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Mesothelioma Survivor Jan Egerton Pens Book to Raise Research Funds

Jan Egerton in wheelchair

Jan Egerton enjoys a visit to the store.

Mesothelioma can be an all-consuming disease. The physical and emotional toll of dealing with the symptoms, treatments and side-effects can leave those battling the cancer overwhelmed and exhausted. For many, plans are put on hold and “living for the day” becomes a mantra. Jan Egerton, a long-time mesothelioma survivor from England, lives for each day as well, but she can’t stop hoping for a future that holds a cure for mesothelioma. Jan hatched a plan last year on how she could help make that a reality, and this month she published her 402-page novel and is donating a portion of the proceeds to raise funds for mesothelioma research.

Although Jan loves writing and has always wanted to write a book, she had primarily used her blog, “Mesothelioma – Jan’s Journey,” to fill the void. However, after one particularly contentious day at work in early May, Jan came home, sat down at the computer and created “The DreamWeaver’s Choice.” Jan was so focused on the story that “the words just tumbled out, and my poor fingers couldn’t keep up,” she said.  Three weeks later she had completed her first draft.

“Writing, regardless of whether it’s fiction or mesothelioma-related helps me deal with the cancer, instead of the mesothelioma eating away at me from the inside,” said Jan in an email interview last week. “Writing has given it a way to come out and keep me sane.”

Writing also gave Jan an opportunity to give back to the mesothelioma community. Jan contacted Chris Knighton, founder of the Mick Knighton Mesothelioma Research Fund (MKMRF), an English organization that was established to raise awareness and fund crucial research projects for mesothelioma, to let her know that she wanted proceeds from the sale of her book to help fund research through the Mick Knighton Mesothelioma Research Fund.

For Jan’s previous work with MKMRF and her continued generosity to help fund research efforts by the organization, Chris named Jan Ambassador for MKMRF.

“Jan is a source of inspiration and hope to so many people living with mesothelioma, and she has surpassed herself once again by writing a novel with the proceeds going towards the Mick Knighton Mesothelioma Research Fund,” Chris told MesotheliomaHelp.org in an email.

Chris explained that an MKMRF Ambassador acknowledges the work of the Research Fund wherever and whenever possible; helps to raise its profile, and encourages fundraising to help the organization continue its work in the fields of research, support and campaigning so fewer and fewer people have to go through the pain and suffering mesothelioma brings both sufferer and their family.

“What better person could we have as an ambassador than Jan, a true mesothelioma survivor, and indeed it is us at MKMRF who are humbled and honoured to have her on board,” said Chris on naming Jan ambassador.

“The DreamWeaver’s Choice” is a complex story of the battle of good versus evil where the central characters are vampires and spirits, and a human detective with her beloved K-9, Bear Boy. The story moves from the 1800’s, when vampires roamed the streets of England and viciously took victims, to modern day where vampires still live in England but have divided into factions of “good” vampires who live among humans without harming them, and “bad” vampires who continue to stalk and attack unsuspecting Brits.

The good vampires rely on a sophisticated set of medicines and supplies to help them function normally, but their enemies are working hard to hijack and sabotage their efforts while reaping billions of dollars by extorting the desperate vampires needing the potions to remain part of society. The players in the book have deeply intertwined lives and knowing who to trust becomes a matter of life and death.

“I only hope the book does the charity justice and raises some much needed funds,” says Jan.

Jan self-published the book and is trying to promote it via word of mouth and social media. You can find information about the book at Novelist Jan and on Facebook at Bearboy Vampire Books. The book is available for Kindle at Amazon.com. USA readers can order here, UK readers can access the book here. Jan is currently working on a print version of the book.

Sources:

  • Facebook at Bearboy Vampire Books
    http://www.facebook.com/#!/pages/Bearboy-Vampire-Books/168388509977228
  • Novelist Jan
    http://novelistjan.blogspot.co.uk/

Understanding the Emotional Support Needs of Patients Undergoing Mesothelioma Treatment

Medical researchers at Memorial Sloan-Kettering Cancer Center in New York are currently conducting a clinical trial examining the emotional support and psychosocial needs of patients undergoing treatment for mesothelioma. The researchers are studying how mesothelioma, an aggressive form of cancer, affects patients’ emotional and physical well-being and quality of life.

Mesothelioma is a terrible disease caused by exposure to asbestos. It takes a toll on patients and their families. Patients receiving treatment for mesothelioma may experience mood swings, feelings of isolation and symptoms of anxiety and depression.

The laudable goal of the research is to find ways to reduce the physical and emotional strains of mesothelioma patients and develop better ways of coping.

As part of the clinical trial, mesothelioma patients are invited to join a therapeutic internet-based discussion group, allowing patients to take part from the comfort on their own homes. The small groups of three to five patients meet for approximately an hour once a week.

Patients who have been diagnosed with pleural mesothelioma, a cancer of the lining of the lung and who are undergoing treatment at Memorial Sloan-Kettering Cancer Center are eligible for the trial. Find contact information about the clinical trial.

Approximately, 2,500 to 3,000 people are diagnosed with mesothelioma each year in the United State. Most are older workers, retired workers and veterans who were exposed to asbestos in workplace or during military service. For patients who are diagnosed with less advanced mesothelioma, there are treatments available to try to manage the disease.

Mesothelioma Survivor and Family on the Lookout for a Breakthrough

Lately, it seems like there has been a buzz regarding possible new treatments for mesothelioma.  This brings me even more faith that a cure is just on the horizon!  Keeping up with the newest treatments, however, is confusing and difficult at times.  Understanding the medical terminology and even the basics can be daunting and scary, but it is a gateway to hope and a cure.

Researchers have spent a great deal of time working towards the goal of curing mesothelioma permanently, and I believe that a breakthrough is on the horizon.  Some of the treatments and procedures that my Dad was blessed enough to go through were fairly new or still in the clinical trial stage.  Many of these recent developments have helped so many mesothelioma patients.

For a newly diagnosed patient, these treatments could literally be their lifeline.  In the future, mesothelioma may not be as scary as it is today!  Of course, no one wants to hear this diagnosis, but there will hopefully be a time soon when it can be said, “We can get rid of this permanently, no problem!”

We would not be where we are in the fight against mesothelioma if new, revolutionary procedures and techniques had not been conceived and brought to fruition.  These treatments are not necessarily only for the newly diagnosed, they are also for survivors.  These could be things to help prevent a recurrence, and to treat a recurrence if it were to occur.  There may be something out there that could guarantee there would never be a recurrence, or add to the survivors quality of life.  We have to be diligent to make these dreams a reality.

My Dad has been a part of new treatments, and they have been a Godsend.  With prayer, trust in God, and faith, a cure will come!  Countless people are awaiting the day when the announcement comes that a cure has been found.  My family and I are among them, waiting to celebrate!

9th Annual Asbestos Disease Awareness Organization’s International Asbestos Awareness Conference

ADAO Conference Brings Mesothelioma Advocates Together

The 9th Annual Asbestos Disease Awareness Organization’s International Asbestos Awareness Conference will be held March 22 – 24 in Washington, DC. The conference, entitled “The Asbestos Crisis: New Trends in Prevention and Treatment,” will focus on the latest advancements in disease prevention, global advocacy, and treatment for mesothelioma and other asbestos-related diseases.

Asbestos is a known carcinogen and is proven to cause mesothelioma, lung cancer and asbestosis. The serious harm caused by exposure to asbestos is a nationwide and worldwide problem. In fact, the World Health Organization estimates 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. Close to 3,000 Americans are diagnosed each year with the deadly asbestos cancer.

According to the conference website, the conference includes “four powerful, cutting–edge sessions:”

  • Medical Advancements: Diagnosing and Treating Mesothelioma and Other Asbestos-Related Diseases
  • Patients and Caregivers: Navigating the Medical Maze
  • Prevention: What Is It? Where Is It? What Do I Do?
  • Advocacy: Global Ban Asbestos Action

Speakers at the conference include keynote speaker Dr. Aubrey Miller, Senior Medical Advisor and National Institute of Environmental Health Sciences Liaison to the U.S. Department of Health and Human Services; Karen Banton, widow of the late activist Bernie Banton and CEO of the Bernie Banton Foundation, an Australian foundation that provides support and information to asbestos-related disease sufferers and their families while raising awareness of the dangers of asbestos; mesothelioma survivors; ADAO staff; environmentalists; physicians; nurses and scientists.

Lou Williams, a mesothelioma survivor from Australia highlighted in an article last week on MesotheliomaHelp, will attend the conference as a representative of the Bernie Banton Foundation. According to the agenda, Lou will present “Mesothelioma Warriors Unite” March 24.

Honorees this year include U.S. Representative Lois Capps receiving the Tribute of Hope Award, Dr. Celeste Monforton receiving the Dr. Irving Selikoff Lifetime Achievement Award, Karen Banton receiving the Tribute of Inspiration Award and Mavis Nye, a mesothelioma patient, will be recognized with The Alan Reinstein Award.

ADAO was founded by asbestos victims and their families in 2004.   ADAO seeks to give asbestos victims and concerned citizens a united voice to raise public awareness about the dangers of asbestos exposure. ADAO is the largest independent organization dedicated to preventing asbestos-related diseases.

See the ADAO website for more information on the conference.

FDA Warning Miracle Cures for Mesothelioma Patients

Mesothelioma Patients May Benefit from Demonstration of Cure in Another Incurable Cancer

Mesothelioma is a rare, incurable cancer of the lining of the lungs, heart and abdomen that is caused by past exposure to asbestos. The cancer is extremely aggressive making treatment challenging. However, researchers agree that understanding how to stop metastasis is critical for increasing survival in mesothelioma patients. The same is true of other cancers, but blocking the growth of tumors has been elusive and has remained a key focus of cancer research. Now, researchers at UT Southwestern Medical Center report they have successfully blocked tumor development of an incurable cancer, effectively demonstrating a cure.

The researchers developed a genetic mouse model of untreatable malignant peripheral nerve sheath tumors, a form of cancer of the connective tissue surrounding nerves, to conduct their study. They showed that by blocking the activity of a receptor molecule named CXCR4 they were able to inhibit tumor development.

“To my knowledge, this is the first time that a mouse model of a genetically defined malignant human cancer has been generated in which the formation of the tumor from beginning to end can be monitored and in which blocking the pathway cures the mouse of the tumor,” said Dr. Luis Parada, chair of the department of developmental biology at UT Southwestern and senior author of the study.

The National Institutes of Health reports that mouse models are critical in medical research. The models  “that recapitulate many aspects of the genesis, progression, and clinical course of human cancers are valuable resources to cancer researchers engaged in a variety of basic, translational, clinical and epidemiological investigations.”

According to the study published in Cell, the researchers found that CXCR4, a protein essential for tumor growth, is more abundant in cancerous cells than in precursor cells. They also found that a molecule produced by the cancer cells themselves, CXCL12, works with CXCR4 to stimulate yet another protein that causes the cells to split and divide, thus stimulating more growth.

Through both genetic manipulation and injection of an FDA-approved antagonist drug for CXCR4 the researchers were able to inhibit the cancer growth. The approach was less effective in tumors without the increased expression of CXCR4.

“We are very encouraged by these findings because they provide us with new directions and therapeutic windows to combat this deadly cancer, where none exist today,” said Dr. Lu Q. Le, co-senior author of the study and assistant professor of dermatology.

Researchers from the University of California published a separate study reporting that CXCR4 and CXCL12 proteins “are highly expressed in most mesothelioma cell lines and tumor tissues, suggesting that CXCR4 and CXCL12 may be used as biomarkers for patients with mesothelioma. The CXCL12-CXCR4 interaction may be a potential therapeutic target for mesothelioma.”

Targeted, personalized therapy based on a patient’s unique mesothelioma characteristics, such as expression of certain biomarkers like CXCR4, optimizes the potential for success of the treatment and offers treatment options that may not otherwise have been considered.

Mesothelioma, caused by asbestos exposure, is diagnosed in close to 3,000 Americans each year. Currently there is no cure for the disease, but research into treatments of other cancers is followed closely by the mesothelioma community in hopes the results are transferrable to mesothelioma patients.

The UT Southwestern Medical Center researchers are currently planning human trials.

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