Mesothelioma Help Cancer News
When the Changes Caused by Mesothelioma Slowly Creep Up
When you see someone everyday as they undergo treatment for mesothelioma, the physical changes can start gradually. As the caregiver, you accept and adjust to the changes. As your loved one changes over time, daily, you become accepting of them, and sometimes you don’t even see them or you discount them as being anything. When you are in the throes of caring for someone, you can lose perspective on how sick someone has become. You become accustomed to the symptoms of the disease progressing.
Maybe it is shortness of breath, pallor, swelling of the lower extremities, or the patient’s physical activity that has declined. When you step back and look at your loved one, away from the hospital setting, back in familiar settings, sometimes it is shocking, that you had not recognized the changes that are now glaring. How did you not see these changes?
Probably because you have been busy administering medications, providing comfort, pushing for more and better nutritional intake. It just happened. But now others are asking why you didn’t let them know, why you didn’t call or why you kept saying that everything is fine.
The truth is that the caregiver did not see it. Many people have been in this situation: the reality is that the disease is progressing. This is difficult to see and accept.
At this point, it is important to take a deep breath. Re-focus on fighting the symptoms, but accept what you cannot change and understand that time may well be limited and precious. By just being there you are providing emotional comfort and you are helping. Express your feelings, reminisce about the past, sit quietly.
Time is precious, and it only comes once, don’t miss it.
It’s Time to Stand Up To Mesothelioma
A mesothelioma diagnosis, at any age, is devastating. This disease does not discriminate; it doesn’t care how old you are, your gender doesn’t matter, and it certainly does not have any esteem for your family. My Dad was 55 when he was diagnosed and 57 when he passed away. In the time since, he has missed the birth of his grandchild. He never got to see her crawl, witness her first steps, or hear her babble. He has been absent for three Christmases, two Easters, two of his own birthdays, and countless other events.
I recently had the privilege of becoming acquainted with a very young mother battling this disease. I’m so happy to say that she is doing well, but the fact that she ever had to deal with mesothelioma strongly angers me. For a woman in her youth to have to face such a difficulty is tragic.
I have been contacted by many people telling me that either they or a loved one are unfortunate members of the mesothelioma community. They come from all different walks of life and their stories are all different. The sad common denominator is this cancer. It is time for us all to stand up and say that enough is enough.
Please contact your state representatives to work toward increased funding for mesothelioma research. Tell them that you want asbestos banned in the United States, a country where it is still legal, but extremely lethal. Contact the Mesothelioma Applied Research Foundation and work toward a fundraiser, or make a donation. Pray for those affected. There are many ways to help, choose the one (or ones) that is best for you and let’s work to find the cure together!
Know more about Mesothelioma and how you can deal with it.
Mesothelioma Nurse Encourages Families to Celebrate Their Loved Ones
This past month, an older couple left a big impression on all the health care team members that they encountered. The patient, the woman, was bubbly and talkative; her husband was reserved and quiet. Together they were devoted to each other with an unshakable bond. They were a team facing mesothelioma, but it was not going as planned. Through their stay, before surgery, after surgery, and through the woman’s complications, one thing was clear: they loved each other.
They are a very loving couple, they have had a wonderful life together, but now she has mesothelioma and he is helping her. Their goal was to be home for the holidays. To have one more Christmas and to welcome in one more New Year in their own home, with their family and their traditions. The road has been short from diagnosis to this point. They have followed their mesothelioma team’s recommendations, but, unfortunately, she has not responded to the treatment as hoped.
They are now facing some big decisions about what is next. As their journey with mesothelioma continues, the rhythm of their lives is forever altered. They will be home for the holidays, savoring every moment, creating memories together, as they have been before mesothelioma. Together they will face the next chapter in their lives, and together they did make it home.
As we celebrate the holidays, remember to enjoy your loved ones, celebrate the joy in life, and remember to reach out to someone who might be alone and having a hard time this holiday season.
A Happy, Healthy New Year to all!
Know more about Mesothelioma and how you can deal with it.
A Look at 2016 Mesothelioma Conferences
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
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.”
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.
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
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