When MesotheliomaHelp first introduced Mavis Nye of England to our readers in 2013, she had been fighting mesothelioma for four years. At that time, she was deep in the throes of the battle of her life and was relentless in her search for a clinical trial that could extend her life. She was nearly resigned to the fact that mesothelioma would lead to her demise, saying, if not for mesothelioma, “I could have lived to 99 like my mother did.”
Now, three years later, Mavis not only found that clinical trial, but she has also completed it. And her doctors have declared her free of the cancer she calls “Mr. Nasty.”
In June, Mavis completed the MK3475-28 two-year clinical trial at the Royal Marsden Hospital in London. Mavis received the immunotherapy drug pembrolizumab, known as Keytruda in the U.S., that saved former President Jimmy Carter’s life and is taking the cancer community by storm. Her 99th birthday is more of a reality now than a dream!
“It has been a rollercoaster ride, as I’m the only person in the U.K. to be able to say I’m in remission.” Mavis told MesotheliomaHelp.” Ray [Mavis’s husband of 56 years] treats me as if I was a bit of fine porcelain. Everyone is just letting me do all I want to, and I’m getting stronger each week.”
Mavis has shocked the medical community, the mesothelioma community, her family, and herself by not only surviving, but defeating mesothelioma. Over the years, Mavis had continued to stamp out the asbestos-caused cancer every time it reared its ugly head. But after too many failed rounds of chemotherapy, Mavis had to fight with every breath she had to get into the clinical trial.
“I know what it’s like to chase trials,” Mavis said in a June 5 Facebook post when advocating for another rare disease sufferer to get access to an unapproved medicine. “I have found one and had complete response.”
Expert Insight“I would be dead by now if I hadn’t found the Keytruda trial.”
Even with all the celebration of the good news, Mavis, her family, and her doctors know that mesothelioma could creep back at any time. The medical community is still not willing to say mesothelioma can be cured, and Mavis continues to echo that sentiment.
Mavis proudly states that she is in remission, but “I say that with my fingers crossed.”
“My family has the same reservations as me, as my son said, ‘Mum, I have buried you three times. I can’t believe you are back with us!’ ”
If things do go wrong, as Mavis puts it, and her mesothelioma recurs, she will be eligible for 10 more infusions of Keytruda.
“I pray it doesn’t return,” says Mavis, “and that my immune system can get its memory and know when a cancer cell is trying to get back, it will zap it.”
Mavis Offers Pointers to Mesothelioma Warriors for Clinical Trials
Mesothelioma research is at an all-time high, and patients are needed in all of the clinical trials to ensure the next effective treatment reaches others quickly. Mavis knows that the MK3475-28 clinical trial has given her her life back, and she has been very vocal about pushing for the drug for all mesothelioma warriors, or at least opening more trials up to those suffering from the cancer.
In a speech he gave on May 3 at the International Mesothelioma Interest Group Conference in Birmingham, U.K., Ray describes his wife’s condition and the stress on both of them prior to being accepted into the trial:
“MORE agonizing weeks passing in which I could only sit and watch her condition deteriorating fast. She was by now in a bad place. Unable to walk, supported by a walking frame and sticks, constantly falling over.”
The trial that Mavis participated in was not without struggles either. Every two weeks for two years, she and Ray were up and out the door at about 5 a.m., facing a long drive to the hospital, a long day at the hospital, and then another long drive back home. Mavis also faced several health issues along the way and spent some time in the hospital as she recovered.
In the long run, neither of them would have passed up this opportunity for anything.
“Now we hope to live the rest of our lives in happy cancer-free days,” Ray says.
Mavis gives the following tips for anyone interested in participating in a mesothelioma clinical trial:
- Newly diagnosed warriors should undergo their initial treatments, including chemotherapy, and give the drugs time to “hit it back” and give you time to find the appropriate trial.
- Be wary of participating in a placebo trial where you may have no hopes of benefitting from the drug.
- Once accepted into a trial, Mavis says, “Believe it is going to work!” A positive attitude can go a long way.
- Be prepared for a long day each time you go in for your trial care. “Take plenty of magazines for each visit, as it is a long day waiting for blood results and then the drug.”
- “Wear comfortable clothes.”
- Eat “just what you fancy,” but also make sure to eat plenty of fruit and drink plenty of fruit juices.
Conserving Her Energy to Continue the Fight
There’s a metaphor called the “spoon theory” that is often used to explain how an illness or disease reduces the amount of energy a patient has. A person uses spoons when energy is expended and gets a spoon back when they are feeling recharged. The idea is that a patient must conserve spoons.
“I have been to a place 2 years ago where all my spoons were taken away, now I’m being given them back one by one,” Mavis says in her June 3 blog. “I’m so happy, and I will use them wisely, I promise. I have so much work to do as the battle for Asbestos Awareness is not over, and I have now to battle for more research into Mesothelioma and get drugs through to Mesowarriors so that they can have their spoons given back.”
For technical information about the trial, visit ClinicalTrials.gov.
Watch this space for a follow-up blog about Keytruda.
Follow Mavis and Ray online:
OneStop Mesothelioma – Contains information and resources about mesothelioma and asbestos
Living with Mesothelioma – Mavis’s Diary
Meso Warrior – Mavis’s book available on Amazon.com