• Military veterans (especially the U.S. Navy) 
• Construction workers Demolition or renovation crews Auto mechanics 
• Insulators Shipyard workers 
• Asbestos mine workers or millers Boiler workers 
• Asbestos manufacturing plant workers 

• Contact your city council and ask what needs to be done in order to get a proclamation declaring September 26 as Mesothelioma Awareness Day 
• Contact your state governor’s office and ask for a permanent State resolution 
• Contact House representatives and senators in your state to ask for national recognition 
• Contact local media about proclamations and ask them to help raise awareness 
• Get the word out by presenting the proclamation to surrounding communities 

• 4 out of 10 mesothelioma patients survive more than one year past diagnosis 

• 2 out of 10 mesothelioma patients survive more than two years past diagnosis

• 1 out of 10 mesothelioma patients survive more than three years past diagnosis 

• 8 out of 100 mesothelioma patients survive more than five years past diagnosis 

Reuters is reporting a new blood test that could identify mesothelioma at an early stage. The biotech company Somalogic, which specializes in developing diagnostic tests, announced a new technology that could allow doctors to identify mesothelioma in patients before they show visible symptoms.

Somalogic scientists used blood samples from mesothelioma patients and were able to develop aptameters (oligonucleic acid or peptide molecules) that bind to proteins expressed by mesothelioma cells. These biomarkers are present in the blood at extremely low concentrations, so conventional chemical analysis cannot find them.

The use of proteomics array technology and genetic material specific to the protein allows discovery of the disease early in its development. According to HealthDay News, Somalogic scientists identified 19 biomarkers for mesothelioma. They found a specificity of 100% for those markets. Sensitivity was 80%. If these numbers hold through further development, the diagnostic process would be able to identify the large majority of mesothelioma cases with some false positives.

If this technology proves reliable it could be used in a screening process for people with a history of asbestos exposure. Asbestos is known to cause mesothelioma, but the latency period is very long and the symptoms often don’t manifest until the disease has progressed to a point at which treatment options are limited. Early discovery of mesothelioma would give doctors and patients more options and improve the prognosis of those afflicted with this cancer. 

Read more at:
http://www.doctorslounge.com/index.php/news/pb/14384

http://www.reuters.com/article/idUSTRE68R5T220100928 http://www.eurekalert.org/pub_releases/2010-09/aafc-nbd092110.php

Whether dealing with skin cancer, lung cancer or mesothelioma, dealing with the uncertainty of this disease can be terrible. Even if you are in remission from your cancer, there is always the uncertainty of whether or not it will ever come back. Knowing that your cancer might appear again in your body can be extremely terrifying. However, it is important not to focus entirely on what may or may not happen. You have to learn ways to deal with the uncertainty of cancer so that you can live a normal and healthy life. Here are five ways that can help you deal with the uncertainty of cancer. Dealing with the uncertainty of cancer can leave you feeling very stressed, so you have to learn some relaxation techniques to calm yourself down. For example, you can practice deep breathing exercises. When you are in a quiet room, breathe in very deeply and fill your stomach with air. Then, slowly let the air out by exhaling. Doing deep breathing exercises should help relax you. It is a good idea to eat a healthy diet. Eating a balanced diet will not only help you feel better; it will also improve your health and may prevent certain cancers from coming back. For example, breast cancer is more likely to reoccur in women who are obese and do not consume many fruits and vegetables. Make sure to fill your diet with vegetables, fruits, whole grains, lean meats and low-fat dairy products. Try to limit your consumption of junk foods like pizza, chips and cake. Although exercising is not proven to prevent or cure cancer, it can still reduce your anxiety, improve your mood and reduce symptoms of nausea, fatigue and pain. Try to exercise for 30 minutes each day. Do activities you enjoy like walking, biking or yoga. If you start to feel tired or weak as you are exercising, you should stop until you feel better. There is no shame in seeking therapy if you are worried about your cancer. Talking to a professional counselor can help you express your feelings and learn how to cope with your anxiety. A counselor can help you gain control of your life and teach you different ways to deal with your cancer. You can also consider going to a support group meeting so that you can be around others who know how you feel. It is important to get enough rest at night. Allowing your body to sleep at least eight hours each night will help you recover from stressful events so that you feel better. Dealing with cancer will not always be easy, but it does not have to make your life miserable. If you follow these tips, you will feel better about yourself and worry less about the uncertainty of cancer.

The G. R. Little Theatre and the north and south wings of the G.R. Little Library on the campus of Elizabeth City State University in Elizabeth City, NC, are closed until mid-April while crews remove asbestos from the facilities. According to a report by staff writer Kristin Pitts, which appears in the Daily Advance, the asbestos removal is part of a planned renovation that will make the existing facilities more energy efficient. The university is in compliance with U.S. Environmental Protection Agency (EPA) guidelines for safe asbestos removal.

According to the news report, university spokeswoman Kesha Williams says that other ECSU buildings could potentially contain asbestos, as the material was commonly used in construction prior to the 1970s. However, the material is generally not dangerous unless it is disturbed. The university was proactive in securing an asbestos abatement company to safely remove the existing asbestos during its remodeling of the library and theatre buildings.

During processes like remodeling and demolition, materials containing asbestos may release microscopic fibers that can be inhaled into the lungs. Inhaled asbestos fibers may cause asbestosis, a severe scarring of the lungs, or mesothelioma, a deadly cancer that may affect the lining of the chest and lungs, the abdomen, or, more rarely, the heart.

The news report says Clean Air Environmental, Inc., a Winston-Salem based company, has been contracted to remove the asbestos from the library and theatre buildings. Project manager Omar Martinez told the paper that the company is currently completing the second phase of what it expects will be a three-part asbestos removal process. He told the reporter that the company is using “negative airs and amended water to capture any [asbestos] fibers” and workers double-bag hazardous materials and properly dispose of the hazardous waste to ensure the safety of workers, students and others on campus in the area of the project.

Energy-saving equipment planned for the library and theatre buildings include new lighting fixtures and an upgraded heating, ventilation and air conditioning unit.
Tags: asbestos, asbestos abatement, asbestos fibers, asbestos removal, asbestosis, Clean Air Environmental, Elizabeth City State University, EPA, Inc., mesothelioma, North Carolina, U.S. Environmental Protection Agency
This entry was posted on Tuesday, March 2nd, 2010 at 12:49 pm and is filed under Events, News. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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It has been a difficult year for many in the mesothelioma family. Many have lost loved ones, or are facing a scary diagnosis. But 2009 also held a lot of good news. To illustrate that, I’d like to share a news article about our great friend in the UK, Debbie Brewer. Just after Christmas, Debbie was featured on the front page of The Herald
, a newspaper that covers the Plymouth area. The paper describes Plymouth as a “hotspot for asbestos-related deaths.”
In the feature, Debbie talks about how she moved from what was presented to her as a death sentence to her new outlook of happiness, hope and survival. Debbie was diagnosed in November 2006, at which time she thought she might be seeing her last Christmas. Doctors estimated she had only six to nine months to live.

As most of you know, Debbie refused to accept the prognosis that she had only months to live, instead actively seeking alternative medical treatments that might take a fresh look at her cancer and provide her with new options. Primarily, she found Prof. Thomas Vogl at the University Clinic in Frankfurt, Germany, who administers a therapy called chemoembolization. In this therapy, chemotherapy drugs are introduced directly to the tumor area through a catheter into the lung.

Because the treatment is still in clinical trial stages, Debbie had to travel to Germany for each treatment, not available in the UK, and paid for travel expenses and medical care from her own pocket. However, results were amazing, and Debbie’s tumor shrunk by more than 80 percent, putting her in full remission.

Despite a recent setback, when a September check-up showed cancer in her lymph node had increased in size (the tumor in her lung remains stable), she is optimistic. She lobbies energetically for mesothelioma and asbestos awareness, and also to bring chemoembolization to the UK so that more people might try this new therapy that has shown so much success in her case.

The paper quotes Debbie as saying, “Christmas is the time of year I celebrate being here. ”

We love you, Debbie, and we are SO glad to celebrate another Christmas with you, and we look forward to spending 2010 with you!

Read the full article.
Tags: asbestos, chemoembolization, Debbie Brewer, Germany, mesothelioma, Prof. Thomas Vogl, UK, University Clinic, Vogl
This entry was posted on Thursday, December 31st, 2009 at 7:00 am and is filed under News, People. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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The Asbestos Disease Awareness Organization (ADAO) is asking the public to help give a voice to efforts to ensure a safe and healthy workplace. Simply go online to vote that an article titled “Ensure all jobs are healthy jobs” by Michael Kalmus Eliasz should be presented to the upcoming United Nations Rio+20 Conference on Sustainable Development, scheduled to take place June 20-22 in Rio de Janeiro.

The healthy jobs initiative fits in with ADAO’s mission to ensure safe workplaces by calling for a complete ban on asbestos. Asbestos was used for decades in industry as a fireproofing material. Tiny asbestos fibers can be inhaled and ingested, resulting in the development of asbestos diseases including mesothelioma, which is a deadly cancer affecting the lining of the lungs, abdomen and, more rarely, the heart. There is no known cure for mesothelioma.

If the article about healthy jobs receives the most votes online, it will be presented to heads of state at the U.N. conference. The article, prepared by the International Association of Medical Students, quotes statistics from the International Labor Organization (ILO) that cite more than 2.34 million deaths from work-related diseases in 2008. It calls for the “integration of health assessments into strategies for job creation … in particular identifying health risks among both formal and informal workers across the supply chain and acting to mitigate these risks.”

You can read more of the paper, and find instructions to register and vote by visiting the ADAO online. The deadline for voting is JUNE 3, so please support this effort by voting today!
Tags: ADAO, asbestos, asbestos disease, Asbestos Disease Awareness Organization, mesothelioma, United Nations, workplace safety
This entry was posted on Thursday, May 31st, 2012 at 10:05 am and is filed under Events, Organizations. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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Among the many wonderful speakers at the 2009 International Symposium on Malignant Mesothelioma, presented by the Mesothelioma Applied Research Foundation in June, was Dr. Jill Ohar of Wake Forest University. She has been researching mesothelioma and other asbestos diseases for more than 20 years, and currently is heading a study to determine if there could be a genetic predisposition between asbestos exposure and the development of mesothelioma.

Dr. Ohar told conference attendees that her goal is to try to discover why some people may be exposed to asbestos and never develop any type of asbestos disease, while others may develop asbestosis, lung cancer or mesothelioma. She had already collected blood samples and DNA from 6,000 people exposed to asbestos for an epidemiologic study. Of that number, she said, 250 people developed mesothelioma.

“What is different in those people?” she wondered.

The next phase of the study is a genome study involving the 250 patients who did develop mesothelioma. In addition, Dr. Ohar is seeking additional participants.

A news release on Oct. 5 announced that FirstHealth of the Carolinas, a comprehensive health care network serving 15 counties in the mid-Carolinas, will partner with the Wake Forest School of Medicine to encourage participation in the study, which is investigating the development and progression of asbestos-related lung diseases and cancers. The FirstHealth Clinical Trials Department will work on this project.

Dr. Ohar is the study’s principal investigator. In the news release she says, “Families have been devastated by this disease, but what is surprising is that despite the strong association of asbestos exposure to mesothelioma, only a small number of people exposed to asbestos actually develop mesothelioma. Over years of research, we have determined that there is a strong tendency for mesothelioma to run in families and it tends to be associated with a family history of cancer, which suggests a genetic susceptibility.”

The mesothelioma study requires the collection of one ounce of blood from the participant and the completion of a tw0-page survey, both to be conducted at FirstHealth Moore Regional Hospital’s Chest Center of the Carolinas.

The study will examine associated environmental factors and genetic markers of people diagnosed with mesothelioma, basically identifying how frequently encountered environmental pollutants affect the body and determining the genetic factors that make some families more susceptible than others to mesothelioma and other forms of cancer.

If you or a a friend or family member has been diagnosed with mesothelioma and are interested in participating in this study or have questions, please call FirstHealth Clinical Trials at 910-715-2200 or Dr. Jill Ohar at 866-487-2344 or 336-716-8426.


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Variety magazine, famous for entertainment reporting, announced this week that famed columnist Army Archerd will be honored posthumously by the Asbestos Disease Awareness Organization (ADOA) at its Sixth Annual International Asbestos Conference on April 10 in Chicago. Archerd will receive the organization’s inaugural Warren Zevon Keep Me in Your Heart memorial tribute.
The award was established in memory of singer-songwriter Warren Zevon, author of such hits as “Werewolves of London,” who died of mesothelioma in 2003. Mesothelioma is a deadly form of cancer that is linked to asbestos exposure. It most often affects the lining of the chest and lungs, but may also affect the lining of the abdomen or, more rarely, the heart.

Warren Zevon’s son, Jordan Zevon, is involved with ADAO as its spokesman. Variety quotes him as saying, “My father would be enormously honored to have had the opportunity to pay tribute to Army Archerd.”

Archerd was a columnist for Variety
for more than 50 years, penning his “Just for Variety” column until September 2005. Even after he retired the famous column, Archerd worked as a blogger for Variety. He was one of the most popular and well-respected writers in the entertainment industry, and broke many exclusive stories. He died of mesothelioma on Sept. 8, 2009. It is believed he was exposed to asbestos during his service in the Navy during World War II.
Variety quotes his widow, Selma, as saying, “The tragedy of asbestos disease is a story that unfortunately continues to be written for many families. I hope that Army’s legend of making a difference through his work can help give an even louder voice to the efforts to write its end.”

ADAO was founded by asbestos victims and their families in 2004. It seeks to give asbestos victims and concerned citizens a united voice to raise public awareness about the dangers of asbestos exposure. ADAO’s mission includes supporting global advocacy and advancing asbestos awareness, prevention, early detection, treatment, and resources for asbestos-related disease.

For more information about ADAO or the annual Asbestos Conference, visit ADAO online at www.asbestosdiseaseawareness.org.
Tags: Army Archerd, asbestos, Asbestos Disease Awareness Organization, Chicago, International Asbestos Conference, Jordan Zevon, Keep Me in Your Heart, mesothelioma, Variety, Warren Zevon
This entry was posted on Friday, March 5th, 2010 at 10:56 am and is filed under News. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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 We spoke to clinical psychologist, Dr. Ramani Durvasula, about the ways a family can stay strong when a cancer diagnosis happens. Here is what she had to say:
1. Understanding Levels of Grief
There are multiple levels of grief and anger. These are going to vary developmentally and experientially across the family. The patient will be facing one set of issues, the spouse/partner one set, children are quite complicated as it depends on age - grown children who live outside the house are quite different than young children who will be dealing with very different issues. So a key is to work with the oncology team, which hopefully has a social worker to not just make this all about the person with cancer, but all members of the family and to ensure that you have access to referrals, support, and information that is appropriate at all levels of the family.

2. Be Organized
Medical appointments, records, insurance, medications require organization - and this may require assistance with housework, healthy members of the family ensuring that things are in their place and running smoothly.

3. Retain Some Normalcy
Don't turn the home into a satellite hospital -have dinner together, play board games, do the things you do together, and really bring some value to that time.

4. Turn to Spiritual Resources
Recognizing that every family relies on this differentially - some are nonbelievers, some will need their parish/temple/mosque community. If it feels ok - turn to leaders in your religious community as a family if that feels right.

5. Talk and Listen
Denial is a normal phase of mourning - but can be scary for those who do want to talk. It may feel hard, but give each other that time, and if needed bring in the professionals and turn to licensed mental health professionals who have expertise in working with patients with cancer and their families.

6. Keep Everyone In The Loop
This can be very important if a family is scattered across the country. Some families may do this via email, some families may do Skype calls together, some families may even have private websites to post test results to. Each family knows what is comfortable -but the less they have to hassle the patient but keep abreast, it may be helpful for all concerned, and address those feelings of helplessness that are all to common in family members of a person with cancer.

7. Choose a Family "Go-To"
Some families have that person who makes a good "spokesperson" and can stand the litany of questions, well wishes and insensitive comments. If outsiders know there is somewhere they can go to get information and offer their words, sometimes this can shield the family from lots of excess nonsense they don't want to deal with at that time.

Every family is different, and ultimately should be working with a social worker or other mental health worker that is typically part of a good oncology team to devise strategies that are best for them.

Dr. Ramani is a licensed clinical psychologist and Professor of Psychology. Drawing upon her years of clinical experience, graduate and undergraduate teaching, and published research - she is masterful at taking all things psychological and making them interesting and understandable for a wide variety of audiences. Her versatility makes her a useful presenter for audiences ranging from adolescents to professionals, laypeople to mental health professionals.

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An amazing original report by The Daily Show, the popular news commentary and comedy show hosted by Jon Stewart on Comedy Central, shines a spotlight on Canada’s continued mining and exporting of asbestos. Reporter Aasif Mandvi visited a small Quebec town called – believe it or not – Asbestos. There, he talked to town officials, asbestos industry leaders and a health expert about asbestos. A local business leader says when the mine is up to full production, they intend to produce 200,000 tons of chrysotile fibers per year. They export this asbestos to India, which does not have any laws against its use and does not monitor its use.
Asbestos, of course, has been shown to cause lung cancer, particularly deadly pleural mesothelioma, which affects the lining of the lungs. Asbestos also can affect the lining of the abdomen, causing peritoneal mesothelioma. Although some people diagnosed with mesothelioma are having success with radical or experimental treatments, there is as of yet no known cure for the disease.
Watch The Daily Show segment, titled “Ored to Death.”
Thank you to the Asbestos Disease Awareness Organization (ADAO) for letting us know about this coverage!
More information:
Canadian Crossing
Tags: asbestos, mesotheliomaThis entry was posted on Friday, May 13th, 2011 at 12:27 pm and is filed under News. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
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It was Cheryl Cotton’s third time attending the Mesothelioma Applied Research Foundation’s annual International Symposium on Malignant Mesothelioma when I met her this past June. We were both seated in the hotel lobby, waiting for a bus to take us to Capitol Hill, where we would ask our legislators to support a complete ban of asbestos and for funding for mesothelioma research.

I think it was Cheryl who introduced herself first, and I was delighted to hear she was from my home state, Alabama, about two and a half hours north of Montgomery, in Anniston. When I told her I was from Montgomery, she was ecstatic to finally find someone with a meso connection in her home state.

Cheryl lost her husband, Virgil, to mesothelioma on May 31, 2005, just two days after their 40th wedding anniversary. She began attending the Meso Foundation conference almost immediately, urgently needing to connect with others who might understand what she was going through, and to make sense of a disease that took her best friend and love of her life before either of them fully realized what was happening.

Virgil first began to notice something was wrong in late March 2004, when he had a severe pain in his side. His hobby was restoring vintage automobiles, and he had been working on a friend’s car, so he thought he had possibly just bruised a muscle while working. But shortly after that he developed a terrible cough.

“It was a whole-body cough,” Cheryl recalls. “Like from head to toe.”

Virgil went to see his doctor, who thought the cough might be related to a drug he was taking following a heart catheterization, which he’d had earlier that year.

“The doctor said it would take 60 days or so to get the drug out of his system, so basically for two months we did nothing,” Cheryl says. “The pain in his side persisted, and the cough got worse. Right up until this time, after his heart problems, he had been dedicated to cardiovascular exercise and eating right. He was probably in the best shape he’d been in for years. He would actually get onto to me about exercising more and eating right,” she recalls with a laugh before turning sober again. “So this was just odd. He kept feeling sicker and sicker.”

He went back to the doctor, thinking maybe there was something wrong with his heart. Tests showed his heart was fine, and doctors sent him home and told him to just continue to exercise and eat right.

But Virgil began having trouble breathing. It was September by now. He visited the doctor again, and was referred to a pulmonary specialist for a thoracentesis. They found fluid in his lungs, but tests came back negative for cancer or any type of infection. But the fluid came back almost immediately.

Cheryl was getting really worried.

“He was used to being active, but now he could hardly get around. He had no energy,” she remembers. “We had requested referrals to see some doctors in Birmingham, because he was dying in front of me. I knew there was something more going on, and I couldn’t understand why nobody could tell us. We had two more thoracenteses and still no diagnosis. The local doctors said they didn’t know what was wrong with him.”

At this point, Cheryl decided to call Birmingham, and talked to a nurse at UAB Medical Center. She got a referral for a pulmonary specialist, and made an appointment for Virgil the following week. But when they got to see the doctor, he said Virgil actually should see a thoracic surgeon, and gave them another referral. They gathered all Virgil’s test results and visited the thoracic surgeon on December 14. An initial theory was that Virgil might have a collapsed lung and scar tissue.

“Virgil had really gone downhill,” Cheryl said. “He was aging. Things had fallen apart in nine months, since the first symptoms.”

Doctors decided to do a thoractomy, but because it was Christmastime, they decided to wait until January, telling Virgil and Cheryl to go home and enjoy the holidays with their family. He finally had the surgery Jan. 4, and they first heard the word mesothelioma. But the diagnosis still wasn’t definite until about 10 days later.

“At that point it was stage 2+ or 3-. It was already advanced. We were referred to a doctor for chemotherapy, but still nobody was really telling us much about what this diagnosis meant. We had no idea.”

Virgil underwent a series of chemotherapy treatments, and then on April 20 began receiving radiation at a cancer center in Birmingham.

“By then, his breathing had deteriorated and they’d put him on oxygen,” Cheryl said. “He’d really not been able to lie flat since September. He had to prop up in a recliner or on a pallet on the floor.”

On May 19, a Thursday morning, Virgil woke Cheryl and told her something was wrong and that he felt he needed to go to the hospital. They went to UAB. On May 21, the doctor came in and told them Virgil was not improving, and that he didn’t have long to live. She estimated two and half to three months, and advised them to get their affairs in order.

“This was the first time anyone really talked to us about dying. Everyone was telling us he had time, that there was all this time.”

They called in Hospice care, and their daughter, Pam, came to visit, bringing their grandson and making a video of Virgil and the boy. On May 30, Virgil began doing worse, and passed away the next day. This was just nine days after they’d first been told that Virgil’s condition was terminal, and about 15 months since his first symptoms.

Cheryl was in shock. “He was 60 years old and had been in prime health,” she says. “When he died, he looked like he was 90. I didn’t even realize how bad he looked because I guess I saw him every day. Months later, I watched the video Pam had made just before he died, and then I really saw it.”

Virgil’s illness had been such a whirlwind; Cheryl wasn’t quite sure what to do after his death. She still couldn’t quite believe it had even happened. She was angry, that Virgil went so long with no diagnosis and no treatment. She felt guilty, like she ought to have somehow known more, or done more. And she felt alone.

Some time after Virgil was diagnosed with mesothelioma, Cheryl found the Mesothelioma Applied Research Foundation, a non-profit organization dedicated to the elimination of mesothelioma through outreach, education and funding research efforts to find a cure. She also connected with Sue Vento, the widow of Sen. Bruce Vento of Minnesota, after whom the pending “Bruce Vento Ban Asbestos and Prevent Mesothelioma” legislation before the U.S. Congress was named.

“She emailed me and I think called me, too,” Cheryl says. “She sent me a book on meso as well. She was the calm in the middle of my storm, and has kept in touch with me during this time via emails.”

Following Virgil’s death, Cheryl decided to attend the Meso Foundation’s annual International Symposium on Malignant Mesothelioma, and packed her bags for the trip to Washington, D.C. Many of her friends couldn’t understand it, but she says it was something she had to do.

“I somehow found MARF and the main reason I went to the conference that first year was to have someone to share this pain, and try to come to some conclusions,” she said. “You feel like you didn’t do something you should have. We had never heard of the word until they told us the diagnosis.

“I really felt like … when you lose your husband, who had been my friend, before he was my sweetheart – we’d known each other since we were 12. I felt if there was some way I could reach out to someone else it would help me as much as maybe I could help them. I felt there was that need in my heart, to find out as much as I could about the disease,” Cheryl says. “It was wonderful to know that people were surviving. But it makes me angry that Virgil didn’t have a chance.”

She had a chance to meet her “rock,” Sue Vento, at that first conference as well. Since that time, Cheryl has attended the Symposium for three years in a row, where she is active, joining others in visiting Capitol Hill to ask Congress to ban asbestos, and to fund mesothelioma research. She is also active in her community, talking to people about the dangers of asbestos exposure and about mesothelioma. She takes brochures about mesothelioma to doctors’ offices, hoping to increase knowledge among the medical community, hoping that someone else may be diagnosed early enough for treatment.

“Now I have contact with more people who are battling mesothelioma, and I learn that most people also have never heard of it. At the time, you just have to hang in there, and you can fall apart later. So I try to connect and just try to help someone, to let them know that someone is there who understands what they are going through. And it helps me too,” she says.

“I share my story every chance I get. I wear an awareness pin. People need to know asbestos is out there and it’s killing people.”

Outreach is hard. Every time she shares Virgil’s story, the pain is fresh again. But Cheryl is determined, and she’s willing.

“Mesothelioma patients and their families are victims,” Cheryl says. “They are victims of asbestos. And all of this COULD and SHOULD have been avoided!”
Tags: Alabama, asbestos, Birmingham, Bruce Vento, Bruce Vento Ban Asbestos and Prevent Mesothelioma Act o, Cheryl Cotton, International Symposium on Malignant Mesothelioma, mesothelioma, Mesothelioma Applied Research Foundation, Mesothelioma Awareness Day, Minnesota, Montgomery, Sue Vento, Virgil Cotton, Washington
This entry was posted on Thursday, September 24th, 2009 at 9:10 am and is filed under Events, News, People. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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Today I heard from Debbie Brewer, our friend in the UK. She is just returned from another visit to Dr. Thomas Vogl in Germany, where she had wonderful success with the clinical trial for chemoembolization. She first visited Vogl for the treatment in May 2008. In March 2009, she found that her tumor had shrunk an amazing 73 percent since her first treatment. This week, she reports that even Dr. Vogl was surprised to see that Theo – as she nicknamed the tumor – had shrunk an additional 10 percent! That’s a total reduction of 83 PERCENT for those of you keeping score!

This is truly wonderful and amazing news, particularly for a cancer like mesothelioma, which has no known cure. This sounds pretty darn close for Debbie, who is considered in remission with this amount of tumor gone.

Those who have been following Debbie’s story and have read the Q&A with Dr. Vogl we posted on this site know that chemoembolization is a procedure currently in clinical trials. The process involves introducing chemotherapy directly to the tumor, and basically trapping it there, concentrating it where it is most needed. Dr. Vogl is head of the Department of Diagnostic and Interventional Radiology at J.W. Goethe University Hospital at Frankfurt University.

The clinical trial is currently treating between 300 and 400 patients with primary and secondary lung cancer annually, and about 20 mesothelioma patients.

For more information, see the Q&A with Dr. Vogl.

Read more of Debbie’s story at her blog, Mesothelioma & Me.
Tags: chemoembolization, clinical trials, Debbie Brewer, Dr. Thomas Vogl, mesothelioma, UK
This entry was posted on Tuesday, June 9th, 2009 at 3:31 pm and is filed under News, People, Research/Treatment. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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 The Mesothelioma Cancer Alliance would like to introduce you to a wonderful woman and our advocate of the month for October – Susan Ralston. Susan kindly shared with us the story of how her life has been affected by mesothelioma. Read more about her family and inspirational stepfather, and watch for her throughout the month as she plans to be a big contributor to our social community!
Cancer. My memories of cancer. I had a lovely stepsister named Lyndsay, who was the same age as me. She was diagnosed with a rare type of cancer in her late teens - Cushing's syndrome. I did not know anything about this disease, and was probably a bit naive about it all. All I could see was my stepsister gaining weight without an explanation and after several misdiagnoses, finally a right one. I have never known such a young person to show so much determination and fight in her. You could see the fear in my stepdad Ronnie's eyes, but she battled. Unfortunately, 10 days after her 19th birthday we got the dreaded call. Lyndsay had passed away. That was the day part of Ronnie died too. But you know, I think that he has somehow found that part again and is using it to fight his mesothelioma.

The worst and most painful memory of cancer has been my stepdad’s diagnosis with mesothelioma. In the summer of 2011 he developed a persistent cough that just wasn't getting any better. After a few visits to his doctor, he was sent for a scan. It showed fluid in the lung, so he was given medication. It didn't help. After several hospital appointments and a few admissions, he was told he had cancer the week before Christmas.

Everyone was a wreck. Ronnie was Ronnie-- calm and strong. All I've ever known him to be. Over the Christmas season, we tried so hard to put it at the back of our minds. With the focus on my two children, we managed a bit of normalcy, but it was always there. New Year's was specifically hard, trying to toast a new year of health and happiness when we had this going on. It was tough, especially for my mum, as she is fighting a battle of her own with a fatal kidney disease. She has been putting her own health on the back burner for a while throughout all this.

The biopsy was finally done in the New Year. We finally had a diagnosis. Sitting in the doctor's room; my mum, Ronnie and myself. We were shaking and trembling. Then the doctor said, "mesothelioma", "9 months from diagnosis", "very serious".

I couldn't believe this. It was February. The doctor had just given my stepdad 7 months to live, as he was technically diagnosed in December.

That day was awful with everything floating around in my head. Frantically, I started researching on the internet this "meso-whatever-thing" that I couldn't even pronounce. How on earth do I tell my kids that their papa is seriously ill? My 7-year-old son, Liam, and his papa are the best of friends. My 18-month-old daughter, Olivia, dotes on her papa. Ronnie worships his grandchildren. They are his strength in every way. They keep him going.

I was supposed to be getting married in April 2013. How on earth could I wait until next year? Ronnie might not be here. That's all I could see. He needs to be at my wedding. He was like a second dad to me. The only option was to bring the wedding forward. So it was decided, and the wedding was rearranged within 12 weeks, eleven months ahead of plan. A determined Ronnie kept wondering what all the fuss is about. "But I'll still be here next April" he reassured us, and we hope to God he is and we will have another party then to celebrate!

The wedding came and it was a great, but very emotional day. Our family had been through so much this year that we were ready for a party. And a party we had. My husband Scott has been my rock. Dealing with my moods, my bad tempers, and he has stood by my side throughout all of this.

Ronnie endured chemotherapy every few weeks and was wasting away in front of me. This once strong, sturdy man was becoming very weak and thin. It was all starting to get to him, and his emotions started to show. This was hard to see, especially for my mum. How on earth could she cope with this, I will never know. She has been a star for my kids, my step dad, and me.

The next consultant appointment came and extrapleural pneumonectomy (EPP) was thrown around the room. We were lucky enough to have the only doctor in Scotland that performs this procedure, as it is still only a trial here. "Lucky" is actually not a word I feel I would use in making the decision that could kill Ronnie on the table or make his remaining life a painful one. The doctor decided that Ronnie wouldn't be able to cope with the lifestyle that would follow an EPP and operation and was set for pleurectomy instead. They wanted to perform the operation a week before the wedding. Ronnie was adamant. "No operation at that time." So it was scheduled for the 27th of June.

The time for the operation came and Ronnie was a wreck, as were my mum and I. She was shaking; her nerves making her sick. Ronnie said goodbye to my kids. He did not take that too well. They give him strength and courage; a courage I have seen continuously grow in Ronnie. He has been determined from the very start of this journey to fight mesothelioma with every tooth and nail of his body. It is a courage and strength I admire with all my heart. After a long day of wondering what was happening and how the operation went, he finally came up to the intensive care unit. He looked awful, but he was doing ok.

After recovering in the hospital and eventually going home, he endured an awful lot of pain, but was on the mend. A scan was performed and the doctors were happy with the results. The scan looked good and the 7-month life expectancy was taken off the table. I could not believe it, such wonderful news! But there is mesothelioma still lingering in his chest and it's also surrounding his heart.

Ronnie has a rest from chemo for right now to help his body recover from the operation. He is due back in December to see what happens next, although that may be brought forward a bit as his symptoms and pain are returning. My main worry is how they will treat around the heart.

I have never seen such fighting spirit. Ronnie is determined to be here in this world for as long as he possibly can, and together we will make sure he is.

The fight continues.

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