognize outstanding volunteers and advocates for their hard work and dedication to raising awareness. The dinner will feature a unique guest speaker – Seventh grader Lexi Miletto, the granddaughter of Joseph Miletto, who died in 2005 of peritoneal mesothelioma.

Scholarships for Symposium registration fees, as well as for transportation and accommodations, are still available for patients, family members and caregivers who would like to attend. Contact the Meso Foundation at www.curemeso.org or call 805-563-8400 for details.

The Mesothelioma Foundation was started in 1999, by attorney Roger Worthington. Unfortunately, Grayson says, there was an initial stigma because of his association, with people suspicious the Foundation was attempting to gather clients for his firm, so he removed himself from the Board of Directors and the Foundation was re-established as a non-profit, 501(c)3 organization. Today, with 8 staff members, the organization raises $2.5 million annually and funds more than $1 million in research projects.

“Currently, most of our funding goes to seed money to help researchers who have good ideas for treatment to validate their work, and take it to the NIH to get additional funding for the next step of the research,” Grayson explained. “We hope very soon that we’ll be able to fund clinical trials.”

SOURCE: myMeso › MARF announces Mesothelioma Symposium

John was diagnosed with stage IV lung cancer a little more than a year ago at age 38. He was selected from among 56,000 people who entered a contest sponsored by Golf Digest, the United States Golf Association and NBC Sports to play the U.S. Open Course as part of the celebrity team. You can read more of his inspiring story at Golf Digest online.

In addition to raising awareness, John and the Lung Cancer Alliance would like to use this event as an opportunity to raise funds for lung cancer research. They are encouraging people to make a donation or pledge to LCA in John’s honor. There’s even a great idea for a “game day” event, where lung cancer awareness supporters can collect pledges and host a pledge party with family and friends. John is urging donors to consider doubling their pledge amount if he breaks 100!

Visit the Lung Cancer Alliance U.S. Open pledge page for donation information, pledge party forms, and links for help and more information.

What a GREAT opportunity to raise the profile of lung cancer awareness, and communicate to America – and beyond – what an important issue this is for national health! Watch for John in the coming weeks, as he is scheduled to appear on national news programs like NBC Nightly News, The Today Show and The Tonight Show. I’ll try to update when his appearances are scheduled.

SOURCE: myMeso › Lung cancer advocate Atkinson U.S. Open pledge

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.

SOURCE: myMeso › Lung cancer survivor to play on U.S. Open course

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!!

SOURCE: myMeso › Living with Meso – Charlene’s story UPDATE

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.

SOURCE: myMeso › Compassionate Communications for the sick

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.

SOURCE: myMeso › The inevitability of death

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.

SOURCE: myMeso › Is pulmonary fibrosis linked to asbestos?

This week, I found a story that provides even more hope. It seems a Madison, Wisconsin-based biotech firm, Quintessence Bioscience, also has a promising mesothelioma drug in the works that operates along the same lines as ONCONASE, tagged QBI-139. The Quintessence drug is not yet in clinical trials.

Both drugs target RNA in cancer cells. They are therapeutic ribonucleases (RNases), which WTN News (Wisconsin Technology News) writer Steve Clark describes as “ubiquitous enzymes that destroy RNA.” He explains that researchers including the University of Wisconsin-Madison’s Ronald Raines, “discovered that RNases from non-human species sometimes are not regulated inside human cells and can cause cell death. Surprisingly, cancer cells are much more susceptible than normal cells to foreign RNases.”

The ONCONASE product is made from purified frog eggs. The Quintessence drug is 95 percent human, but still kills human cancer cells, Clark reports. Both drugs can kill a wide range of different human cancer types, he says, so its application has broad potential. The ONCONASE clinical trial data is from patients with malignant mesothelioma.

Clark reports that Quintessence is optimistic about its QBI-139 surpassing the positive results of ONCONASE. He says that frog-derived ONCONASE has been shown to cause allergic reactions in some patients, which would be mitigated in the 95 percent human-gene QBI-139. Additionally, he reports QBI-139 is less toxic than ONCONASE, which will allow it to be better tolerated by some patients in larger doses.

Currently, Clark reports, QBI-139 is being produced for use in a Phase I clinical trial, which is set to begin this summer and end sometime in 2009. It is anticipated that the trial will be held at the University of Wisconsin Carbone Cancer Center.

Read the full article at WTN News.

Steve Clark, Ph.D., is a former professor and medical researcher at the University of Wisconsin School of Medicine and Public Health, and is currently a freelance writer and consultant on biotechnology issues.

SOURCE: myMeso › New mesothelioma drug being developed

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.

SOURCE: myMeso › Living with Meso – Charlene’s story, Part 4

Perhaps one of the most interesting presentations at the recent Asbestos Awareness Day Conference in Detroit, at least to me, was that of Rebecca J. W. Cline, PhD, a senior scientist in Communication and Behavioral Oncology for the Karmanos Cancer Institute and Associate Professor of Family Medicine at Wayne State University.

Dr. Cline recently conducted a community-based focus group investigation in Libby, Montana, on psychosocial issues related to vermiculite/asbestos exposure. She also is currently leading a related population-based survey investigating that community.

She describes asbestos related disease as a “slow-motion technological disaster,” in which community and social responses have a great deal to do with how people fare, mentally and socially.

The basic definition of a technological disaster is a “catastrophic event caused by humans that results in the toxic contamination of the environment.” This includes asbestos contamination, as in Libby, resulting from decades of vermiculite mining, hence “slow moving,” as well as things like oil spills, which can devastate an area fairly quickly.

Libby is the epicenter of what Dr. Cline calls “the worst environmental disaster in the United States,” with multiple generations affected. She examined in particular how stigma associated with asbestos disease can have an impact on what people do.

Dr. Cline said there are two possible responses to technological disaster – the emergence of an altruistic community, or a community in conflict. The latter, she said, is common where there is human culpability, and it was the result in Libby.

The Libby study, conducted in 2006, included focus groups and some individual interviews with adults who lived and worked in the Libby area for at least the past five years. Interview subjects included people with connections to the mine, people with no connections to the mine, people affected by asbestos disease personally, people with family affected by the disease, and people with no disease in family or person.

She found that people fell into three categories – early believers, those who immediately understood the connection of vermiculite to what was happening to the town; late believers, those who initially resisted the idea that the mine made people sick; and those in denial or conflicted, who still did not or would not believe the mine was responsible.

Dr. Cline found that there was a great deal of stigma attached to asbestos-related disease, which created a barrier to social support. People with mesothelioma or other asbestos-related diseases were often afraid to talk about it, she said, even to close friends.

She said that the stigma came from a variety of sources. Conflicts included concerns about the economic disaster that the loss of the mine signified for the town, for which it was the main industry and source of jobs and security. People feared that if the mine were blamed for illness and deaths in the community there would be a decline in property values, loss of jobs, and a lost way of life.

As a part or a result of that, conflict also grew from a concern about what was the truth. There was a suspicion among neighbors that people claiming illnesses were phony, money-grubbing, greedy or opportunistic, making up illnesses to get a part of a financial settlement from the mining company.

People suffering from asbestos disease personally or within their family were afraid to talk about it out of fear that they would be ostracized and shunned by their neighbors and their community.

Dr. Cline told the story of two women, best friends for years, who bumped into each other in the Center for Asbestos Related Disease, which had been established in Libby to test, diagnose and treat patients. “What are you doing here?” one whispered. “I have the asbestos,” the other whispered back. “Me too,” came the whispered response. Best friends, but afraid at the core to admit to having asbestos disease.

On top of this, people who are ill or whose family members are ill fear the health and medical disaster itself, which was already upon them. They said they felt a lack of hope for survival, not just for themselves or their immediate family, but for generations.

Some of those in denial, or conflicted, still refuse to be tested for asbestos disease. They don’t want to know, Dr. Cline says, or they do not believe the mine could harm them.

There appears to be one universal in Libby.

“Across the groups, people felt like the community as a whole had been stigmatized, that everyone ‘knew about Libby’ and it had been given a bad reputation,” Dr. Cline said.

In addition to the physical toll, the mental toll of asbestos disease in Libby has been incalculable, she said.

SOURCE: myMeso › The mental toll of mesothelioma

After being diagnosed with mesothelioma at age 48, and exploring traditional options and undergoing four rounds of chemotherapy, Charlene Kaforey was looking for alternatives. Her physicians had earlier recommended a pleurectomy or pneumonectomy, which would remove part or all of the affected lung. That option was still on the table following chemo.

But after doing extensive research, Charlene was concerned about quality of life after such a procedure. Diagnosed as Stage III, she knew that only 25 percent of patients at her status survive 20 months, with less than 10 percent surviving 5 years. Both surgeries involve significant mortality rates and require 6-9 months recovery time.

“Currently, I don’t have a lot of symptoms,” she says. “I thought, why, if I feel good, do I want to end that by having the surgery and possibly never feeling good again?

“When I was at the hospital, I looked around the waiting room and saw everyone in wheelchairs, or hooked up to oxygen. I actually started crying. People don’t look good. They don’t look healthy, and they’re struggling. I thought, is this what’s going to happen to me? I didn’t feel a lot of hope.”

During her chemotherapy, from October-December 2007, Charlene researched mesothelioma and its treatments relentlessly. That was when she discovered the ITL Alternative Cancer Treatment Clinic, located in Freeport, Grand Bahama Island.

According to its web site, ITL Cancer Clinic was founded in 2003 and is directed by Dr. John Clement. ITL Cancer Clinic is the operating company for the Immunology Research Centre Ltd., a not-for-profit corporation of the Commonweal of the Bahamas, licensed to treat patients diagnosed with cancer. The Immunology Research Centre was founded in 1977 by Dr. Lawrence Burton, the developer of Immuno-Augmentive Therapy (IAT). The clinic treats all kinds of cancer, including mesothelioma.

Charlene’s daughter, working on a college project about promoting mesothelioma awareness inspired by her mother’s illness, discovered a web site with a link to the clinic. Charlene contacted the organization on whose site she found the link, to find out if they knew anyone who had been treated there. Initially, the answer was no. But two weeks later, they called her back and put her in touch with an ITL patient.

“I talked to her and she’s 6 years out,” Charlene said, which means the patient has survived six years after diagnosis. “She has it in both lungs and here she is, traveling and living life.”

Encourged, Charlene contacted the ITL Clinic directly for more information. Staff reviewed her medical history to see if she would be a candidate for treatment at ITL, and put her in touch with other mesothelioma patients being treated there.

“I’m skeptical by nature,” Charlene says. “It’s so out of the ordinary, but when I was talking to people out 6 years and feeling good compared to others who did more traditional treatments, some of whom didn’t make it very long, or life was hard, and it seemed like a good option for me.”

Friends and family initially resisted the idea, feeling that she should take the more traditional path, including surgery.

“People thought I was crazy at first. They had read all the literature [from traditional treatment facilities] and felt that I needed to do the surgery,” Charlene says. “Do I know for certain this will work? No. But I just don’t think the statistics support my having a good quality of life or a good chance of survival with surgery and traditional methods. So I’m going to do it.”

Next: The ITL Experience

SOURCE: myMeso › Living with Meso – Charlene’s story, Part 3

It is hoped that the local proclamation will bring attention to national efforts to completely ban asbestos in the U.S. and raise awareness about the dangers that still exist.

In Montgomery, Asbestos Awareness Day strives to educate the public about the ongoing dangers of asbestos exposure, which can lead to asbestos-related disease such as asbestosis, lung cancer, and malignant mesothelioma.

Pictured is Wendi Lewis, Conversation Architect for Beasley Allen, receiving the proclamation from Mayor Bright.

SOURCE: myMeso › Mayor declares Asbestos Awareness Day

NEW YORK VOLUNTEER CHAPTER OF MESO FOUNDATION HOSTS THIRD ANNUAL5K WALK FOR HOPE

MERRICK, NY: The New York Volunteer Chapter of the Mesothelioma Applied Research Foundation (Meso Foundation) will hold the third annual “5K Walk for Hope” on April 13, 2008 at 10am in Eisenhower Park, located in East Meadow, NY. Over the past two years, the event has raised more than $30K and the volunteer team hopes to build on that success. All proceeds will go to the Meso Foundation, a 501 (c) (3) organization that has awarded more than $5 million in grants for mesothelioma research since 2000.

Mesothelioma is an extremely rare cancer caused by exposure to asbestos and most often affects the lungs, although it can also invade the stomach and groin areas. In the United States, 2,500 to 4,000 patients are diagnosed with mesothelioma annually, yet the disease has yet to find the national spotlight for research and funding.

The 9/11 tragedy in New York City demonstrates the continued, long-term threat of mesothelioma. Estimates of the amount of asbestos destroyed in the terrorist attack in Manhattan range as high as 1,000 tons. The impact pulverized this asbestos into tiny, microscopic fibers to which the firefighters, rescue workers, and other heroes of 9/11 were exposed, as well as workers, residents, and school children who returned to the area in the weeks and months following.

After mesothelioma’s long latency period, which is 15-50 years, the risk of cancer among those most heavily exposed could reach as high as one in ten. This year alone has seen the number of reported cases of illness and death of Ground Zero workers increase and unfortunately that number will only continue to rise, which is why more research is needed.

Registration for “5K Walk for Hope” is $15. Those who are interested in participating should contact Janice Malkotsis at (917) 751-2776. For more information about The Meso Foundation, please visit www.curemeso.org.

SOURCE: myMeso › Meso Foundation NY chapter Walk for Hope

When Charlene Kaforey, 48, was diagnosed with pleural mesothelioma in July 2007, she immediately began seeking out information and treatment options.

The prognosis for mesothelioma is still bleak. There is no cure, and most studies estimate survival time between 4-12 months, depending on the stage of presentation. Charlene’s mesothelioma was diagnosed relatively early, so she was hopeful.

She visited mesothelioma specialist Dr. David J. Sugarbaker at Brigham & Women’s Hospital in Boston, Mass., Dr. Valerie W. Rusch at Memorial Sloan Kettering Cancer Center in New York, and Dr. Harvey Pass at the NYU Cancer Institute.

Immediately, doctors talked about extrapleural pneumonectomy, a surgery to remove the entire lung, entire diaphragm, and the lining of the chest cavity and the heart. Surgery would be followed by 6 weeks of radiation, and possibly chemotherapy. One doctor even talked about performing a heated chemotherapy wash of the chest cavity while on the operating table. At that time, they believed Charlene was a stage I, and such surgeries could give her a 40 percent chance of a 5 year survival. One doctor mentioned getting her as much as 10 years.

One of the doctors talked about limiting the surgery to a pleurectomy/decortication, a technique to remove the parietal pleura from the lung. The median survival after pleurectomy for malignant mesothelioma ranges from 6-21 months, and 9-40 percent of patients survive up to 2 years. However in later stages, the survival rates are almost identical between the two surgeries.

Research is still unclear as to whether extra-pleural pneumonectomy provides significantly greater benefits than pleurectomy, and if either is significantly more effective than non-surgical options.

Charlene didn’t have a lot of tumor bulk, so she was sent for a mediastinoscopy, a biopsy surgery that allows doctors to view the middle of the chest cavity and to remove lymph nodes from between the lungs to test them for cancer or infection. They found that Charlene did have lymph node involvement.

“I went from a Stage I to Stage III overnight,” she says. “It was shocking.”

Because of the lymph node involvement, doctors recommended she postpone considering pleurectomy or pneumonectomy and undergo chemotherapy. Survival rates from either surgery for a Stage III patient is much less, and only 25 percent survive 20 months, with less than 10 percent surviving 5 years. Both surgeries involve significant mortality rates and require 6-9 months recovery time.

“Looking at it now, I feel in some ways that having the lymph node involvement was a godsend for me,” Charlene says. “I mean, my condition was more serious, but because I was doing the chemotherapy, it gave me time to look for more information and to really think more about my options. Otherwise, I would have rushed into a very serious surgery with a long, difficult recovery and I’d probably be without a lung and diaphragm right now.”

Charlene offers one word of caution to meso patients.

“While you may feel time is of the essence, don’t rush into a procedure until you really understand what is involved, and what benefits you can expect to receive, what the risks and complications are, how long and difficult the recovery will be,”she said.

She talked to other meso patients and read everything she could get her hands on. Quality of remaining life is a big issue to consider.

“I realized that I might have only 18 to 30 months maximum to live, and that I would spend at least 9 months in a brutal recovery. I was feeling good with little to no symptoms. I couldn’t justify giving up my good health to surgery, knowing I may never feel good again, and might have only another 9 months of poor quality life after recovering from the surgery,” Charlene says.

Next: Charlene explores alternative medicine

SOURCE: myMeso › Living with Meso – Charlene’s story, Part 2

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.

SOURCE: myMeso › Become Patient Active

The vascular disrupting agent (VDA) is under investigation in treating specific types of cancer with high unmet medical need and poor prognosis. Mesothelioma is included in the study, and is entering Phase II clinical trials.

The company reports favorable findings in mesothelioma patients in a Phase I trial. Based on these results, Cytopia is beginning feasibility analysis for a Phase II study in mesothelioma patients who have failed the currently approved drug, Alimta (pemetrexed).

The single-arm study will include 20-30 patients in Australia, the United States and Asia. The company hopes that activity in second-line mesothelioma could lead to expedited drug approval and a fast to-market strategy for the compound in this cancer indication. They expect to file reports on this study in the third quarter of 2008.

Cytopia, Ltd., is an Australian biotechnology company focused on the discovery and development of new drugs to treat cancer.

SOURCE: myMeso › Australian company advances anti-cancer drug

The Newsday.com article mentions that Reeve worked at a morgue in the toxic dust of Ground Zero following 9-11.

While her death has not been officially linked to exposure to materials released from the collapsing buildings, there is a great deal of study about the link between the disaster and mesothelioma and other asbestos-related diseases, which affect many of the immediate responders and those who worked on the site in the many days and months afterward.

Today, the official New York City Fire Department web site has the story:

EMS officers, paramedics and EMTs attended the plaque dedication for Paramedic Deborah Reeve on March 11 at EMS Station 20 in the Bronx. Paramedic Reeve died of mesothelioma (lung cancer) on March 15, 2006. “This loss was a great blow to the members of this EMS station, the Department and the City of New York,” said Fire Commissioner Nicholas Scoppetta. “But we hope this ceremony will serve as a reminder to her family that we understand your pain has not diminished and your loss has not been forgotten.” Paramedic Reeve served with the EMS Command for 17 years before her death. She was remembered as smart, hard working and an outstanding paramedic. “She was the strongest person I ever met,” said Reeve’s husband, Paramedic David Reeve, also of Station 20. He recalled how they met at the EMS Training Academy, when she sat behind him in class and made fun of his southern accent. He was joined at the ceremony by their children, Elizabeth, 12, and Mark, 8. “All new members should try to model themselves after Debbie – the commitment and dedication she showed every day,” said Chief of Department Salvatore Cassano. Chief of EMS John Peruggia read the poem “She is Gone” in Paramedic Reeve’s memory, saying it emphasized “the importance of remembering Debbie, who gave so much to this city.” The plaque was unveiled to cheers and tears from her family, friends and fellow EMS personnel. It will be hung at EMS Station 20, located at Jacobi Medical Center in the Morris Park/Pelham Parkway section of the Bronx. “She was an excellent, outstanding paramedic … she really knew her stuff,” said Captain Felipe Periu of Station 20.

SOURCE: myMeso › FDNY honors Paramedic Deborah Reeve

SOURCE: myMeso › Mission Statement

Randy is a 47-year-old Professor of Computer Science, Human-Computer Interaction, and Design at Carnegie Mellon University (CMU) in Pittsburgh, Pennsylvania. In September 2006, he was diagnosed with metastatic pancreatic cancer. He pursued a very aggressive cancer treatment that included major surgery and experimental chemotherapy; however in August of 2007 he was told that the cancer had metastasized to his liver and spleen. He then started palliative chemotherapy intended to extend his life as long as possible, which was then estimated to be three to six months. He remains vigorous and active six months later (February 2008.)

Although Randy’s cancer is not mesothelioma or asbestos-related, I thought his message could be inspiring and provide hope, as people diagnosed with mesothelioma are usually not expected to live for long, and most die within two years of their diagnosis.

SOURCE: myMeso › The Last Lecture

What is Mesothelioma?

Mesothelioma cancer, or malignant mesothelioma, is an extremely rare disease generally affecting the lining of the lungs, and, more rarely, the abdominal cavity and/or the heart. Mesothelioma cancer is most strongly associated with exposure to asbestos, and can remain latent in those exposed for 30 to 40 years.

There are three types of mesothelioma cancer: pleural, in which the cancer affects the lining of the lungs/chest;  peritoneal, which affects the lining of the abdominal cavity; and pericardial, which affects the lining of the heart.

Pleural mesothelioma is the most common form of malignant mesothelioma, accounting for approximately three out of every four cases. The pleura is defined as the outer lining of the lungs and chest cavity. Pleural mesothelioma typcially has a latency period of 30-40 years or longer.

Peritoneal mesothelioma generally accounts for about 25 percent of maglignant mesothelioma cases diagnosed each year. It can have a shorter latency period than pleural mesothelioma, developing in 20-30 years or shorter. It affects the peritoneum, which is the lining of the abdominal cavity. Peritoneal mesothelioma generally occurs more often in males than females.

Pericardial mesothelioma, which affects the pericardium, the lining of the heart, is extremely rare. This form of malignant mesothelioma is usually fatal, due to its difficulty in diagnosis and treatment. It is generally diagnosed in a very late stage, and surgical or other treatment options are dangerous and difficult.

Mesothelioma in general is fairly rare in the United States. There are an estimated 2,000 to 3,000 new cases of mesothelioma each year in the United States. However, in European countries, especially the UK, as well as in Australia, the rate of mesothelioma is increasing.

For years, mesothelioma was thought to be  rare in people under age 55. Traditionally seen primarily in older men, usually with a background of working in a factory, shipyard, mine or other environment with heavy asbestos exposure, today more and more cases of secondary exposure are being diagnosed, and it is affecting greater number of women.

The average age for someone with mesothelioma used to be around 72, but each year it seems mesothelioma affects younger people, and a greater number of women. Last year, a 3-year-old girl was diagnosed with mesothelioma, stunning the physicians who were treating her.

Mesothelioma is a serious disease. By the time the symptoms appear and cancer is diagnosed, the disease is often advanced. The average survival time is about 1 year. The 5-year relative survival rate is around 10%, but this rate has been slowly improving.

The 5-year survival rate refers to the percentage of patients who live at least 5 years after their cancer is diagnosed. Many of these patients live much longer than 5 years after diagnosis, and 5-year rates are used to produce a standard way of discussing prognosis.

Five-year relative survival rates do not include patients dying of other diseases and are considered to be a more accurate way to describe the prognosis for patients with a particular type and stage of cancer. That means that relative survival only talks about deaths from mesothelioma. Of course, 5-year survival rates are based on patients diagnosed and initially treated more than 5 years ago. They may no longer be accurate. Improvements in treatment result in a more favorable outlook for recently diagnosed patients.

Symptoms of Mesothelioma

Early symptoms of mesothelioma can be very general. Thus, they are often ignored.

Symptoms of pleural mesothelioma (lining of the chest) can include:

* pain in the lower back or at the side of the chest

* shortness of breath

* trouble swallowing

* hoarseness

* cough

* fever

* sweating

* tiredness

* weight loss

* swelling of the face and arms

* muscle weakness

Symptoms of peritoneal mesothelioma (lining of the abdominal cavity) include:

* belly pain

* weight loss

* nausea

* vomiting

* fluid or a lump in the abdomen

Symptoms of pericardial mesothelioma (lining of the heart) include:

* constrictive pericarditis

* pericardial effusion

* cardiac tamponade

* heart failure caused by myocardial infarction

Of course, these same symptoms can also be caused by other minor ailments. But if you have worked with asbestos and you have any of these symptoms, you should see your doctor right away.

Diagnosing Mesothelioma

Diagnosing mesothelioma is often difficult, because the symptoms are similar to those of a number of other conditions.

Diagnosis begins with a review of the patient’s medical history, including any history of asbestos exposure. A complete physical examination may be performed, including x-rays of the chest or abdomen and lung function tests. As a rule, a chest x-ray is not useful in finding mesothelioma early.

One test being studied is a blood test. This test measures the levels in the blood of a certain protein that is higher in people who have lung damage due to asbestos. It is even higher if the person has mesothelioma.

A CT (or CAT) scan or an MRI may also be useful. A CT scan is a series of detailed pictures of areas inside the body created by a computer linked to an x-ray machine. In an MRI, a powerful magnet linked to a computer is used to make detailed pictures of areas inside the body. These pictures are viewed on a monitor and can also be printed.

A biopsy is needed to confirm a diagnosis of mesothelioma. In a biopsy, a surgeon or a medical oncologist (a doctor who specializes in diagnosing and treating cancer) removes a sample of tissue for examination under a microscope by a pathologist. A biopsy may be done in different ways, depending on where the abnormal area is located.

If the cancer is in the chest, the doctor may perform a thoracoscopy. In this procedure, the doctor makes a small cut through the chest wall and puts a thin, lighted tube called a thoracoscope into the chest between two ribs. Thoracoscopy allows the doctor to look inside the chest and obtain tissue samples.

If the cancer is in the abdomen, the doctor may perform a peritoneoscopy. To obtain tissue for examination, the doctor makes a small opening in the abdomen and inserts a special instrument called a peritoneoscope into the abdominal cavity.

If these procedures do not yield enough tissue, more extensive diagnostic surgery may be necessary.

If the diagnosis is mesothelioma, the doctor will want to learn the stage (or extent) of the disease. Staging involves more tests in a careful attempt to find out whether the cancer has spread and, if so, to which parts of the body. Knowing the stage of the disease helps the doctor plan treatment.

Mesothelioma is described as localized if the cancer is found only on the membrane surface where it originated. It is classified as advanced if it has spread beyond the original membrane surface to other parts of the body, such as the lymph nodes, lungs, chest wall, or abdominal organs.

New developments in Diagnosis of Mesothelioma

A recently published report in the Journal of the American Medical Association holds out hope for earlier detection of mesothelioma, a deadly cancer linked to asbestos exposure.

Researchers compared three types of endoscopic collection for accuracy in detecting cancerous cells in the lymph nodes to determine their accuracy.

Typically, doctors use several different techniques to diagnose lung cancers, including mesothelioma. Those techniques include physical exams, chest X-rays, CT scans and surgical biopsies to examine the cells in the lungs and the lymph nodes.

Lung cancer is one of the most common cancers worldwide, and the outcomes are typically unpromising. The low survival rates for lung cancer are often attributed to the difficulty of diagnosing the disease early enough for effective treatment.

This is especially true of mesothelioma, a disease that affects the tissues of the lining between the chest wall and the lungs. Often, by the time mesothelioma is detected, the cancer has reached untreatable stages.

Because of this, researchers are increasingly turning to new methods of detection that may identify deadly cancers at earlier stages when chemotherapy, surgery and other treatments may be effective.

The most accurate methods of diagnosis to date involve collecting cell samples from the lungs or lymph nodes for examination under a microscope. The most common method for collecting these cells is a mediastinoscopy, which is an invasive surgery that involves anesthesia and incision. The surgeon makes an incision at the top of the breast bone and inserts a thin, lighted tube into the chest cavity to withdraw cell and fluid samples.

Mediatinoscopy is typically used to determine whether fluids in the chest cavity contain cancerous cells or asbestos fibers.

In the past few years, doctors have developed less invasive procedures to collect tissue samples from the chest. These procedures use an endoscope, a small medical device that consists of a camera mounted on a flexible tube. Ultrasound probes, needles and other instruments can be inserted through the tube to remove samples for biopsy. These endoscopic procedures are far less invasive than more traditional methods, reducing the risks to patients who undergo them.

In the study reported in JAMA, researchers compared three different procedures using an endoscope, each of them considered minimally invasive:

• Transbronchial needle aspiration (TBNA)

• Endobronchial ultra-sound guided fine needle aspiration (EBUS-FNA)

• Transesophegeal endoscopic ultrasound-guided fine needle biopsy (EUS-FNA)

In each procedure, an endoscope was used to remove tissues or fluids with a fine needle. The researchers then compared the findings among the three methods to determine which was the most sensitive for detecting the presence of cancerous cells in the lymph nodes of the chest.

The study consisted of tests taken on 138 patients in the U.S. who were believed to have lung cancer. Each patient underwent all three procedures in sequence.

The results of the study showed:

- 30% (42) of the patients had malignant lymph nodes

- EBUS-FNA detected 29 of the cancers. TBNA only detected 15

- EUS-FNA and EBUS-FNA used in combination detected 93% of the cancers.

The combination was also able to detect malignancies in patients who would not have been identified by CT scans of the chest. The results of the study suggest that the minimally invasive procedures may be a viable alternative to more invasive standard procedures for evaluation patients believed to have lung cancer.

The lower risks associated with the procedure will make the diagnostic process more comfortable for patients and provide for a shorter recovery time.

Reference: Wallace, M, Pascual, J, Raimondo, M, et al. Minimally invasive endoscopic staging of suspected lung cancer. Journal of American Medical Association. 2008. 299(5) 540-546. Source: www.asbestos.com

New System May Give Lung Cancer Patients Hope

The Associated Press Aug. 31, 2007 http://www.msnbc.msn.com/id/20533486

Thousands more lung cancer patients each year could be offered surgery or other aggressive therapy under a new system that classifies many tumors as more treatable than in the past.

It is the first big overhaul of a decades-old method used to predict survival and help determine whether a lung cancer patient will have surgery, chemotherapy or be treated at all.

The new guidance is to be presented at a conference of lung cancer specialists in Seoul, South Korea, that starts Saturday. It is expected to be adopted by policy-making groups in the next year. Lung cancer is the world’s top cancer killer, claiming 1.3 million lives each year.

In the United States, 213,380 new cases and 160,390 deaths from the disease are expected this year. Nearly 60 percent of people die within one year of diagnosis, and nearly 75 percent die within two years, American Cancer Society statistics show.

In treating it, doctors use a formula called tumor staging. It is based on a tumor’s size, how far it has spread and other factors to predict a patient’s survival odds and to guide treatment.

More precise sorting

The current system was developed from about 5,000 tumor samples from University of Texas M.D. Anderson Cancer Center in Houston decades ago — before improved scanning technology was available to evaluate a cancer’s spread.

The new plan is based on 100,000 tumor samples from around the world including Asia, where lung cancer rates are projected to climb because of trends in smoking, unhealthy lifestyles and aging populations. It keeps four broad groupings but sorts people more precisely based on refined understanding of tumor characteristics.

The result: “There will clearly be shifting of patients from categories not operable to operable” — as many as 10,000 a year in the United States, said Dr. David Johnson, a lung cancer specialist at Vanderbilt University in Nashville, Tenn. He reviewed the plan, which was partly published in a medical journal recently.

The stage of the tumor at diagnosis is the best predictor of survival. Only 20 percent of cases are diagnosed in Stages 1 or 2, when tumors are small and confined to a lung, Johnson said. About 30 percent to 40 percent are found in Stage 4, after they have widely spread. The rest are in the middle.

Five-year survival rates are 47 percent for Stage 1 and 26 percent for Stage 2, but only 8 percent for Stage 3, and 2 percent for Stage 4, according to the American College of Surgeons.

Most lung cancers are the type called ”non-small cell,“ which is covered by the new staging system. The system was developed by the International Association for the Study of Lung Cancer, a group of lung cancer specialists from around the world.

Changing groupings

Dr. Peter Goldstraw, a surgeon at the Royal Brompton Hospital in London, led the project, and Canadian scientists independently validated the recommended changes by comparing survival across geographic regions.

Among the changes: creating more sub-stages for tumor size, reassigning some large tumors to a more advanced stage, reclassifying tumors that have spread into the fluid surrounding the lung, and recognizing that spread to certain lymph nodes is more dangerous than its spread to others.

“By changing some of these groupings, some patients will get moved to an earlier stage of disease for which we tend to be more aggressive” in treatment, said Dr. Joan Schiller, a lung cancer specialist at the University of Texas Southwestern Medical Center in Dallas .

“Before, a patient may have only been offered chemotherapy. They may now be offered chemotherapy and radiation,” or more intense radiation, she said. Conversely, some people thought to have earlier-stage tumors now will be grouped with those whose tumors have widely spread, and discouraged from undergoing therapies that have little chance of helping them.

“In some cases, patients were getting inappropriately aggressive treatment,” Schiller said.

Some people with very small tumors may get away with less therapy — taking out just a segment of lung instead of an entire lobe, said Dr. Stephen Swisher, a chest surgeon at M.D. Anderson.

The impact of the changes in Europe and Japan is unclear because doctors in those countries tend to remove whole lungs rather than lobes to treat lung cancer, Johnson noted. Doctors hope that ultimately survival will improve, but that won’t happen “unless we get patients into the right hands” and they get correct treatment, Johnson said.

Revising the staging system also will do little good if doctors don’t do the right tests to properly stage a tumor, said Dr. Len Lichtenfeld, deputy chief medical officer of the American Cancer Society. Staging for lung and other types of cancer should become even more precise in the near future as biomarkers and gene tests are developed to better sort patients, he added.

© 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Risk Factors for Mesothelioma

The main risk factor for developing mesothelioma is exposure to asbestos.

Asbestos refers to a family of fibrous minerals made of silicate. Asbestos was once used in many products such as insulation, floor tiles, door gaskets, soundproofing, roofing, patching compounds, fireproof gloves and ironing board covers, and even brake pads.

As the link between asbestos and mesothelioma has become well known, the use of this material has almost stopped. Most use stopped after 1989, but it is still used in some products. Experts have linked this drop in asbestos use to the fact that the rate of development of mesothelioma is no longer increasing [in the U.S.].

Still, up to 8 million Americans may already have been exposed to asbestos. Exposure to asbestos particles suspended in air and building materials is much less hazardous except when they are being removed.

Since asbestos is a naturally occurring mineral, it can also be found in dust and rocks in certain parts of the United States as well as the world.

According to the U.S. Environmental Protection Agency, as many as 733,000 schools and public buildings in the country today contain asbestos insulation. As many as 10% to 15% of schools in the United States may contain asbestos insulation.

People who may be at risk for occupational asbestos exposure include some miners, factory workers, insulation manufacturers, railroad workers, ship builders, gas mask manufacturers, and construction workers, particularly those involved with installing insulation.

Several studies have shown that family members of people exposed to asbestos at work have an increased risk of developing mesothelioma, because asbestos fibers are carried home on the clothes of the workers.

The incidence rate for mesothelioma in men is dropping, probably because they are no longer being exposed directly to asbestos in their work. But the incidence rate for mesothelioma in women is steady, which suggests that they are being exposed in a way that is not directly tied to work, but more to their environment either at home or work. One example would be asbestos in buildings where they work or live.

A study from California also links mesothelioma to naturally occurring asbestos deposits in mountains.

Another important point about asbestos and mesothelioma is that the risk of mesothelioma does not drop with time after exposure to asbestos. The risk appears to be lifelong and undiminished.

There are 2 main forms of asbestos — serpentine and amphiboles. Serpentine fibers are curly and pliable. Chrysotile is the only type of serpentine fiber and it is the most widely used form of asbestos. Amphiboles are thin, rod-like fibers. There are 5 main types — crocidolite, amosite, anthrophylite, tremolite, and actinolyte. Amphiboles (particularly crocidolite) are considered to be the most carcinogenic (cancer-causing).

However, even the more commonly used chrysotile fibers are associated with malignant (cancerous) mesotheliomas and should be considered dangerous as well.

When asbestos fibers are inhaled, most are cleared in the nose, throat, trachea (windpipe), or bronchi (large breathing tubes of the lungs). Fibers are cleared by sticking to mucus inside the air passages and being coughed up or swallowed. The long, thin, fibers are less readily cleared, and they may reach the ends of the small airways and penetrate into the pleural lining of the lung and chest wall. These fibers may then directly injure mesothelial cells of the pleura, and eventually cause mesothelioma.

Asbestos fibers can also damage cells of the lung and result in asbestosis (formation of scar tissue in the lung), and/or lung cancer.

The risk of lung cancer among people exposed to asbestos is increased by 7 times, compared with the general population. Indeed, asbestosis, mesothelioma, and lung cancer are the 3 most frequent causes of death and disease among people with heavy asbestos exposure.

Peritoneal mesothelioma, which forms in the abdomen, may result from coughing up and swallowing inhaled asbestos fibers. Cancers of the larynx, pancreas, esophagus, colon, and kidney may also come from asbestos exposure, but the increased risk is small.

The risk of developing a mesothelioma is related to how much asbestos a person was exposed to and how long this exposure lasted. People exposed at an early age, for a long period of time, and at higher levels are most likely to develop this cancer.

Mesotheliomas take a long time to develop. The time between first exposure to asbestos and diagnosis of mesothelioma is usually between 20 and 50 years.

Other Asbestos-Related Cancer

Asbestos Related Lung CancerLung cancer, or bronchial carcinoma, occurs in several forms. The most common causes of lung cancer are smoking and asbestos.

This web site has focused on the most lethal of the lung cancers – mesothelioma. Not every asbestos-related lung cancer, however, is a mesothelioma. Other thoracic carcinomas, such as adenocarcinoma, are also caused by exposure to asbestos.

The connection between asbestos exposure and lung cancer was noted as early as 1925, and confirmed over the next 70 years by many epidemiologic studies of asbestos-exposed workers.

The four main types of commercially used asbestos, chrysotile, amosite, anthophyllite, and mixtures containing crocidolite, have all been associated with an increased risk of lung cancer. About one in seven people who suffer from asbestosis, a lung disease resulting from high exposure to asbestos, eventually develop lung cancer.

Asbestos is estimated to account for 3,400 to 8,500 new lung cancer cases in the United States each year. Like mesothelioma, the latency period between asbestos exposure and the development of asbestos related lung cancer may be two, three, four, or even more decades.

Very often, asbestos-related cancer victims also suffer from asbestosis, a scarring of the lung tissue caused by asbestos exposure. About one in seven people with asbestosis will eventually develop lung cancer.

Although commonly associated with lung cancer, adenocarcinoma is a type of cancer that develops in cells lining glandular types of internal organs, such as the lungs, breasts, colon, prostate, stomach, pancreas, and cervix.

Another type of adenocarcinoma, mucinous adenocarcinoma, accounts for only 10-15% of all adenocarcinomas and is particular to aggressive carcinomas that are comprised of at least sixty percent mucus. Non-small cell lung cancers make up over three quarters of all new lung cancer cases in the United States.

While there is only one type of small cell lung cancer, there are three types of non-small cell lung cancer. The three types of non-small cell lung cancer are squamous carcinoma, large cell carcinoma, and adenocarcinoma. When adenocarcinoma develops in the lung’s air sacs, it is called bronchioalveolar adenocarcinoma. About forty percent of all lung cancer cases diagnosed today are adenocarcinoma.

The progression of adenocarcinoma is quite unpredictable. In most cases, adenocarcinoma spreads slowly and causes very few lung cancer symptoms. But it can also be extremely invasive, aggressively spreading through the body and causing death before it can be treated. Given the disease’s variability, the five-year prognosis for patients with adenocarcinoma is dim: most are given only a 10 percent chance of survival.

Sometimes, tumors spread to the liver, adrenal glands, and bones, making adenocarcinoma much more difficult to treat. Symptoms of adenocarcinoma lung cancer may include shortness of breath, the coughing up of blood, fatigue, chest pains, and unexplained weight loss. Adenocarcinoma is usually treated with surgery, radiation therapy, and chemotherapy.

SOURCE: myMeso › What is Mesothelioma?

On October 6th, 2004, Senator Harry Reid introduced Senate Asbestos Awareness Day Resolution (S. Res. 448). This resolution, proposed by the Asbestos Disease Awareness Organization (ADAO), designates April 1st as National Asbestos Awareness Day. Then, in 2007, Senate Resolution 108 designated the first week of April as National Asbestos Awareness Week.

In conjunction with Asbestos Awareness Day, the ADAO is having a conference March 28-29, with a remembrance service on Sunday, March 30. These events will be held in Detroit, MI, with the main conference events on Saturday at the Karmanos Cancer Institute. I am planning to attend the conference and hope to put up a lot of posts about the events and speakers.

In addition to the main conference activities, Jordan Zevon, son of acclaimed singer-songwriter Warren Zevon, who passed away from Mesothelioma in 2003, will be at the conference for a meet-and-greet Friday night and will speak on Saturday. He is the National Spokesperson for ADAO. Also, ADAO will present a number of awards Saturday to honor the people who have made a difference in Asbestos Disease Awareness.

For more information, or to register to attend the conference (deadline is TOMORROW, Feb. 28!) visit ADAO online.

SOURCE: myMeso › Asbestos Awareness Day April 1

One of the difficulties in diagnosing mesothelioma is that it affects the tissues of the lining between the chest wall and the lungs. As a result, often, by the time the mesothelioma is detected with more traditional methods such as physical exams, x-rays, CT scans and surgical biopsies, it’s in advanced and untreatable stages.

But three new, less invasive, endoscopic procedures are proving to have better results at identifying mesothelioma. The report explains that each of these new procedures uses an endoscope to remove tissues or fluids with a fine needle. The three procedures are listed as transbronchial needle aspiration (TBNA), endobronchial ultra-sound guided fine needle aspiration (EBUS-FNA), and transesophegeal endoscopic ultrasound-guided fine needle biopsy (EUS-FNA).

Studies are now being done to compare the findings among these three methods to determine which is the most sensitive for detecting the presence of cancerous cells in the lymph nodes of the chest. The journal says tests involved 138 patients in the U.S. believed to have lung cancer, all of whom underwent all three procedures in sequence. According to the report, the results of the study show the following:

• 30 % (42) of the patients had malignant lymph nodes
• EBUS-FNA detected 29 of the cancers. TBNA detected 15.
• EUS-FNA and EBUS-FNA used in combination detected 93% of the cancers! The combination also was able to detect malignancies in patiens who would not have been identified by CT scans of the chest.

In addition to the better results, the less-invasive procedures tend to better overall for patients, presenting less risk than more traditional surgical methods.

This study is referenced under Wallace, M, Pascual, J, Raimondo, M, et al. Minimally invasive endoscopic staging of suspected lung cancer. Journal of American Medical Association. 2008. 299(5) 540-546

To read the article in its entirety, visit http://www.asbestos.com/news/endoscopy-shows-promise-for-detecting-mesothelioma.html

SOURCE: myMeso › New Tests for Earlier Detection of Mesothelioma

This is a cancer that has a really long incubation period, with the time between first exposure to asbestos and the development of mesothelioma ranging from 20 and 50 years. Even scarier, the American Cancer Society (ACS ) says that the risk of mesothelioma DOES NOT DROP with time after exposure to asbestos. The risk appears to be lifelong and undiminished.

As a result, most patients diagnosed with mesothelioma are older. The ACS says about three-fourths of people diagnosed are over 65 years old. They may already be weak from symptoms of the disease, or unable to tolerate aggressive therapies.

Of course, it’s now known that exposure to asbestos is the main reason for the development of mesothelioma, and also asbestosis (formation of scar tissue in the lungs) and adenocarcinoma, another form of the asbestos-related cancer. The highest risk group seems to be people who were exposed to asbestos through their work. The ACS estimates that up to 8 million Americans may already have been exposed to asbestos.

As awareness of mesothelioma grows, it is hoped that more people who know they were exposed to asbestos will seek diagnosis early. It has been shown that a chest x-ray often isn’t very effective in diagnosing mesothelioma, so there has been interest in a blood test that measures the levels of certain proteins that is higher in people who have lung damage due to asbestos.

But even with early diagnosis, traditional cancer treatments, like chemotherapy, radiation and surgery, are not very effective against mesothelioma. One problem is that it does not grow as a single mass. Instead it tends to spread along surfaces, nerves, and blood vessels. This makes it hard for one or more types of treatment to get rid of all of the disease. Cancer treatments may ease symptoms, like shortness of breath, pain, bleeding or trouble swallowing, but they are unlikely to provide a longterm cure.

So how do people continue to hope? What keeps them fighting? I’d really like to know. Please share your story with me.

Also, a GREAT site to check out is the Lung Cancer Support Community. Their link is in the blogroll, or type in www.lchelp.org. They have message boards, chats, information and even a place to start your own blog.

SOURCE: myMeso › How to keep hoping?