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.”

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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

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!

Importance of Communicating to a Loved One with Mesothelioma

There are a few things that struck me this week as I was taking care of a mesothelioma patient. I always learn something from every patient. The patient, who had surgery was doing very well, and his wife came to visit him often. But, she was concerned about another family she had met while her husband was in the hospital.

The other patient was not doing as well, and he and his wife were from out of state. His wife was alone, although they had grown children who were in phone contact, they both told them not to come. At the beginning this plan was working for them, but as time went on, the wife needed some support and relief.

With the holidays approaching, they were reluctant to “bother” their children. Mesothelioma is a very difficult disease and treatment regimen to endure alone. To be far from home and to have this on your shoulders is a lot. Family and friends want to do the right thing, but often they don’t want to overstep their boundaries. People want to respect the patients and their families privacy.

In different situations when the parents did call for help, I have heard, “Why didn’t you call me sooner?” “We wanted to come, but you didn’t want us to.” Often, in the caregiver’s and patient’s eyes asking for help and support is an admission that things are not going well. What I have seen is that some caregivers and patients are not going to ask for anything, regardless of the situation.

As a friend or family member, keep this in mind. If you are calling and getting the same answer that they are fine and do not need anything, if this does not feel right, if your instinct is telling you something else, listen to it. Ask yourself this one question: “At what point are they going to ask me to come?” You might be surprised with the answer – it very well could be never. That answer is out of love, and is not to exclude you. They fear burdening you and upsetting your busy life. They also feel they should be able to handle this by themselves.

If you think you want to do something, just do it. Patients and caregivers don’t want to bother anyone, and sometimes they do not even know what they need. Often it can be just a warm smile, a hug or just a presence. Although you think you won’t make a difference, you have no idea how a small gesture will make someone feel. It is hard to handle mesothelioma alone, regardless of the holidays.

Please, if your instinct tells you to do something large or small, listen to it!

2015 Year in Review: Top Mesothelioma Stories

Another year is coming to a close, but for those in the mesothelioma community it is the end of another year without a cure. Unfortunately, once again, Mesothelioma Help lost a “Faces of Mesothelioma” friend to mesothelioma during the year. David Stetler, whose daughter Amanda chronicled his ups and downs during his battle with the disease, passed away on March 16 leaving many wondering if this needless suffering will ever end.

But, there has been some good news from researchers and the medical community. While they may not have brought an end to the asbestos cancer, there are many treatments in clinical trials, promising leads still in the lab, and several approved treatments now available to patients that show promise for effectively fighting back the relentless cancer.

Every year Mesothelioma Help reports on the top mesothelioma stories of the year, and below we highlight some of our most important stories of 2015.

Number One MesotheliomaHelp Story of 2015

Once again, Mavis Nye of England, who has been living with mesothelioma for six years, and has been a staunch advocate for herself and for all mesothelioma patients, takes the top spot for successfully fighting mesothelioma in 2015.

In 2014, Mavis enrolled in the MK-3475 clinical trial being run at The Royal Marsden, a world-leading cancer center in the UK. MK-3475 is known as Keytruda in the U.S. where it has been approved for the treatment of advanced lung cancer and melanoma.

Mavis was one of the first mesothelioma patients in the UK to participate in the trial designed to test the efficacy of the drug, developed by Merck, in suppressing the PD-L1 biomarker found in cancer cells. PD-L1, or programmed death-ligand 1, is a protein that has been shown to play a role in suppressing the immune system during cancer and other diseases.

Mavis announced in her Nov. 17 blog that her doctors told her during the reading of her scan results that she no longer has any active mesothelioma in her tumors. December 16 marked her 40th treatment with MK-3475. She will continue on the drug through the end of the trial, May 2016.

Patients across the U.S. are clamoring for Keytruda after 91-year-old, former president Jimmy Carter announced in December the drug helped him beat melanoma, that had metastasized to his liver and brain.

We hope all mesothelioma patients see the same results as Mavis!

PD-L1 Inhibitors in the Spotlight. In addition to Keytruda, the number one success story of 2015, various other PD-L1 inhibitors have also seen success in fighting back cancers.

Opdivo: Opdivo, developed by Bristol-Myers Squibb, is another FDA-approved lung cancer drug that works by blocking the PD-L1 protein and activating the immune system. Except for the dosing differences, Opdivo and Keytruda are comparable, according to reports.

“This is yet another example of the advances we are making in the treatment of lung cancer using the approach of targeting specific tumor genes and their mutations.”

Genentech: The company reports that its investigational, anti-PDL1, immunotherapy drug atezolizumab (previously known as MPDL3280A), has seen positive results in two Phase II clinical trials for non-small cell lung cancer patients (NSCLC). The results “showed a statistically significant survival benefit compared to chemotherapy” in patients with recurrent NSCLC with medium and high levels of PD-L1.

FDA Approvals. The U.S. Food and Drug Administration has been on a roll this year in approving anti-cancer drugs. While none of the approvals are specific to mesothelioma, those approved for lung cancer care open new doors for treatment of mesothelioma patients.

The FDA announced last month that it has approved Portrazza (necitumumab) to be administered in combination with the chemotherapy drugs gemcitabine and cisplatin to treat patients with advanced squamous non-small cell lung cancer who have not previously received cancer treatment. The approval, represents progress for patients diagnosed with metastatic squamous non-small cell lung cancer, as each new therapy advances cancer care and gives patients hope for improved outcomes.”
The FDA granted accelerated approval for the anti-cancer drug Tagrisso (osimertinib) to treat patients with advanced NSCLC. According to AstraZeneca, the maker of Tagrisso, also known as AZD9291, the drug is targeted to patients whose tumors express the EGFR mutation (T790M) and whose disease has gotten worse after treatment with other EGFR-blocking therapy. Tagrisso is the only approved medicine indicated for NSCLC patients with the EGFR T790M mutation. Researchers have found that over 50% of pleural mesothelioma patients express the EGFR protein.
On Dec. 11, the FDA announced approval of Alecensa (alectinib) for the treatment of ALK-positive NSCLC in patients who have progressed on or are intolerant to Xalkori (crizotinib). Alecensa, from Genentech, is an oral medication that blocks the activity of the ALK protein, which may prevent cancer cells from growing and spreading.

Immunotherapy. With Keytruda leading the news, developments in the field of immunotherapy for the treatment of mesothelioma have made this year particularly newsworthy.

“Immunotherapy is a new class of cancer treatment that works to harness the innate powers of the immune system to fight cancer,” according to the Cancer Research Institute. Recharging the body’s own defense mechanism, the immune system, immunotherapy therapies may hold greater potential than current treatment approaches:

To fight cancer more powerfully,
To offer longer-term protection against the disease,
To come with fewer side effects, and,
To benefit more patients with more cancer types.

MesotheliomaHelp will continue to bring articles focused on immunotherapy to our readers.

(Note: According to medical reports, immunotherapy drugs like Keytruda and Opdivo help a minority of patients, but those who respond to the treatment often do extremely well.)

COMMAND Trial Stops Enrollment. Last year the COMMAND (Control Of Mesothelioma with MAiNtenance Defactinib) trial was seen as one of the bright spots in the future of mesothelioma treatment. Sadly, this year, the clinical trial was halted after a data safety monitoring board found that VS-6063, when given to mesothelioma patients as part of the COMMAND (Control Of Mesothelioma with MAiNtenance Defactinib) trial, did not produce “a sufficient level of efficacy” to justify continuation.

About Mesothelioma

Mesothelioma is a deadly cancer of the lungs, heart or abdomen, caused by past exposure to asbestos. Mesothelioma has a long latency period where those exposed to asbestos may not exhibit symptoms for nearly 60 years after exposure. Mesothelioma can be treated with surgery, chemotherapy and radiation, however, the likelihood of recurrence of the cancer is high. There is no cure for mesothelioma.

Know more about Mesothelioma and how you can deal with it.

The Waiting Doesn’t Have to be the Hardest Part

Waiting for something to happen, whether you anticipate good news or bad, can be excruciating. Children waiting for the holiday feel every moment as if it is forever. They are anticipating a happy event. On the other side of that, for a mesothelioma patient waiting for lab results, the results of which will determine his or her course of treatment and next steps, the waiting is also excruciating.

People wait in our health care system for everything. For appointments, for doctors, nurses, phlebotomists, every aspect of care can involve a wait. A 2014 study found the average wait time in a doctor’s office is 20:16 minutes and is only getting longer.

What can you do to pass the time when waiting for an appointment for yourself or a loved one with mesothelioma? In an article by Lynne Eldridge, M.D., titled “Waiting Room Survival Kit- Activities to Combat Boredom,” she suggests instead of focusing on “losing” time, view this time as an opportunity to do something you enjoy- something you wouldn’t ordinarily do. Read a book that you have not had time to, talk with another patient who is also waiting and wants to talk. Bring a friend or family member with you and catch up. In our busy lives, when have you had the time to talk to someone without interruptions for 20 minutes?

Some of her other suggestions include writing a letter, often we have been meaning to do it but don’t have time. Balance your checkbook, work on your taxes, take a nap, make a to-do list, learn more about your portable device features.

Over the years there have been many lasting relationships formed in the waiting room. Patients and families waiting for the doctor in the mesothelioma clinic all have something in common: their journey with mesothelioma. Although I think the average waiting time in mesothelioma clinics is longer than 20 minutes, we have seen bonds that last a lifetime between patients and families.

However long the wait, whatever the reason, please know on the other end, if you are a mesothelioma patient, the team will do their best for you. Save your energy for positive thoughts to fight mesothelioma, possibly with a new supporter you met in the waiting room.

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