The Mesothelioma Applied Research Foundation has announced the recipients of its 2009 Mesothelioma Research Grant Awards. Through the generous contributions of its supporters, the Foundation was able to fund eight promising research projects. Executive Director Christopher E. Hahn reports that this is 60 percent more than the organization funded in 2008, when the Foundation, along with many charitable endeavors were beset by budget cuts resulting from the tough economic climate. In an email to Meso Foundation supporters, Hahn said he is hopeful the organization will soon be able to return to its target goal of funding 10 mesothelioma research projects per year.

Projects funded by the 2009 Grant Awards include vaccine studies offering hope of targeted treatment without drastic side effects; a novel investigation of the role of hormones in mesothelioma treatment; developing pathway targets synergistic with current first-line therapy Alimta/Cisplatin; and a study specifically focusing on improved detection and treatment of peritoneal mesothelioma (affecting the lining of the abdomen). Visit the Meso Foundation online for details of each study.

Each year, the Mesothelioma Applied Research Foundation funds critically needed research to develop more effective treatments and ultimately, a cure. The Foundation has provided more than $6 million in grant funding, advancing mesothelioma science through promising studies around the world. The Meso Foundation’s funding objectives are to directly fund basic research and support clinical trials in worthy, peer-reviewed projects as well as to stimulate additional federal research funding opportunities.

The Mesothelioma Applied Research Foundation is a nonprofit collaboration of patients and families, physicians, advocates, and researchers dedicated to eradicating the life-ending and vicious effects of mesothelioma.

You can help! There are many ways to get involved with the Mesothelioma Applied Research Foundation. These include signing up to receive and respond to Action Alerts, which are specific campaigns for particular aspects of mesothelioma advocacy efforts; visiting your government officials to lobby for mesothelioma funding and awareness; volunteering in the meso community both locally and nationally; education; sharing your meso story; and donating to mesothelioma research.

For more information or to make a donation, visit the How You Can Help page at www.curemeso.org. The Meso Foundation is the recipient of the Charity Navigator “Four Star Charity” award and is recognized as the 2009 Great Nonprofits winner in the category of Cancer Fighters.

There is an ongoing debate in the United Kingdom about whether the country’s Labour department is responsible for compensating workers suffering from pleural plaques. In 2007, the Law Lords ruled that pleural plaques did not qualify for worker’s compensation. Pleural plaques are areas of fibrosis, or scar tissue caused by exposure to asbestos. They are usually found on the inside of the diaphragm.

A champion for the rights of workers who have developed pleural plaques as a result of exposure to asbestos in the workplace is Jarrow MP Stephen Hepburn. In a meeting at the House of Commons on Nov. 27, he argued the issue of pleural plaques is “immensely important” to workers and pensioners, and insisted it is the duty of members of both sides of the House to overturn the “disgraceful and unjust decision by the Law Lords to bar this terrible illness from classification as a designated illness for compensation purposes,” according to a report in The Chronicle.

Hepburn also told the Commons that pleural plaques sufferers are 1,000 times more likely to develop a more serious form of asbestos-related cancer. Mesothelioma is a deadly form of cancer that affects the lining of the chest cavity and lungs (pleural) or the lining of the stomach (peritoneal). It may also rarely affect the lining of the heart (pericardial). There is no known cure for mesothelioma.

During the heated debate, The Daily Mirror reports that statistics were revealed that show mesothelioma rates in the UK have nearly doubled in 10 years. According to the news source, hospitals treated 7,349 cases of mesothelioma in the past year, compared to 3,773 cases during the timeframe of 1998-99. The Mirror calls mesothelioma an “asbestos timebomb,” citing the disease’s long latency period.

The Mirror quotes Hepburn as saying, “We’re seeing the legacy of workers exposed to asbestos in the 1960s.”

There are tons of new educational, outreach and awareness materials now available from the Mesothelioma Applied Research Foundation. If you do not already subscribe, the latest issue of the Foundation’s “Breath of Hope” newsletter is available. The latest issue provides a recap of activities during the International Symposium on Malignant Mesothelioma, which was held in Washington, D.C., in June. The newsletter includes photos from the event and a wealth of information about research and advocacy, as well as personal stories from mesothelioma patients and their families and caregivers.

This issue is available to download online. If you are having trouble downloading the newsletter, or just want an original hard copy, please let me know. I have some extra copies of the newsletter graciously provided to me by the Meso Foundation that I would be happy to send to you. You can also subscribe by visiting the Meso Foundation online at www.curemeso.org. There also is an archive of past newsletters on the site.

Another exciting resource available at the Meso Foundation web site is a video library of presentations from the Symposium. There were so many great speakers, and this is a truly valuable resource for excellent educational information. The video library also provides access to the slides used by conference speakers. There really is a fantastic amount of information here on topics ranging from Advocacy & Advancing the Mission, to Integrative Medicine, Nutrition, Cancer and the Immune System, Peritoneal Mesothelioma, Pleural Mesothelioma, Clinical Trials and much more.

While on the Meso Foundation web site, please join their online Mesothelioma Community, which will allow you to exchange information with others through a Bulletin Board, as well as read a number of blogs touching on a wide variety of topics. You can also subscribe to an e-newsletter that will keep you informed about all the great work the Meso Foundation is accomplishing in its mission to find a cure for mesothelioma.

If you have any questions or need assistance, you may call the Meso Foundation at (805) 456-7272 or call them toll-free at 877-END-MESO.

Last week I shared the story of Shanna Kurtz, a 30-year-old woman in Texas who was diagnosed with peritoneal mesothelioma in 1999. She is battling the disease, and recently underwent a surgery to remove some tumors from her abdomen and her liver. She was in the hospital in Washington, DC, for more than a month before finally returning home on May 7.

Shortly after her return, abdominal pain sent her back to the hospital. She was good enough to email me to let me know she had suffered from a condition called illeus, which is when the intestines become paralyzed. She stayed in the hospital in Texas for a few days until finally coming home again on May 13. She said she’s focusing on getting stronger and gaining weight, but is frustrated by the  setback after all her hard work to recover from her surgery.

You can check in on Shanna’s progress by reading her journal on the CaringBridge web site and email her some encouraging words at goddesslorraine@aol.com. I know she’d really appreciate hearing from some folks in the meso community!

There was a fundraiser in her honor last weekend, and there’s an ongoing effort in Texas called “Cooking for the Cure” to help raise money for Shanna’s treatments.  Cheri Travis, who is one of the organizers of Cooking for the Cure, reports Shanna is scheduled for another surgery in August, so fund raising efforts continue.

Cooking for a Cure was started by Cheri and two other friends who like cooking, and wanted to use their interests and talents in the kitchen to raise money for Shanna. They gather at one person’s house and prepare food, which they distribute in exchange for donations.

“It’s really spread by word of mouth of people who buy our food,” Cheri explained in an email to me. “Plus, we have fun doing it and helping raise funds for our friend.”

The group is based near Victoria, Texas, so if you live in that area, check out this unique project!

Cheri said there also is another fund raising benefit in Shanna’s honor planned for September 18 in Victoria. I’ll let you know the details when I have them.

In the meantime, if you live near Victoria and would like to purchase food from Cooking for the Cure, you can email Cheri at cetfrog@gmail.com.

Or, if you would still like to make a donation to help with Shanna’s treatment, you can send it to:

Cooking for the Cure
17114 Eagle Hollow Drive
San Antonio, TX 78248

Today I came across the story of a courageous young woman in Texas who is battling peritoneal mesothelioma, an extremely rare form of the cancer that affects the lining of the abdomen. More common is pleural mesothelioma, which affects the lining of the lungs.

Shanna Kurtz was diagnosed in 1999, at age 20, after suffering from several years of unexplained abdominal pain. Doctors who originally suspected a fibrosis tumor discovered a grapefruit-sized tumor in her abdomen, which was diagnosed as peritoneal mesothelioma.

Shanna’s journal on CaringBridge.org documents her experiences through the last several years as she has fought to keep this cancer at bay. It is heartbreaking to read about someone so young who has to face this experience. In one journal entry from October 2008, she reflects on how it feels when people tell her how strong she is, when she doesn’t have any other choice. She states frankly that she is jealous of people who have the option to choose what they will do with their lives, and reflects on so many doors that are closed to her.

Despite the inevitable depression, Shanna is remarkable. Upon her diagnosis told her only about 20 percent of patients survive beyond a couple of years. Determined to be in that 20 percent, she is beating the odds.

Most recently, Shanna’s journal chronicles a surgery on March 26 in Washington, DC, at the Center for Surgical Oncology at the Washington Cancer Institute, Washington Hospital Center.  Dr. Paul Sugarbaker removed a number of tumors, including one that had covered part of her liver. Following the surgery, the doctor filled her abdomen with chemotherapy medication in a process called postoperative intraperitoneal chemotherapy. The solution comes into contact with areas the tumor has touched, in an effort to erradicate those cells and prevent recurrance.

Shanna was in the hospital for a little over a month, finally returning home to Cuero, Texas, on May 7.

This weekend, there will be a benefit in her honor, to help offset the medical expenses of the surgery. The event will feature a bike ride and barbecue. The bike ride will leave from Grace Lutheran Church in Victoria, Texas, on Saturday, May 16, at 2 p.m., and will be followed by an evening of dancing, an auction, food and music, which will start around 4 p.m. at Lindenau Dance Hall, which is about 33 miles from Victoria. Cost to participate is $30.

If you are in the area, please attend this event!

In addition to the weekend event, there is an ongoing project called “Cooking for the Cure,” in which three friends prepare food in exchange for a donation to help Shanna. In its first month, the project raised more than $1,100.

For more information about Cooking for the Cure or the Shanna Kurtz Benefit Barbecue, or to make a donation to help Shanna, contact Cheri Travis at cetfrog@gmail.com.

Results at the completion of a Phase II trial researching the treatment of peritoneal mesothelioma indicate a combination of the drugs Alimta (pemetraxed) and Gemzar (gemcitabine) is effective in increasing survival time and controlling disease progression. The findings were published in the July 2008 issue of the Journal of Clinical Oncology and reported by Cancer Consultants, Inc.

According to the report, the study involved 20 patients treated between 2002 and 2004 who received Alimta and Gemzar every 21 days, along with folic acid, vitamin B12 and dexamethasone. Cancer Consultants reports overall response rate was 15 percent, disease control rate was 50 percent, median time to disease progression was 10.4 months and the median survival time was 26.8 months. Additionally, the report notes that toxicities were tolerable.

Cancer Consultants notes that peritoneal mesothelioma makes up less than 20 percent of all cases of mesothelioma, with pleural mesothelioma being more common. Peritoneal mesothelioma is a specific form of mesothelioma that affects the peritoneum, which is the serous membrane that forms the lining of the abdominal cavity.

Pleural mesothelioma is the most common form of the disease, making up about 75 percent of all cases. Pleural mesothelioma affects the outer lining of the lungs and chest cavity.

Because of its relative rarity, there have been few studies of chemotherapy as a treatment for peritoneal mesothelioma, and there are no controlled trials of various treatment options available for peritoneal mesothelioma.

Traditional therapy for peritoneal mesothelioma has involved surgical debulking followed by systemic and/or intraperitoneal chemotherapy.

Cancer Consultants, which delivers educational programs and resources to more than 18 million targeted seekers of cancer information, has been producing and distributing cancer information for patients and professionals since 1998.

The publication notes that this study is one of the first devoted to systemic chemotherapy treatment for peritoneal mesothelioma and as such provides an important baseline for research.

A young woman believed to be Britain’s youngest mesothelioma patient, at age 28, passed away last week, just two years after her diagnosis, according to a story in the Daily Mail. Leigh Carlisle, who grew up in Manchester, had peritoneal mesothelioma, affecting the lining of the abdomen.

Because of its long latency period – from 20 up to 50 years – mesothelioma usually occurs in older people, age 50 and older. For that reason, Carlisle’s mesothelioma eluded diagnosis early on, with doctors mistaking her symptoms for ailments such as irritable bowel syndrome (IBS), pelvic infection and endometriosis. Doctors were stunned when they diagnosed peritoneal mesothelioma.

Because of her young age, researchers believe Carlisle may have come in contact with asbestos – the only known cause of mesothelioma – in her school, or possibly from a factory yard near her childhood home, which she used as a shortcut on her way to school each day. Asbestos sheets were cut at the yard.

According to the report, about 2,000 people in Britain die from mesothelioma each year, a figure that has doubled since 1992. The paper reports that 90,000 people in the UK will die from the disease, and another 90,000 from other asbestos-related lung diseases.

Additionally, the report says about 200 school workers have died or are suffering from illnesses related to asbestos exposure in schools in Britain, where it is estimated that about 13,000 schools still contain asbestos.

Following her diagnosis, Carlisle worked for mesothelioma and asbestos awareness. Her family requests that donations in her memory be made to the Oldham Cancer Support Centre in Failsworth:

Oldham Cancer Support Centre
Failsworth Primary Care Centre
Ashton Road West
Failsworth
M35 0AD
Tel: 0161 906 2940

The Mesothelioma Applied Research Foundation (MARF) will hold its International Symposium on Malignant Mesothelioma 2008 in Washington, D.C., June 26-28. The annual event highlights the latest advances in research and treatment for patients and caregivers, offers psychosocial support to them as well as those who have lost someone to the disease, and provides significant advocacy and volunteer opportunities for those who are intent on eradicating mesothelioma.

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.”

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.

There’s an interesting article just posted to Reuters Health that reports a new study indicates risk of asbestos-related cancer decreases after asbestos exposure ends.

However, down at the end of the article, you learn that risk begins to drop FIFTY YEARS after exposure ends. The report also says that it looks like men have the highest risk of developing lung cancer 30-39 years after exposure, and women are at highest risk 20-29 years after exposure. Then risk begins to drop. Begins.

The decline refers to pleural mesothelioma. The report says that the risks for peritoneal mesothelioma continue to rise, even 40 years after exposure has ended.

It’s a puzzling article, since it SOUNDS like good news, but then as you read along it doesn’t really sound all that great.

Check it out here.