Month: January 2016

A Look at 2016 Mesothelioma Conferences

• Lisa Hyde-Barrett
• Nurse's Corner

We know from previous years that approximately 3,000 people in the United States will be diagnosed with mesothelioma. Of those 3,000, approximately one third will be veterans of the U.S. armed forces, they will be in their seventies and the majority will be males. Their asbestos exposure, the known cause for mesothelioma, will be as many as 20- 50 years before their diagnosis. These facts have not changed for many years.

The good news is the treatment, clinical trials, information, and options are so much more advanced now – and they will continue to advance in 2016. Through our ability to find information on the internet, and the availability of published research and public international conferences, we have been able to share the knowledge. With these resources, patients and families living with mesothelioma are better able to make more informed decisions.

Learn firsthand about the latest breakthroughs at these upcoming 2016 conferences:

• 12th Annual International Asbestos Awareness and Prevention Conference – Presented April 8-10, in Washington D.C., by the Asbestos Disease Awareness Organization. Following the theme “Where Knowledge and Action Unite,” the conference brings together speakers ranging from experts, victims, and unions to lawmakers from across the globe to speak about efforts in asbestos education, advocacy and awareness.
• 13th International Conference of the International Mesothelioma Interest Group (iMiG) – Held May 1-4 in Birmingham, UK, this conference, under the theme of “Towards Personalized Care,” will address the entire patient pathway and look beyond the scientific topics alone.
• International Symposium On Malignant Mesothelioma – Presented by the Mesothelioma Applied Research Foundation, this year will consist of three individual conferences in major cities: Houston (May 20), San Francisco (Sept. 16), and Chicago (Oct. 7). Each conference will feature top mesothelioma experts, professionally-moderated support sessions, and numerous opportunities for socialization. Patients, caregivers, family members, medical professionals, and anyone wishing to learn more about mesothelioma should feel free to attend.

If physically attending these conferences is not possible, look into attending “remotely” via the internet.

Knowledge is power. As the year progresses, follow along and we will update and expand on the pertinent mesothelioma conferences.

Sources:

• 12th Annual International Asbestos Awareness and Prevention Conference
  http://www.asbestosdiseaseawareness.org/archives/34425
  
• Asbestos Disease Awareness Organization
  http://www.cvent.com/events/2012-annual-asbestos-awareness-conference/archived-e6277e3d443b4c059bed43fc0937b530.aspx
• 13th International Conference of the International Mesothelioma Interest Group
  http://imig2016.org/
  
• International Symposium On Malignant Mesothelioma
  http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8578185/k.F0D0/INTERNATIONAL_SYMPOSIUM_ON_MALIGNANT_MESOTHELIOMA.htm
• Mesothelioma Applied Research Foundation
  http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8598593/k.D685/Homepage.htm

Mavis Nye: Mesothelioma Survivor, Advocate and Author

• Nancy Meredith
• Featured News

Last week we featured Mavis Nye and her breakthrough results in a clinical trial where she received the immunotherapy drug known as Keytruda in the U.S. (The same drug that freed former U.S. president Jimmy Carter of his melanoma.) Today, read about how Mavis is making a difference for the mesothelioma community.

Mavis Nye knows what it takes to fight mesothelioma: persistence, relentlessness and thick skin. It took every one of those traits, and many more, and over six long years for her to successfully beat mesothelioma. Now, she has made it her goal in 2016 to make it a little easier for other mesothelioma warriors by intensifying her education and advocacy efforts.

Mavis was given a nearly clean bill of health in November when she was told that her formerly life-threatening mesothelioma tumors are now dormant. Finding that silver bullet was not easy, and Mavis said that she and Ray, her husband of 55 years, “hunted down information and treatments,” covered hundreds of miles around the country traveling to hospitals and to conferences, and contacted nearly every mesothelioma specialist she could find to give her an opportunity to live to see another Birthday.

Mavis saw firsthand that pembrolizumab is not for everyone, but a U.S. clinical trial found the drug to be effective in controlling mesothelioma tumors in three-fourths of patients. With her own success, and the hope that others will see the same results, Mavis wants to help get the drug available to other UK mesothelioma patients.

“It’s very daunting [being the first patient to achieve remission] and I feel I have to really keep fighting to get the other Mesowarriors onto the drug,” says Mavis. “OK, it’s not for everyone, but at least give everyone a chance.”

Mavis Nye’s Meso Story

In 2010, Mavis published her book, “Meso Warrior,” to share her story and to “give other mesothelioma sufferers the insight that it’s not all doom and gloom.”

At the end of last year, she followed that up with her second book, “Five Years a Mesowarrior.” In this book, Mavis takes the readers through four chemotherapy regimens and two phase one clinical trials, ending just prior to her current trial at the Royal Marsden.

“I want them to have hope,” said Mavis when asked what she wants readers to get from her stories.

“I want people to see that you can live with a terminal illness and fight, but at the same time educate people about asbestos and the disease it causes.”

Mavis already has another book in the works. She will publish it when the Royal Marsden trial is complete and she can freely talk about the results.

“I hope also to be proving I’m living without Mesothelioma by then.”

Mavis Will Shout from the Rooftops for the Mesothelioma Community

“I have campaigned for asbestos victims, and spoke in the House of Commons of the need for more research and trials,” Mavis told Mesothelioma Help of her advocacy efforts. “I have joined in with British Lung Foundation and Mesothelioma UK, and been the voice for Mesothelioma Patients.”

Expert Insight

Mavis Nye

“My new year’s resolution is to be an even bigger voice in 2016.”

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Anyone who knows how hard Mavis has worked in the past, will find it hard to envision how she will push even harder in the new year. But, those same people know that Mavis does what she says she will. Her list of support efforts continues to grow, along with the numbers of people impacted by her work.

“I will be talking at the iMIG Conference [May 1-4 in Birmingham, UK] where I will be free to talk about my success with Keytruda, and we are going to make a huge push for the next trial,” says Mavis. “I will be very involved in the NHS [National Health Service, the publicly funded healthcare system for England] and my job as Patient Rep in the Local East Kent Cancer Network, and also in Research of Cancer Treatment in London and Leicester Hospitals.”

Most recently, Mavis has begun her support of “men who strip out asbestos, as I feel they are working in hazardous conditions.” She agreed to be Patron of the Charity for the newly established Hazmat Professionals. The official launch of the organization will be early this year.

“It was my dream to leave this legacy and I have achieved it with the backing of some lovely people,” Mavis wrote in her Nov. 8 blog entry in A Dairy Of A Mesowarrior Living With Mesothelioma.

“People like myself must shout from the roof tops and be heard. I have a voice and I will use it: in my blog, my speeches, my books and Facebook!”

See last week’s article of Mavis Nye’s exceptional treatment results: Clinical Trial Frees Mavis Nye of Mesothelioma.

Find out more about Mavis and Ray at the following links:

• A Diary Of A Mesowarrior Living With Mesothelioma
  https://rayandmave.wordpress.com/2015/11/17/a-diary-of-a-mesowarrior-living-with-mesothelioma-scan-results-have-really-shocked/
• Onestop Mesothelioma
  http://onestopmesothelioma.co.uk/index.html
• Mavis and Ray’s Bookstore
  http://www.lulu.com/spotlight/nyeray7070

Mavis and Ray on MesotheliomaHelp:

• Clinical Trial Frees Mavis Nye of Mesothelioma
• Mavis Nye Finds Her Voice and Fights for the Mesothelioma Community
• The Man Behind the Mesothelioma Warrior: Ray Nye Discusses Caring for His Wife

Mavis donates all proceeds of her books to Mesothelioma UK to help raise funds for research. Order her books at Mavis and Ray’s Bookstore.

Use Your Voice to Fight Mesothelioma in 2016

• Nancy Meredith
• Featured News

As another year kicks off, many people like to reflect back on the last year and find ways to make the New Year better. For patients battling mesothelioma, though, better may not be an option. However, you may be able to be just a little more vocal to make a difference in your own care and in educating the public about mesothelioma.

Mavis Nye, of England, who after six and one-half years of battling mesothelioma was told her tumors are now devoid of mesothelioma, told Mesothelioma Help that she will use 2016 to advocate for all patients.

“My new year resolution is to be an even bigger voice,” says Mavis. “I will be talking at the iMIG Conference [May 1-4 in Birmingham, UK]…I will be very involved in the NHS… and also in research of cancer treatment in London and Leicester Hospitals.” And, she said, she will ” keep fighting to get the other Mesowarriors onto the drug [that has halted her mesothelioma].”

Read how Mavis Nye kicked mesothelioma.

You may choose to advocate for the mesothelioma community by participating in an event or by creating your own fundraiser. Jennifer Gelsick, whose father lost his fight with mesothelioma in 2013, offers a wealth of advice on how to educate friends, family and the public on mesothelioma and to bring in money to support research at the same time. See her advocacy page for more information.

You can also use your voice to be empowered to aid in your own care. When patients are empowered it means they are informed of their disease and their treatment options, and they are willing to take an active role in their treatment. Knowing what questions to ask of your physician when diagnosed with mesothelioma is an important step towards becoming an empowered patient.

Experts at MD Anderson Cancer Center suggest asking the “right” questions to get more out of the interaction with your health care providers. Don’t be afraid to say, “I don’t understand what you’re saying,” and ask them to explain it again, and again until you understand the information. Work with your mesothelioma care team to develop your treatment plan and to make all decisions – don’t just settle for what they say if you have doubts.

Managing a disease such as mesothelioma can be overwhelming, but partnering with your physician from the start may be the key to receiving the best treatment.

Now that 2016 is here, you  have 365 new days to make a difference. But, you also have 365 chances to take the time to enjoy the simpler things in life.

“I do hope to get back to camping with my Kent Caravan and Camping Club,” says Mavis of her 2016 hopes.

All of us here at Mesothelioma Help wish all of you a Happy New Year and best wishes for 2016!