As part of my personal healing process, I joined a U.K. Facebook group for people who have lost loved ones to mesothelioma. Having lost my father in 1993, I still have strong emotions surrounding our loss.
What I found in this online group is nothing short of amazing. I sought comfort and support, and I met many others who experienced similar emotions. In addition to the expressions of anguish and loss, I found the promise of a new day for all families affected by mesothelioma.
I also found Mavis Nye.
She reminds me of everyone’s classic conception of a loving grandmother. Her smile is infectious and beckons one in return. The 75-year-old enjoys spending time with her husband Ray in their London home. Nye also enjoys traveling and spending time with family.
But her sweet demeanor may be a little misleading. She is, in fact, a mighty warrior.
Remaining Positive While Living with Mesothelioma
In June 2009, doctors diagnosed Nye with pleural mesothelioma. Her prognosis: Three months.
Nye didn’t crumble under devastation, cry or experience anger — as most people do when diagnosed with an incurable cancer. Instead, she took a positive approach.
“I have just got on with the fight for life. I was so determined to beat it,” Nye wrote me in an email. “I cry when I lose so many friends to the disease.”
Nye’s attitude helps her fight mesothelioma. She and her family have made it through some of the bleakest moments of her journey by remaining positive.
“Everyone said I made it so easy for them as I was always laughing,” Nye said. “Even when I had [chemotherapy] and it was so toxic, I laughed as I pushed a walking frame. I was too busy finding [clinical] trials.”
What makes Nye’s plight so remarkable is that she doesn’t only fight for her own life; she fights for the lives of all those affected by mesothelioma. She works diligently to advocate for fellow patients. Her numerous speeches, interviews and publications serve as reminders of her hard work.
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Nye serves as a patient representative at the National Health Service in the U.K., and she works with Dean Fennell, a professor at Cancer Research UK. She draws on her experience of having mesothelioma and participating in clinical trials to guide professionals like Fennell find more effective treatments.
In January, Nye received the British Citizens Award for service to health care. The British Citizens Award presented the award for her selfless work advocating for fellow patients and educating the public.
She tirelessly attends conferences, gives television and radio interviews and has written several books. Nye educates others about the dangers of asbestos and paves the way to better treatment options for mesothelioma patients.
The Asbestos Disease Awareness Organization in 2013 honored her with the Alan Reinstein Award.
Nye Builds Online Mesothelioma Support Network
Nye uses her website to raise awareness and provide support to those with mesothelioma.
She also uses Facebook to warn followers of the dangers of asbestos and recent incidents of public exposure.
Positive Response to Keytruda Clinical Trial
Nye attributes her longevity to numerous chemotherapy treatments, surgery and a Keytruda clinical trial.
Immunotherapy drug Keytruda, manufactured by Merck & Co., made news in 2015 when former President Jimmy Carter credited the drug for sending his melanoma into remission.
In May 2014, Nye began receiving Keytruda injections in a U.K. clinical trial. A year and a half after initial treatment, her oncologists said Nye had no physical evidence of mesothelioma. In April 2016, her doctors reported a “complete response.”
Her experience with Keytruda is a beacon of hope for all mesothelioma patients and their families.
‘I’m Always on Tenterhooks’
Nye undergoes a scan every two months to search for any evidence of mesothelioma. She said that awaiting the results makes her feel uneasy because they have such significant implications for her.
Her anxiety is a common response.
“I’m always on tenterhooks as I have a scan every two months [because] it can hold the future in my hands. If [the cancer is] growing again, I have another battle on my hands and more traveling and more drugs to fight it with,” Nye said. “But when I get a good result, I go silent and just feel so grateful to Merck, the Royal Marsden and all the wonderful doctors.”
The Royal Marsden is a cancer center in London.
Mesothelioma communities around the world are watching Nye’s progress and her family. Her continued success with her treatment could provide a closer step toward a cure for so many others affected by the disease.
Nye’s advice to those coping with mesothelioma: “Just to never give in. I always tell mesowarriors to have chemo that knocks it back and gives you time to find trials.”