Mesothelioma Survivor Lou Williams Fights for Her Life, For Others and For an End to Asbestos Use

In March we shared Lou Williams’ story as she struggles with both pleural and peritoneal mesothelioma. Through it all, Ms. Williams has maintained a positive attitude and has fought tirelessly to keep others from having to endure what she has gone through. In this article, we outline Ms. Williams’s advocacy efforts and her goal to end the use of asbestos in Australia and throughout the world.

Although Louise “Lou” Williams is a Mesothelioma Survivor – it has been nearly 10 years since she began her treatments – she is a mesothelioma patient advocate first. Nearly every day you can find her tweeting about another mesothelioma treatment, another company being held accountable in Australia for placing others in harm’s way, or about a new activity to ban asbestos. But many of her tweets are focused on the lives of the other mesothelioma warriors battling the cancer.

Ms. Williams’s positive, uplifting comments can also be found on her Facebook page and on the social media pages of her fellow mesothelioma warriors. Her messages encourage them to fight another day, or to call their doctor’s office and get in ASAP. Sometimes she simply sends a ♥ across cyberspace. Even as Ms. Williams endured another chemotherapy infusion, she reached out to her good friend Jan Egerton in England as she also struggles with the disease to say “Holding yr hand tonight xx,” and “cocooned luv and hugs.”

It All Started with her Father’s Mesothelioma Diagnosis

At 58 years old, Ms. Williams is more aware of the dangers of asbestos than she ever wanted to be. Ms. Williams watched her father die a painful death from mesothelioma in 1985. He was just 54-years-old and had worked in the building industry, where he was exposed to asbestos.

Appalled to learn that her father’s life was so quickly taken through no fault of his own, Ms. Williams soon began telling “anyone who would listen” that asbestos is an abhorrent mineral that leaves those exposed to it with devastating health conditions.

Then, in a tragic turn of events, Ms. Williams herself was diagnosed with the same cancer, brought on by the very same asbestos fibers that ultimately killed her father. As a child, Ms. Williams helped wash her father’s clothes, which were often covered with asbestos dust from work.

While fighting for her own life, Ms. Williams took on the asbestos industry to halt the use of asbestos and asbestos-containing materials that were ubiquitous in Australia.

“I believe spreading the word that there is no safe asbestos, and asbestos kills is helping to keep me alive,” said Ms. Williams in an e-mail to MesotheliomaHelp.

Raising Awareness of the Dangers of Asbestos

Just as Ms. Williams was shocked that being exposed to a small amount of the toxic fiber left her vulnerable to mesothelioma, many of the others she educated were also dumbstruck.

“Being a woman and living with this cancer has been an eye opener for many people,” said Ms. Williams.

In order to get the word out to the masses, Ms. Williams first had to find out everything she could about her treatment options, support options and where she, and others battling mesothelioma, could turn for help. She found that those options were limited, if not nonexistent.

Acting quickly, Ms. Williams formed a partnership with Asbestos Diseases of Victoria (ADSVIC) in January 2004, just months after she received her diagnosis. As Ms. Williams tells it, “I made contact, became their first client, and set about getting a support group happening with others.” Ms. Williams eventually became Vice President and joint awareness/advocacy coordinator on the board of ADSVIC and continued to rally support in Australia to end the use of asbestos.

Ms. Williams eventually realized that there was advocacy and awareness work to be done on a global scale, and she left ADSVIC (which is now AsbestosWise) and joined the Bernie Banton Foundation, an Australian group that provides support and information to asbestos-related disease sufferers and their families while Raising Awareness of the Dangers of Asbestos.

Fighting for Changes in Australia

Perhaps Ms. Williams’s greatest fight now is in her petition to the State of Victoria, Australia to join the National Asbestos Strategic Plan. According to an article in Invest in Australia, the aim of the plan is “to prevent exposure to asbestos fibres, in order to eliminate asbestos-related disease in Australia.” Victoria is the only state in Australia to not join the plan.

Always positive in outlook, Ms. Williams told MesotheliomaHelp, “Once this is in place then we will see in Australia quicker united action on awareness, education and removal on a prioritised scale.”

She is also fighting to see Asbestos Awareness Month recognized throughout the country. In a blog entry in early October, Ms. Williams said, “Having Asbestos Awareness Month happen is so important for me to see in my lifetime. Bring on next year and a nationally recognised Asbestos Awareness Month!”

Of course, educating the public about mesothelioma is just as critical. While the United States has a Mesothelioma Awareness Day set aside on Sept. 26 each year, Australia does not have such a day. Ms. Williams is campaigning to have Sept. 26 recognized as National Mesothelioma Day in her country. Ms. Williams said in her blog, this Awareness Day “would be terrific to see in my lifetime. This would then become a global Mesothelioma Day celebrated on Sept. 26!”

Never Going to Give Up

Ten years after her initial diagnosis, and having suffered through four surgeries, 36 rounds of chemotherapy, and countless days in the hospital, Lou Williams faces another round of chemotherapy. But she remains positive. She sees the cancer that took her father’s life and threatens hers as a means to educate the public about the dangers of asbestos — the only known cause of mesothelioma. She has turned the tragedy that has befallen her and her family into a sounding board to fight for the lives of others who may have been exposed to asbestos.

Ms. Williams has received countless awards and recognition for her dedication, focus and perseverance to ensure asbestos is banned and no one else suffers from a disease that is caused through no fault of their own. In June, the Asbestos Disease Awareness Organization (ADAO) announced that, for the first time, Ms. Williams and two other honorees will each receive the Alan Reinstein Award at the Asbestos Awareness Conference in 2014. The award is named for the husband of ADAO’s founder Linda Reinstein and recognizes individuals’ commitment to education, advocacy and support to countless patients and families around the world.

In a June article in The Examiner, Ms. Williams said she “will raise awareness for asbestos and its dangers until her last breath.”

“If I can help to save even one life,” Ms. Williams told MesotheliomaHelp, “I will be happy.”

Follow Lou’s mesothelioma battle and advocacy efforts at “Asbestos – Living with Mesothelioma in Australia – Louise (Lou) Williams.”

Sources:

Petition to the State of Victoria,
http://www.thepetitionsite.com/376/207/908/petition-the-state-of-victoria-australia-to-join-the-national-asbestos-strategic-plan
The Examiner
http://www.examiner.com.au/story/1575188/voice-for-asbestos-victims
Alan Reinstein Award
http://www.asbestosdiseaseawareness.org/archives/22455
Invest in Australia
http://www.investinaustralia.com/news/64-million-tackle-australia%E2%80%99s-deadly-asbestos-legacy-12c3

Pain Management as Treatment Plan for Mesothelioma Patient

Treatment Plan Includes Pain Management for Mesothelioma Patient

Pain management is an important part of the medical management of mesothelioma. Over fifty percent of mesothelioma patients report they suffer from pain at some time during their battle with the disease. The most common pain-related symptoms reported by patients with malignant pleural mesothelioma are general pain, back pain, and chest pain. Patients can get pain from several different sources, which is why the assessment of pain needs to be thorough and extensive.

Pain can be managed if it is included as part of the mesothelioma treatment plan. Pain and palliative care specialists are experts in pain control. Palliative care specialists treat the symptoms, side effects, and emotional problems of both cancer and its treatment.

There are different types of pain from malignant mesothelioma – tumors can infiltrate the intercostal nerves (nerves which arise from the thoracic nerves, and run between the ribs) causing a painful syndrome known as neuropathic pain syndrome. If a patient has chemotherapy, they might develop a peripheral neuropathy. If they receive the chemotherapy through an abdominal port, they can experience pain at the port site and diffuse abdominal pain.

Some patients who undergo surgery, either a pleurectomy or an extrapleural pneumonectomy can develop post-thoracotomy pain, neuropathic pain localized to the region of the thoracotomy scar. This can be experienced months post-surgery. The pain is often described as an aching or burning. A small percent of surgical patients can also develop post-operative frozen shoulder which is limited shoulder range of motion usually caused by untreated thoracotomy pain and inadequate rehabilitation.

Treatment for mesothelioma pain depends on the source of the pain. For pain caused by the chemo agent cisplatinum, which can cause peripheral neuropathy, corticosteroids, tricyclic antidepressants, and alpha-2 agonist may be used. Specific medicines that may be used are Gabapentin, Pregabalin, Phenytoin, Carbamazepine, Dexamethasone, Prednisone, and Amitriptyline. For patients with thoracotomy syndrome, lidocaine patches—worn for 12 hours per day—have been found to help. Other treatments shown to be effective are trigger-point injections, nerve blockers, and neurolytic procedures.

According to an article in Cancer Investigation, “It is estimated that chronic pain in patients undergoing cancer treatments range from 33 to 50 percent, it is considerably higher (over 70 percent) in patients with advanced disease.” If someone is having continuous pain, opioids (narcotics) will be ordered. Opioids consist of Morphine, Codeine, Oxycodone, Hydromorphone, Oxymorphone, Fentanyl, and Meperidine. They can be taken by mouth, injection, intravenously, rectally, transmucosal- lollipops, or by spinal infusion.

The most important thing to remember is that pain can be managed effectively with help from your medical team. However, you play a critical role by describing the pain, keeping records of when the pain happens, communicating with your team, and being honest about the effectiveness or lack of relief from the treatment.

UK Mesothelioma Clinical Trial Tests for Mesothelioma Patients

Early Detection of Mesothelioma Could Someday be Possible Through Simple Urine Test

Researchers and physicians agree that the best way to combat cancer is to detect the disease at its earliest stage, when patients have the most treatment options available to them. Many cancers, including mesothelioma, however, do not have reliable, noninvasive screening methods. Now, researchers report success in detecting cancer through a simple urine test.

According to an article in MIT News, a team led by Sangeeta Bhatia, a member of MIT’s David H. Koch Institute for Integrative Cancer Research, has found a way to “amplify” cancer proteins to enhance the ability to detect them. Specifically, the researchers “developed nanoparticles that can home to a tumor and interact with cancer proteins to produce thousands of biomarkers, which can then be easily detected in the patient’s urine.”

Not only could this process be used to detect cancer, but it is also useful for monitoring disease progression and responsiveness to treatments.

Researchers at both MD Anderson Cancer Center and Massachusetts General Hospital Cancer Center are also in the early stages of developing a cancer detection tool using circulating tumor cells (CTCs). The tests must be highly sensitive to detect such few cells in the bloodstream. These tests, while still in the early phases of testing, can detect lung cancer as well as determine the efficacy of the treatment. The hope is that the tests may also be able to detect mesothelioma.

Although finding CTCs in the bloodstream has been likened to finding a needle in a haystack, the MIT researchers found a process to treat the nanoparticles so that they would accumulate at the tumor site. Hundreds of peptides are then released from the nanoparticles, flooding the bloodstream. They then rapidly accumulate in the kidneys where they are excreted in the urine, and are detected using mass spectrometry.

“There’s a desperate search for biomarkers, for early detection or disease prognosis, or looking at how the body responds to therapy,” says Bhatia.

This research “is an exciting approach to overcoming the problem of biomarker scarcity in the body,” says Sanjiv Gambhir, chairman of the Department of Radiology at Stanford University School of Medicine. Gambhir was not part of the research team.

Mesothelioma is a rare, serious cancer most often affecting the lining of the lungs that occurs in individuals exposed to airborne asbestos fibers. Diagnosing the disease is extremely difficult and many patients are not diagnosed until they exhibit life-threatening complications. Research of this type is needed to help prevent the nearly 3,000 Americans from dying of the disease each year.

Mesothelioma Metastasis Closer to Being Understood, Stopped

Researchers from the Massachusetts Institute of Technology report they have found the mechanism that allows cancer cells to break off the initial tumor site and spread to other parts of the body. Cancer cells are typically anchored in place, but understanding how they break free and migrate, the researchers believe, is the key to uncovering a new approach to cancer treatment.

The researchers report that metastasis is the cause of nearly 90 percent of cancer deaths. Pleural mesothelioma, a cancer of the lining of the lungs caused by past asbestos exposure, is one cancer that is highly aggressive and spreads quickly. The National Cancer Institute reports that treatments for patients with metastatic cancer are to control further growth of the cancer or to relieve symptoms caused by it. In some cases, metastatic cancer treatments may help prolong life. However, according to the NCI, most people who die of cancer die of metastatic disease. Understanding how to stop metastasis is critical for increasing survival in mesothelioma patients.

In a study published Oct. 9 in Nature Communications, MIT researchers reported that proteins called integrins, located on cell surfaces, form the anchors that hold the cells in place. But cells temporarily lose their ability to adhere as they become more metastatic, and the anchors “let go.” The freed cells then move to another area and regain their ability to adhere or stick to tissues, forming another tumor.

“If we can prevent them from growing at these new sites, we may be able to interfere with metastatic disease,” says Sangeeta Bhatia, the John and Dorothy Wilson Professor of Health Sciences and Technology and Electrical Engineering and Computer Science, and leader of the research team.

The authors of the study found that metastatic tumors stuck especially well to fibronectin and galectin-3 proteins that are made of proteins that contain or bind to sugars. This finding, they suggest, can lead to development of new anti-cancer drugs that focus on “a specific protein-protein or protein-sugar interaction, rather than a particular gene mutation.”

The research team is currently developing drugs aimed at inhibiting tumor cell interactions with galectin-3.

2,500 to 3,000 people are diagnosed with mesothelioma each year in the U.S. Mesothelioma takes decades to appear after exposure, but then advances rapidly.

Lifestyle Choices Can Make a Difference but Cannot Prevent Mesothelioma

According to the National Cancer Institute only 5% of cancers are caused by genetics. The remaining 95% of the cancer diagnoses are dependent on choices we make every day, such as food selection, smoking decisions, sun exposure and exercise habits. Medical experts report that by making lifestyle changes Americans can improve their quality of life and can largely eliminate their likelihood of developing cancer. Exposure to environmental hazards, however, also determines whether someone will contract cancer. But for the close to 3,000 Americans diagnosed with mesothelioma each year, prevention of the disease is not an option as they were often unwittingly exposed to asbestos, a toxic mineral, years ago as they worked for a living.

Most cases of mesothelioma, a deadly form of cancer, are diagnosed 30 years or more after exposure to asbestos, with the latency or incubation period sometimes being as long as 50 years. While many uses for asbestos were banned in the mid-1970’s, the effects of the mineral continues to be a threat to workers exposed through their occupations and in buildings that were erected or renovated prior to the ban. Most at-risk for the disease are trade workers who inhaled asbestos fibers in the workplace or Navy veterans exposed to asbestos in ships.

No Safe Level of Asbestos Exposure

The health risks of asbestos have been thrust back into the spotlight on the heels of the announcement that Quebec will not only resume mining of asbestos, but will also export the mineral to developing countries where safe handling requirements are not in place. Production at the Jeffrey Mine could result in the mine eventually producing up to 225,000 tons of chrysotile asbestos per year.

The International Mesothelioma Interest Group (IMIG) stated in March that it “deeply regrets that the Quebec Government has provided the loan guarantee that enables resumption of asbestos mining in Canada.” They contend that all types of asbestos have demonstrated their ability to cause asbestos-related diseases. Formed to improve communication and collaboration among workers interested in mesothelioma, the IMIG reiterated their long-standing position, “there is no safe use of asbestos.”

Philip Landrigan, Dean of Global Health at the Mount Sinai School of Medicine in New York, agrees with IMIG and stated in a letter to Quebec Premier Jean Charest in an attempt to halt reopening the Jeffrey Mine that “there is no safe exposure level [of asbestos]. It goes on killing for generations.”

Time to End Asbestos Use

According to the World Health Organization (WHO), asbestos causes approximately half of all deaths from occupational cancer. 125 million people worldwide are exposed to asbestos in the workplace. In addition, they estimate 90,000 people die each year from asbestos-related lung cancer, mesothelioma and asbestosis.

The tragedy of mesothelioma is that the disease is completely preventable through the ban of asbestos. Unfortunately, this is not at a choice that an individual has control over, as it is often made at the government level. Advocates for mesothelioma patients continue to call for a ban of asbestos as the only way to halt mesothelioma.

For more information please check our New York Mesothelioma Resources page.

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