Mesothelioma Patients Can See Improved Survival By Reporting Side Effects

Chemotherapy and other treatments for mesothelioma can lead to debilitating side effects such as pain, nausea and fatigue. But patients often suffer in silence with their symptoms which, when left untreated, can lead to severe complications, and even death. Now, researchers say it does not need to be that way, and, in fact, by opening up to their physicians, patients can improve their quality of life and their survival.

Researchers from Memorial Sloan Kettering Cancer Center followed 766 advanced cancer patients undergoing care at the Center, according to a June 4 report from ABC News (https://abcnews.go.com/Politics/wireStory/emergency-bill-fund-veterans-affairs-department-32742493). Hoping to catch issues before they became severe, researchers gave some of the patients access to an online tool to report to their medical team weekly, or more often if they experienced unusual or severe symptoms. The patients self-reported information on 12 common symptoms including appetite loss, diarrhea, shortness of breath, fatigue and pain.

After just six months, the patients in the online reporting group had an improved health-related quality of life and fewer trips to the emergency room. In addition, overall, they stuck with the chemotherapy treatment two months longer, eight months as opposed to six months in the non-online group.

Surprising even the researchers, median survival of the patients in the online group was nearly six months longer at 31 months versus 26 months for the control group. Researchers believe the survival was tied to early responsiveness to patients’ symptoms that prevented “adverse downstream consequences” and increased tolerance to chemotherapy allowing them to continue on the treatment beyond usual care.

“I was floored by the results,” said the study lead, Dr. Ethan Basch, a researcher at the University of North Carolina-Chapel Hill and Memorial Sloan Kettering Cancer Center in New York. “We are proactively catching things early.”

When a patient reported a concerning health issue, a nurse responded immediately almost 80 percent of the time. They would get the patient prescription medications, or appropriate care, to handle their specific issues. The tool gave the patients an easy way to report issues without struggling to get through to their doctor or wait for their next appointment.

The researchers concluded, “Electronic patient-reported symptom monitoring may be considered for implementation as a part of high-quality cancer care.” They now plan to launch a larger study to test the online reporting system nationwide.

Mesothelioma is diagnosed in approximately 3,000 Americans each year. Although treatments increase survival, countless mesothelioma patients have said the treatment is worse than the disease. That is not necessarily the case, and patients should not hesitate to reach out to their medical team to help alleviate some of their side effects.

Results of the study were presented at the 2017 ASCO Annual Meeting in Chicago. Find the full study in the June 4 issue of Journal of the American Medical Association (http://jamanetwork.com/journals/jama/fullarticle/2630810).

Mesothelioma Patients May Have Another Treatment Option With FDA Expanded-Use Approval of Lung Cancer Drug

In September, MesotheliomaHelp reported that Italian researchers found the response to ceritinib (Zykadia), an anti-cancer drug, was nearly immediate in non-small cell lung cancer patients who were previously treated with chemotherapy and crizotinib (Xalkori). Now, the U.S. Food and Drug Administration has granted approval for expanded use of the drug to include the first-line treatment of NSCLC patients with ALK-positive tumors, opening the door for another treatment option for mesothelioma patients.

Ceritinib, marketed as Zykadia by Novartis, is intended for the treatment of metastatic NSCLC in patients who express the abnormal anaplastic lymphoma kinase (ALK) gene. Approximately 3%-5% of people with NSCLC may test positive for the ALK fusion gene. There is a potential that the marker is also present in certain pleural mesothelioma cases making it a new treatment option for the cancer.

In a May 26 press release from Novartis, the company reports that of the 376 patients in the study, those receiving Zykadia as first-line treatment realized a 16.6 month progression-free survival versus 8.1 months in patients treated with pemetrexed-platinum chemotherapy first-line regimen.

“Today’s approval represents the next step in the development of Zykadia as a treatment option for ALK-positive metastatic NSCLC, bringing this important medication to a patient population where a need still exists,” said Bruno Strigini, CEO, Novartis Oncology.

Pleural mesothelioma patients and oncologists keep a close eye on research and breakthroughs that impact NSCLC patients. Although the two cancers have some differences, including the structure of the tumors, patients often follow a similar treatment protocol.

“At Novartis, we are tireless in our pursuit of developing novel medicines to treat lung cancer, and the first-line approval of Zykadia for ALK-positive metastatic NSCLC illustrates our commitment to cancer patients,” said Strigini.

Close to 3,000 patients are diagnosed with mesothelioma each year in the U.S. Although survival has improved in recent years, there is still no cure for the asbestos-caused cancer.

To find out if you may be a candidate for Zykadia, talk to your medical professional. Visit the Novartis website for more information.

ADAO Releases PSA to Draw Attention to the Sad Truth of Asbestos Exposure

With a mission to educate Americans, and the world, about the dangers of asbestos, the Asbestos Disease Awareness Organization often has to present the cold, hard facts of the dangers of asbestos. In a public service announcement released last week, the ADAO does just that by depicting the story of a young girl whose father died from the toxic mineral.

In partnership with Chocolate Moose Media, ADAO developed a 30-second video, “Asbestos: The Killer You Can’t See,” with a goal to spread asbestos awareness to youth, families, and workers around the globe, according to a May 16 press release from the ADAO. The video, that uses hand-drawn animation, depicts a young girl who loses her father to an asbestos-related disease.

http://www.asbestosdiseaseawareness.org/archives/43675

“Our goal was to make an emotional connection to the danger of asbestos rather than overwhelm viewers with statistics,” says Linda Reinstein, mesothelioma widow and President/CEO and co-founder of ADAO. “The simple truth is asbestos kills and prevention remains the only cure.”

Exposure to asbestos is the direct cause of multiple diseases including mesothelioma, asbestos is and lung cancer. Exposure tends to occur among workers in the construction, electrical, plumbing, boiler, auto and maritime industries, particularly during the removal of asbestos materials due to renovation, repairs, or demolition, according to the U.S. Occupational Safety and Health Administration.

When asbestos fibers become airborne they can easily be inhaled or ingested by workers or others nearby. The human body does not have the ability to break down these fibers, and the fibers can become lodged in the lining of the chest or abdomen, where, over the years, they begin to irritate the tissue, leading to mesothelioma.

The World Health Organization estimates that asbestos causes approximately half of all deaths from occupational cancer. In addition, 125 million people worldwide are exposed to asbestos in the workplace and nearly 107,000 die annually from asbestos exposure.

For this reason, the ADAO is reaching out across the globe and is offering the PSA in English and five other languages— Russian, Hindi, Portuguese, French, and Spanish. According to the press release, it is important to reach people in nations that continue to mine, use, and export asbestos.

Approximately 3,000 Americans die from mesothelioma each year. There is no cure for the cancer, and the only way to prevent it is to avoid exposure to asbestos.

“People are often unaware of the dangers posed by certain substances,” says Firdaus Kharas, founder of Chocolate Moose Media. “The lack of information can lead to deadly consequences. In this compelling hand-drawn video we warn about asbestos.”

Do your part to help ADAO get the word out about the dangers of asbestos. Share the video through your social media accounts.

Watch the PSA Video Here

About the ADAO

The Asbestos Disease Awareness Organization (ADAO) was founded by Linda Reinstein and Doug Larkin in 2004 and headquartered in Redondo Beach, California. ADAO is the largest independent 501(c)(3) nonprofit in the U.S. dedicated to preventing asbestos exposure, eliminating asbestos-related diseases, and protecting asbestos victims’ civil rights through education, advocacy, and community initiatives.

To find out more about ADAO visit its website at http://www.asbestosdiseaseawareness.org.

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/

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

Author: Nancy Meredith