Mavis Nye Foundation - Fund Research for Mesothelioma

Mavis Nye Takes Patient Empowerment to a New Level, Starts Foundation to Fund Mesothelioma Research

It has been nearly one year since Mavis Nye completed a life-saving clinical trial at the Royal Marsden in England. The 75-year-old British woman who has battled mesothelioma for the last eight years went from a frightened, sick patient lost in a medical maze, to the first UK patient to claim remission from the cancer.

Mavis fought nearly every step of the way to ensure that she got the right care at the right time that would help keep the cancer at bay and keep her alive. She has proven that a mesothelioma patient can regain her health and her life by taking control of her own care, and she showed that an empowered patient has the best chance at survival.

Throughout her fight, though, Mavis never gave up on her fellow mesothelioma warriors as she battled for care for them as well. She plans on continuing that fight for others as she takes the helm at the Mavis Nye Foundation (MNF).

“I will be leaving a wonderful legacy that was always a dream of mine to raise money for research so that I pay back for such wonderful treatment that has kept me alive!” Mavis told Mesothelioma Help.

Mavis worked with a variety of people, including Trevor Sterling, Partner for Medical Relations at Moore Blatch Solicitors of London, and one of the UK’s leading major trauma lawyers, to get the foundation off the ground.

On April 27, Sterling made the following announcement on Facebook:

“A couple of years ago I read about a wonderful lady who had miraculously won her fight against Mesothelioma (an aggressive terminal cancer). She was given 3 months to live yet 8 years on she has become the most prolific asbestos campaigner. So inspired I went to meet her at the Marsden – she and her husband Ray are the most incredible people. They deserve a legacy so I am so thrilled that we have this week established the Mavis Nye Foundation.”

The MNF gives Mavis a forum to continue all of the advocacy and education work she has been doing since diagnosed with pleural mesothelioma in 2009. Mavis, who received the prestigious British Citizen Award in the category of “Service to Healthcare” in January 2016, can now give back to the community that has cheered her on throughout her highs and lows.

“Mavis has turned her battle with mesothelioma into something positive, and is making her voice heard to educate people about this illness,” said Angela Caulfield in her nomination of Mavis to the British Citizen Award.

Mavis Nye, BCAh, now proudly adds President, Mavis Nye Foundation to her signature block. Ray Nye, Mavis’s husband who has been by her side for 57 years and has been her rock during her battle with mesothelioma, will take a place on the MNF as Vice Chairman and Trustee.

“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,” said Mavis.

The Mavis Nye Foundation Supports Patients, Research and the Medical Community

Mavis has always been thankful for the medical care she received, and she credits every one of the medical team members she encountered for keeping her alive far beyond her expectations. But, she also realizes that not all patients have access to such good care.

In June 2016, Mavis completed the MK3475-28 two-year clinical trial at the Royal Marsden Hospital in London where she received the immunotherapy drug pembrolizumab, known as Keytruda in the U.S. For Mavis, the results gave her a new life, and, according to a March 10, 2017 article in The Lancet, the drug is a suitable treatment option for patients with malignant pleural mesothelioma offering a “substantial duration of response.”

“All I can say is that at The Marsden, and Dean Fennel [visiting Senior Lecturer in medical oncology at Bart’s and Cancer Research UK Clinician], they all call me the star of the immunotherapy. Jeremy Steel [Co-Director of Bart’s Mesothelioma Research] in a speech recently said that they look at my case to prove that immunotherapy can work,” said Mavis.

It is this kind of response that has Mavis enthused about “funding more trials,” championing research and encouraging young college students to take on a career in the medical profession with an eye towards caring for mesothelioma patients.

As president and founder of the foundation, Mavis will guide the organization to focus on three critical areas of mesothelioma: the patient, research, and the medical staff.

The MNF will offer the following support:

Financial support to UK patients diagnosed with mesothelioma or other asbestos-related diseases requiring assistance to access medical treatment, in particular, experimental medical treatment.
Grants for the advancement of laboratory and clinical research in the UK for the treatment of mesothelioma and other asbestos-related diseases.
Assist in the treatment and care of persons suffering from mesothelioma by awarding scholarships or grants for attendance at British higher education institutions for health professionals in financial need who will focus on mesothelioma nursing in the UK.

“I have so many people contacting me about the Mavis Nye Foundation it’s just amazing how it has been accepted by others,” said Mavis. “Charities, support groups, and everyone is congratulating me.”

Many factors can influence a patient’s survival, but being empowered to find the right medical care and to proactively manage the mesothelioma is the strongest weapon in fighting the disease and improving the patient’s outcome. Mavis is living proof of that, and she is not planning on giving up on herself, or others, anytime soon.

“I’m 75 now and proud to have lived this long and I never thought 8 years ago I would,” said Mavis. “My next target is our 60th wedding anniversary in 3 years time –I want to make that.”

Work is ongoing to get the MNF website established and ready to accept donations. If you would like to make a donation to the Mavis Nye Foundation now, contact Mavis at [email protected].

Read more about Mavis and Ray’s Journey on MesotheliomaHelp:

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

Sources :

Mesothelioma UK
http://www.mesothelioma.uk.com/
Mavis and Ray’s Bookstore
http://www.lulu.com/spotlight/nyeray7070
British Citizen Award
http://britishcitizenawards.co.uk/mavis-nye/

Morning Reflections at Mesothelioma Clinic

The other day I paused to reflect as I saw patients and families in various stages along their journey with mesothelioma. I am fortunate enough to follow up with patients on an outpatient basis, and it is so rewarding to see patients progress back to their lives.

There is a young girl with mesothelioma who had treatment a year ago who is now back in school. Her course has been long and complicated, but here she was proudly talking about her job and classes. Most importantly she had started to regain some of the weight she had lost.

There is a gentleman who I had seen in December who also has had his fair share of bumps in the road. I actually had to look twice to know that this was the same man. He walked down the hall with his chest out and a sparkle in his eye. He was facing radiation and he felt he was mentally and physically ready for it. The next patient is a man who had surgery three months ago and is doing well. He had put on a little weight, and still had some pain, but he was home and his life was manageable.

One of the patient‘s caregivers, who is a cancer survivor as well, was speaking of the importance of perspective. After a cancer diagnosis, she said every ache and pain makes you wonder if it is cancer related. She spoke about the fine line between vigilance and just driving yourself crazy with the possibilities. We talked about how negative thoughts can sneak in. Her solution to that is to get busy and live in the moment. We actually only have this very moment now!

To top off this special morning, a physician who I was speaking with was also checking his e-mail, and he let out a resounding “YES!!!” A smile filled his face as he read that he had just been notified about approval for a trial to which he had submitted. His delight in hearing the news was contagious.

This is what is special about mesothelioma patients and their team. Hope for continued progress for a disease that was once a death sentence, by people who are passionate about helping to improve the quality of life for others.

Blood Test May Lead to Faster Time to Treatment for Mesothelioma Patients

MesotheliomaHelp has reported various times on the development of blood tests for diagnosing and assessing the progress of mesothelioma and other cancers. The tests are favored over traditional tissue biopsies due to the quick results and for being non-invasive. Now, researchers report they are developing a blood test that can identify genetic mutations in non-small cell lung cancer patients and return the results within three days.

A team of researchers from Biodesix, Inc., a U.S. company that discovers and commercializes cancer diagnostic tests, reports that through the use of Droplet Digital PCR (ddPCR), a highly sensitive gene-mutation detection method, they developed a blood-based test that can accurately identify several of the most common genetic mutations in lung cancer patients. In fact, they “generated test results successfully for 98% of tests submitted,” with 94 percent of the results available within 72 hours, according to an April 5 article on the Biodesix website.
http://www.biodesix.com/utility-of-a-targeted-nsclc-genomic-test-for-cfdna-variants-in-the-community-setting/

“Time to treatment can have significant impact on progression of cancer and treatment decisions rely heavily upon genomic and proteomic testing,” noted the researchers. “Results from tissue-based testing can take weeks to obtain and can delay time to treatment.”

Find out about other blood test breakthroughs here and here.
http://www.asbestosdiseaseawareness.org/

Due to the aggressive nature of both lung cancer and mesothelioma, an asbestos-caused cancer, when a patient is diagnosed with either of these cancers treatment should begin as soon as possible in order to quickly fight back the disease. However, according to the Biodesix researchers, led by Gary A. Pestano, Ph.D., oncologists are often delayed in beginning a patient’s therapy while awaiting results from genetic testing so they can offer personalized treatment. Test results can take weeks to be returned and by that time, oncologists and the patients may determine any generic treatment is better than a delayed, targeted therapy.

Although mesothelioma and lung cancers present with different tumor structures – mesothelioma is a spider-web-like weave of tumors on the lining of the lungs, whereas lung cancer is a single mass – the treatment protocol for the two is similar. Treating the cancer patients based on their genetic makeup, called targeted or personalized therapy, increases the chance of success. The Biodesix blood test focuses on identifying the EGFR, ALK and KRAS mutations in NSCLC patients. All three of these biomarkers have been the target of researchers hoping to develop new, more effective therapies for the cancers, and the presence of these biomarkers in a patient can point to a specific anti-cancer therapy.

In the study, the researchers analyzed over 1,600 blood samples from NSCLC patients, according to an April 19 article in Medical News Today. The results identified the mutations as follows: EGFR mutations sensitive to tyrosine kinase inhibitors in 10.5 percent of samples; 18.8 percent of samples had EGFR mutations resistant to tyrosine kinase inhibitors; KRAS gene mutations in 13.2 percent of samples; and two percent of samples with the EML4-ALK gene.

“We have developed rapid, highly robust, and sensitive blood-based assays to expedite time to treatment and expand the laboratory testing options for patients with NSCLC,” the team reported.

Pleural mesothelioma is a cancer of the lining of the lungs caused by past asbestos exposure. The terminal cancer is diagnosed in close to 3,000 Americans each year.

Read the full study in the May issue of The Journal of Molecular Diagnostics.
http://jmd.amjpathol.org/article/S1525-1578(17)30094-6/fulltext

Mesothelioma Patients Need Time and Listening Ear

Mesothelioma Patients Need Time and a Listening Ear

My last blog was about a mesothelioma patient having a slow recovery and questioning if having treatment was a mistake. She had a course that was riddled with complications and it was hard for her to see any end in sight. When I saw her, she was clearly not feeling well and was discouraged. I am happy to report now that with some medication adjustments and time she has turned the corner. She is feeling better, has more energy and is on her way home. Was it changing her medication, time or a combination of both?

Reflecting on this patient and her experience two things come to mind: time and listening. We cannot control an individual’s recovery. We cannot control an individual’s response to treatment or the time it takes to recover. As everyone’s journey is different, it is hard not to compare progress, especially when everyone else seems to be doing better. Sometimes, though, it just takes time: time for the medicine to work, time for the incisions to heal, time for the pain to ease.

Another thing that people who are recovering from treatment need, but is often overlooked, is for someone to listen to them. When patients are not feeling well, people may tell them how much better they look and how well they are doing, when in fact, they just want to say, “Today I don’t feel well, and I am not sure I ever will.”

Another patient told me that according to his family and friends he has never looked better since being diagnosed with mesothelioma. He knew their intentions were good, but he also knew he was not feeling well, despite how he looked. People are well intentioned, but sometimes instead of being the cheerleader, just listen and hope tomorrow will be better for your loved one.

Time is a variable in the recovery process, and everyone’s recovery is different, but never underestimate the power of listening.

As Leo Buscaglia said, “Too often we underestimate the power of touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”

Contest Could Bring Handheld Medical Tool to Mesothelioma Patients

One of the props used by Dr. McCoy, of the iconic 1960s television series Star Trek, was the Tricorder. With a point, swipe, and beep, the doctor could examine and diagnose the USS Enterprise’s crew members. Now, thanks to a contest, this science fiction device may soon become a reality bringing “healthcare to the palm of your hand,” and helping mesothelioma patients avoid some of their countless medical appointments.

The Qualcomm Foundation, along with the world’s leading visionaries, hold a three-day summit each year to brainstorm ideas to help mitigate some of the challenges facing the world. The goal is to create an incentivized global competition that could lead to a solution to the problem. In 2012, the summit attendees focused on healthcare.

With all the technological advances, the team thought, it is inconceivable that an individual has to physically go to a healthcare facility, clinic, or doctor for a diagnosis of any condition. They felt this model of health care has led to bottlenecks to access of care, backlogs in laboratories, and a rise in healthcare costs. The visionaries agreed that a medical device, for consumers, could be designed to address this problem. The Qualcomm Tricorder XPRIZE competition, with a total prize package of $10 million, was conceived to spur the creation of Dr. McCoy’s Tricorder.

U.S. Team Takes Top Prize

On April 12, 2017, the U.S. team, Final Frontier Medical Devices, based in Pennsylvania, was announced the winner of the nearly five-year competition netting them $2.6 million to help bring the prototype to reality. Led by two brothers, Dr. Basil Harris, an emergency medicine physician, and George Harris, a network engineer, the team created DxtER.

The second place winner, Dynamical Biomarkers Group of Taiwan, received $1 million to help bring their device to fruition.

“It is very exciting that our vision of mobile, personalized patient-centric healthcare is getting closer to becoming a reality thanks to the great work of the Qualcomm Tricorder XPRIZE teams,” said Dr. Paul E. Jacobs, executive chairman of Qualcomm Incorporated, in an April 13 press release announcing the winner. “Creating technology breakthroughs in an industry as complex as healthcare is quite a milestone, and what these teams accomplished is a great stepping stone to making mobile healthcare a viable option across the world.”

The field began with 312 teams from 38 countries all working to create a Tricorder prototype. During the multi-year competition the field was narrowed to 29 teams from nine countries, and finally to two finalists from two countries. The two final teams, representing the U.S. and Taiwan, were chosen in December 2016.

Five-Pound Device Houses Complex Functionality

“Our device is smart and simple, giving people the help and answers they need when they need this input the most,” said Dr. Basil Harris, founder of Basil Leaf Technologies, in a press release announcing his team’s success.

The final product had to adhere to strict requirements such as allowing an individual to determine if and what care is required without leaving home; it should weigh no more than five pounds; it must collect, store, and share vital health data via the internet; and cause no harm to the consumer either by thermal or electrical energy, needles, lancets, or infections.

Expert Insight

Dr. Basil Harris

“There is nothing like it in existence, and we believe this technology will change the face of health care.”

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In order to diagnose patient conditions, the device must be capable of collecting key health metrics like blood pressure, respiratory rates, and temperature over time and in various health states. The volume of data accumulated over time will allow the device to determine the consumers health conditions without expensive or invasive laboratory tests.

The winning prototype was to capture five real-time health vital signs, blood pressure, heart rate, oxygen saturation, respiratory rate, and temperature and identify 10 health conditions. The health conditions include: anemia, A-fib, COPD, diabetes, leukocytosis, pneumonia, otitis media, sleep apnea, urinary tract infection, and shingles. It must also be able to determine the absence of any condition allowing the patient to avoid unnecessary medications.

DxtER, the winning tool, is capable of diagnosing 34 health conditions.

Tricorder Benefits for Mesothelioma Patients

For mesothelioma patients and their caregivers, being able to determine, from the comfort of their home, what and if medical care is required, has significant benefits. Early detection of pneumonia, for example, can mean the difference between treatment at home and complications requiring hospitalization.

Mesothelioma, a rare cancer causally linked to asbestos exposure, is typically diagnosed in patients over the age of 65. At that age, many patients may have unrecognized medical problems that also need to be addressed. However, with the toll mesothelioma takes on a patient, symptoms that may mean a heart condition or diabetes often go ignored simply because of the burden of another round of doctors’ appointments and tests.

With the possibility of having their own diagnostic device at home that can collect their health data, assess the illness, and determine the appropriate course of action, whether that requires medical intervention or not, mesothelioma patients will feel more empowered, less stressed and may realize a better quality of life.

The device “gives users access to continuous, reliable health data – the information patients and providers need to more effectively manage chronic health conditions, such as diabetes and congestive heart failure,” according to Basil Leaf’s website.

With the advancements in mesothelioma care bringing the cancer closer to being a chronic disease, this device can allow patients to focus more on their lives and less on their illness.

The Qualcomm Foundation, and other strategic partners, are committed to seeing the Tricorder competition bring marketable products into the hands of consumers, and they have pledged millions of dollars in initiatives to support the teams.

To find out more about this exciting project visit the Qualcomm Tricorder XPRIZE website.

Photo Credit: Qualcomm Tricorder XPRIZE

Sources:

Qualcomm Tricorder XPRIZE competition
http://tricorder.xprize.org/
Basil Leaf’s website
http://www.basilleaftech.com/dxter/
Basil Leaf Technologies
http://www.basilleaftech.com/blog-1/
Dr. Paul E. Jacobs, executive chairman of Qualcomm Incorporated
http://tricorder.xprize.org/press-release/family-led-team-takes-top-prize-qualcomm-tricorder-xprize-competition

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