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Dad's Enthusiasm For Mesothelioma Advocacy

Dad’s Enthusiasm For Mesothelioma Advocacy Keeps Me Going

After my father’s surgery at NYU Langone, he stayed with my husband and me for about a week before making the final three hour trek home. It was during that time that we started talking about fundraising for the Mesothelioma Applied Research Foundation. Dad was excited about it, you could see the gleam in his eyes. He loved being a part of events and parties, and this was something personal to him. He was all in!

Our first fundraiser was at Dunbar Community Fest in the town where he lived his entire life. As we began to plan our part, donations started coming in from family and friends. We were overwhelmed by the outpouring of generosity and love. The morning of the event, we set up and began waiting for the crowds to arrive.

I will never forget watching Dad that day. He almost served as the “ambassador” of our little tent. He stood out in front, talking to everyone and greeting them with a smile. Living in a small town, everyone knows each other. My father was well-loved, and the entire community was happy to see him doing so well and present for the event.

When we finally packed up and headed home, Dad was grinning ear to ear, talking about all the people he saw that day, and humbled by all the prayers and well wishes offered to him.

Throughout the rest of his life, Dad was always involved in any fundraisers that we did. Shortly before he passed away, he missed the Community Fest because he was in the hospital. I know he was sad to miss it, but encouraged us to go forward with our booth, knowing it was meant to help others.

He is my inspiration for continuing to help this cause. Even when he was down, Dad was a light to others in ways he never knew. I am proud to continue the work on his behalf, knowing he is smiling down on us from Heaven.

Older Mesothelioma Patients

Older Mesothelioma Patients “Less Likely” to Receive Treatment

Last week, MesotheliomaHelp reported on the benefits of mesothelioma patients receiving trimodal therapy. Now, in another study aimed at better understanding the patterns of mesothelioma care and the associated survival, researchers found a startling number of untreated mesothelioma patients in the U.S.

Researchers from the National Cancer Institute reviewed the data of mesothelioma patients, identified as such from the Surveillance, Epidemiology, and End Results (SEER) Program of the NCI. SEER provides information on cancer statistics in an effort to reduce the cancer burden among the U.S. population. The data backed findings that mutli-modal therapy is best, however, the researchers discovered that nearly one-third of U.S. mesothelioma patients do not receive cancer therapy.

The study reviewed records of 389 pleural mesothelioma patients and 53 non-pleural mesothelioma patients, all of who were diagnosed in 2011. The researchers highlight the following key points of the study:

  • 29.3% of the pleural mesothelioma patients and 21.5% of the non-pleural patients do not receive cancer therapy.
  • Older pleural patients [older than 70-years] were less likely to receive therapy.
  • Median survival was 8 months among pleural mesothelioma patients and 18 months among non-pleural mesothelioma patients.
  • Among pleural mesothelioma patients receipt of surgery and systemic therapy was associated with the best survival.

Further information showed that, not surprisingly, younger pleural mesothelioma patients had better survival. In addition, 60 percent of the patients received some form of systemic treatment, which includes chemotherapy and immunotherapy, although the older population was “less likely” to undergo the treatments.

Patients may refuse treatment for a variety of reasons, and understanding and respecting the wishes of a patient is important. Read how one nurse explains a “Mesothelioma Patients’ Treatment Plans Can Match Their Wants.”

Of concern to the team is the fact that with all the mesothelioma research being done to find an effective treatment, and potentially a cure for the now incurable cancer, nearly one-third of the patient population could be missing out on extended survival.

Expert Insight

Lindsey Enewold, PhD, MPH, NCI

“Our findings indicate that only a subset of mesothelioma patients realize the benefit of established treatment options.”

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The researchers point out that clinical trials “offer the best hope of finding more effective treatments for mesothelioma,” yet still, less than 5% of pleural mesothelioma patients and less than 2% of the non-pleural mesothelioma patients actually participated in a trial.

“Expanding our understanding of the particular challenges to participation in clinical trials in mesothelioma is essential to making an impact on this disease,” reported the researchers.

“These findings indicate the need for efforts to ensure equitable application of currently available therapies to all patients,” concluded the authors.

According to the NCI, the major cause of malignant mesothelioma is exposure to asbestos, including people who were exposed to asbestos in the workplace and their family members. Development of mesothelioma from asbestos exposure via a loved one is called second hand exposure. Exposure to asbestos can lead to mesothelioma decades later. Nearly 3,000 Americans are diagnosed with mesothelioma each year.

Read the full study, “Patterns of care and survival among patients with malignant mesothelioma in the United States,” in the August 10 journal Lung Cancer.

http://www.lungcancerjournal.info/article/S0169-5002%2815%2900157-9/abstract

Mesothelioma Awareness Day

Be Prepared for Mesothelioma Awareness Day With the Facts

As the summer winds down and Fall approaches it is time for new beginnings. For the kids, it is the start of the new school year. For the mesothelioma community, September brings Mesothelioma Awareness Day on September 26. The day has been set aside since 2004 for the mesothelioma community to raise awareness about mesothelioma.

Over the years we have learned from the patients and families we have had the privilege to care for, that most people know two things about mesothelioma. The first is that mesothelioma is caused by asbestos. Most people then go on to say, “but we don’t have asbestos in the U.S. anymore.” The second thing that our patients have said over the years is that they have heard of mesothelioma from the television ads. They know the word, they know it is a serious cancer, but that is about it.

The Awareness day is to help the mesothelioma community enlighten more people to the facts about asbestos exposure, asbestosis and mesothelioma:

  • Mesothelioma is a rare cancer. It is less than 1% of all cancers.
  • The number of people affected in the United States is approximately 2,800 to 3,000 people a year.
  • Asbestos is not banned in the United States, it is still used in many products.

One of the most important things that needs to be emphasized, is that despite the history of malignant mesothelioma, there is hope. Hope that this disease can be cured. Hope that the doctors and researchers and scientists who have dedicated their careers to this disease, are making progress.

Raising awareness starts with all of us. There are planned events for the day including encouraging people to wearing blue, and assembling at Rockefeller Plaza in New York on the set of the Today Show to spread the word.

Awareness helps to put a face to a deadly cancer. Education and research along with hope, can only help further the work of the mesothelioma community.

On September 26, Mesothelioma Awareness Day, plan to make a difference!

Mesothelioma Treatment Deadliest Subtype Lung Cancer.

New Mesothelioma Treatment May Result From Study Focusing on The Deadliest Subtype of Lung Cancer

In February, MesotheliomaHelp reported on research from the Mayo Clinic that pointed to the Ect2 gene as a target to slow tumor growth in KRAS-positive lung cancer and mesothelioma patients. Now, in another study, researchers believe they have found one more way to fight this deadly sub-type of lung cancer.

Researchers from Norton Thoracic Institute, headquartered at Dignity Health St. Joseph’s Hospital and Medical Center in downtown Phoenix, focused their research on lung cancers expressing the KRAS and/or the LKB1 gene noting that these “mutations are associated with aggressive disease progression and poor patient prognosis, and have been historically difficult to treat.”

The team looked at the use of a WEE1 kinase inhibitor, AZD1775, an experimental drug from AstraZeneca available to researchers only, as an effective treatment in the KRAS or LKB1 expressed lung cancer population. The drug could lead to apoptosis, or cell death, upon treatment with chemotherapeutic agents such as gemcitabine, cisplatin, carboplatin, according to AstraZeneca.

The team found that in a mouse model with the KRAS/LKB1 NSCLC cell lines, the combination of AZD1775 and cisplatin extended overall survival compared with cisplatin alone. In mesothelioma and lung cancer patients, cisplatin is one of the most common chemotherapy treatments used. It is often used in combination with other chemotherapeutic agents.

“In this study, we highlight a therapeutic strategy that may be effective in a group of lung cancer patients without rational therapeutic options,” said Timothy Whitsett, PhD, assistant professor at Norton Thoracic Institute.

According to some reports, mutations of the KRAS gene (Kirsten rat sarcoma viral oncogene homolog) are found in 20 to 25 percent of lung cancers. These cancers do not respond well to standard treatments and are extremely challenging to treat. In a 2014 study conducted by Salk Institute researchers, the team found that lung cancer patients who have an alteration in the LKB1 gene had a “much greater rate” of metastasis.

Kinases function as drivers of a variety of forms of cancer, including mesothelioma. Many researchers have found that kinases are involved in the gradual transformation of normal tissue in the lining of the lung into malignant pleural mesothelioma after exposure to asbestos. Thus, the use of kinase inhibitors, such as AZD1775, should slow cancer growth.

Landon Inge, PhD, co-author and assistant professor, said, “We hope these findings spur new explorations for targeting this molecular subgroup, leading to better clinical trial design in the near future.”

The researchers plan to continue this research to identify patients “who will most likely benefit from the use of this type of therapy, and to inform future clinical trial design by selecting lung cancer patients with difficult to treat molecular alterations.”

Care for mesothelioma, a rare form of cancer caused by exposure to asbestos fiber, often follows the same protocol as lung cancer. Positive results in this study can mean positive results for mesothelioma patients. Approximately 3,000 Americans are diagnosed with mesothelioma each year. Currently, there is no known cure for the cancer.

Read the results of the study in the August 15 issue of Cancer Research.

 

Sources

  • Cancer Research
    http://cancerres.aacrjournals.org/content/early/2012/04/25/0008-5472.CAN-11-3481.abstract?sid=c98a9479-15e8-43da-8088-356c133a2536
  • Mayo Clinic
    http://newsnetwork.mayoclinic.org/discussion/mayo-researchers-identify-mechanism-of-oncogene-action-in-lung-cancer
  • Norton Thoracic Institute
    https://www.dignityhealth.org/arizona/locations/stjosephs/about-us/press-center/press-releases/2017-08-18-researchers-discover-a-novel-therapeutic-strategy
Mesothelioma Caregiver

Caring for A Mesothelioma Caregiver

One of the most difficult things in life is to see someone you love suffer. Patients who are diagnosed with malignant mesothelioma, or any cancer or life threatening illness, have a range of emotional ups and downs on their journey. The family member, spouse, partner or friend, that supports them also deals with an enormous emotional burden.

According to a statistic from AARP, approximately 44 million Americans provide 37 billion hours of care for their loved ones, whether it be sick, older or disabled people. The economic value of the services that family caregivers provide is estimated at approximately $350 billion annually.

This past week, a mesothelioma caregiver was sharing her story with me. She had notebooks full of the course of her husband’s mesothelioma journey. From his diagnosis to present day she had chronicled all the events, tests, procedures and surgeries that he had been through. She was encouraging other family members to keep records as she often has to advocate for her husband. She is able to do so by referring to her notebooks to remember dates and times and the corresponding discussions. It was the wife trying to get control of an uncontrollable situation.

As the conversation progressed, we started talking about how she was handling being a caregiver. It has been difficult to watch as her husband has lost weight, been uncomfortable, depressed, and anxious. It has affected her physical and mental health. As important as her job as her husband’s caregiver is, she needed to start to pay attention to her own health.

There have been studies about caregivers’ health. Caregivers have increased physical ailments as compared to non-caregivers. Caregivers also have higher levels of stress, depression, emotional problems, and cognitive problems. Another study found that strained caregivers had a 63 percent greater chance of death within four years as compared to non-caregivers.

Caregiving has many positive aspects. It can strengthen the bond between the patient and the caregiver. Many caregivers feel it is one of the most rewarding experiences that they have in their lives.

What can you do for a caregiver? The gift of time, stay with the patient for a few hours. Encourage the caregiver to go out, take a walk, see a movie, anything that they enjoy. Give the caregiver support by listening to their journey, experiences, and fears. Caregiving is a difficult, rewarding job- made easier with support!

Free Mesothelioma Patient & Treatment Guide

Free Mesothelioma Patient & Treatment Guide

We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.

It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.

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