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Posts by: Eleanor B. Ericson, RN

What Does the Super Bowl Have to do With Mesothelioma?

Eleanor Ericson Mesothelioma NurseOn Sunday February 3, 2019, an estimated 100 million people will watch the Super Bowl.  Some are fans, some are watching for the commercials or half-time show, and others are just watching to be sociable at a party or gathering. The Super Bowl is a game between one team from the American Football Conference and one team from the National Football Conference that have won the honor through a playoff system to go to the Super Bowl. Fans and players alike have superstitions they think can influence the game results. For the teams involved, it is an accomplishment just to have the opportunity to make it to the game.

Football is a team sport. At first glance, it may just seem like one team tackling the other team. It is, however, an intricate game with strategies and assignments for everyone under every possible variable. It has plays, schemes and strategies. It is practiced, studied, analyzed and dissected. It has been called a game of inches. Anyone that has played can also tell you it is hard physically and mentally.

What does the Super Bowl have to do with malignant mesothelioma?

Treating your mesothelioma may be looked at as a team sport, with your teammates fighting for you. Fighting any disease is best done with a team at your side. Mesothelioma Centers support you and your caregivers with experienced teams that include doctors, nurses and social workers. Your doctor is your Head Coach and will guide you through this journey. You may think of your friends and family as your teammates and fans. Just like football teams, your team is unique and special, making plays based on your needs.

Remember, your team is there for you and will help as you need it. You are not alone. Your team will make adjustments for you and switch plays when needed. Your team will learn along the way and get better and better at fighting for you.

P.S.  GO PATS!!!!

2019 Resolutions

Eleanor Ericson Mesothelioma NurseAs the New Year begins, we often look upon this time to make a positive change in our lives. For patients and families dealing with a diagnosis of malignant mesothelioma and any other life-threatening diagnosis this time of year can be difficult. Often patients and families would be happy to make New Year’s resolutions like the ones they might have done in the past but this year they do not seem important or meaningful.

New Year’s Resolutions are usually made to accomplish something that we have been putting off, or to make a positive change in our lives. According to a poll on YouGov.com, the top three resolutions are to eat healthier, get more exercise, and save money. Unfortunately, up to 80% of people surveyed drop their resolutions by the middle of February.

As we approach the end of January perhaps we should shift our resolutions from the top three to promoting good health for ourselves and our families. When a patient is diagnosed with malignant mesothelioma it impacts the entire family. Navigating through the medical system might be extremely difficult and stressful. Our resolutions could include taking care of ourselves and staying positive.

According to Family Caregiver Alliance National Center a caregiving web site, Caregiver.org, the mental and emotional effects on the caregiver have been measured and the statistics are impressive: 40-70% of family caregivers have clinically significant symptoms of depression. 17% of caregivers feel their health in general has gotten worse as a result of their caregiving responsibilities. The toll chronic stress can take on the human body can include a weaken immune system.

How can you manage stress during this very stressful time? For many this is the most stressful time of their lives. Regardless if you are the patient or the caregiver – take care of yourself. Simple things can make a difference. We all know most of these strategies and they can be started at any point to help you relax. Eat well. A healthy diet will give you more energy and be better able to cope with the ups and downs of this journey. Get enough rest, exercise regularly, take a walk outside, do things you enjoy. Take care of yourself, join a support group or take the time to write down your feelings and experiences in a journal. Do what works for you.

We all have our own strengths and weaknesses, likes and dislikes, styles of communication, not one size fits all. Whatever works for you and your loved ones is the right way for you. Make a resolution to take care of yourself for the entire year!

New Year – 2019

Eleanor Ericson Mesothelioma NurseAs we welcome 2019 and all the promise a new year might bring, we recognize the progress made in mesothelioma research in 2018. Progress often comes through a series of small steps, not headlines announcing an overnight cure. Each step brings us closer to a cure.
As we make our wishes for 2019, we pray for research that will cure mesothelioma. We hope you all know we are here to help guide you and we pray along with you for a cure. Researchers, Mesothelioma Programs, Mesothelioma centers, doctors and nurses are all working together towards the common goal of a cure.

As we look forward, we know that working together is so important. In January of 2018, an article was published in the Journal of Clinical Oncology. “Treatment of Malignant Pleural Mesothelioma: American Society of Clinical Oncology Clinical Practice Guideline” was written by a group of distinguished leaders in the mesothelioma community and demonstrates how working together will help us move forward. The article provides “evidence-based recommendations to practicing physicians and others on the management of pleural mesothelioma.”

We wish you all peace, love and health in 2019.

Our Caring Community

Eleanor Ericson Mesothelioma NurseWhen you or a loved one receives a diagnosis of malignant mesothelioma, you become part of our caring and very special community. We understand the struggles you face and are here to help. We know you do not want to be a part of this community. It is, however, a community through which you can connect, share stories and experiences, and feel strength and support behind you through the challenging times.

Many new members of our community have preconceived notions of what these experiences may entail. Being a member can help one find the answers to make a well-informed decision regarding their treatment and the goals of their care.

Treatment of malignant mesothelioma requires a team led by dedicated physicians and experts in the mesothelioma field. In our community, there is no substitution for experience.

Whether you are a patient, a nurse working in a treatment group, a researcher or physician treating the disease or a family member, what unifies the mesothelioma community is the common purpose to help each other. Our community is a safe place to support each other and remind ourselves we are not alone in this battle.

Belonging and connecting is how a community becomes stronger. Humor can also help to strengthen a community, regardless of its intent or purpose. There is a movement called the “pink socks tribe” started by Nick Adkins, a former health care executive. Adkins gives away pink socks with mustaches to facilitate connections with each other. When he gives away a pair of pink socks, he connects with the person, looks them in the eye and shares the moment. With his pairs of pink socks, Adkins is connecting and making someone smile, opening a connection, helping the person to enjoy some silliness and inviting them to tell their story.

The mesothelioma community is an active group that will continue to work together to strengthen our connections with each other and win the battle against mesothelioma. For any new members reading, welcome, and continue to reach out and share to strengthen the bonds.

Loneliness

Eleanor Ericson Mesothelioma NurseRecently, on a home visit to a patient I asked, “How have you been since the last time I was here?” He said he was fine, but I thought he looked sadder than when I saw him last. After a brief cry, we started talking about how he really felt.

My patient had been affected by a public health issue: exposure to asbestos leading to a diagnosis of malignant mesothelioma. He also was affected by another public health issue becoming an epidemic – loneliness and social isolation. Because loneliness is such a problem for mesothelioma patients, I encourage caregivers and medical providers to take time to listen to the patient, really listen to what they are saying and what they are not saying. This can have a profound effect on their physical and mental health. To be our healthiest, physically and mentally, we need to relate to each other. The strength of the bonds that we have with other people can help us feel connected, and part of something.

Loneliness is an epidemic that affects people throughout the world. Not only does it affect your mental health, it has a direct effect on physical health. The physiological way that loneliness affects health is that it can trigger some of the same hormones that your body makes when it is under stress. Long term stress is detrimental to health.

Doctors in England have recently recognized loneliness as a public health epidemic. This past summer, Prime Minister Theresa May appointed a national Minister of Loneliness. Indeed, by 2023, doctors in England will write prescriptions for cooking classes and walking groups as part of a government initiative to combat loneliness. This is a new program called “Social Prescribing.” The plan is for doctors to recommend group activities, such as cooking classes, walking groups and art clubs, instead of medication. In fact, the British government reports that about 200,000 older people across the country haven’t had a conversation with a friend or relative in more than a month.

It is not just the elderly who are suffering from loneliness. In 2018, Cigna, a health care insurer, conducted a study indicating half of all Americans reported they feel alone, isolated, or left out at least some of the time. In fact, American Millennial and Generation Z adults – about 75 million people total – are lonelier than any other U.S. demographic and report being in worse health than older generations. Being connected on the internet is not the same as human interactions and relationships.

The physical toll that loneliness takes on mortality is suggested to be the same as smoking 15 cigarettes a day, making it more dangerous than obesity. People who are lonely and isolated are more at risk for heart disease, stroke, immune system illnesses, and often have a harder time recovering from cancer. Loneliness has also been found to contribute to premature death for people of all ages.

In the age of social media, how can we combat this potential epidemic? We can all make a conscious effort to connect with people. Try to connect with people in your community, church, and neighborhood. Do not assume that everything is okay, or that you would be intruding on someone’s privacy. People who find themselves feeling isolated and alone can benefit from support groups, adult classes, volunteering – any activity fostering connections with people will help.

Listen to your neighbors, family, and friends. Reach out and connect.

Individuality

Eleanor Ericson Mesothelioma NurseWe have learned something from every patient or family member that we have met over the years. The lessons have been as diverse as the patients and family members themselves. Some have been cultural lessons; a great deal has been about human nature. how relationships are affected by being diagnosed, and how we can help and support them has been an ongoing focus of ours. Relationships and how a cancer diagnosis affect the reactions of family members, can be a source of both comfort and stress during their journey with mesothelioma.

Sometimes when faced with big, uncomfortable, situations we become overwhelmed. These feelings can lead to inaction, denial, or thoughts of overwhelming despair. The Cambridge English Dictionary has a definition of overwhelming that fits for patients diagnosed with malignant mesothelioma. It is, ”1. difficult to fight against 2. very large or very great 3. very great or very strong.”

Being diagnosed with a rare cancer can be overwhelming. The person who is diagnosed is dealing with his or her own emotions. Often, as we have witnessed they are the one in a relationship that usually leads the couple or family. The family, or the other person in the relationship looks to them for direction. As every relationship is unique what we observe to be a couple supporting each other or not supporting each other can be the way the relationship works. Not all relationships are “healthy” or supportive. A diagnosis of cancer can be a stress that is added to an already stressful situation.

At a recent meeting with newly diagnosed mesothelioma patients, one of the patients and his wife were in attendance. As the meeting progressed the wife had to leave the room. The information, what they had already been through to come to a mesothelioma center was too much for her. The patient explained that they lead a simple life and coming to the city had been something that had been difficult for her. Faced with the loss of her life partner she wanted to go home to their life.

When faced with big challenges in life, we all have our own ways of coping. We lean on those around us for affirmation that we are choosing the right path, that what we have decided is what is best for us. Malignant mesothelioma can seem like a mountain to climb, with no guarantee that you will make it to the beginning hill. This journey starts with small steps.

While talking after the meeting with the wife who was overwhelmed at the meeting, once again we realized that the journey with mesothelioma is different for everyone and making the first steps are often the hardest. The difficulty that they had experienced getting to the center, hearing the information, realizing what they were faced with had overwhelmed her. The logistics of treatment, how to return to the center, where to stay, the financial implications were all adding to their stress. Talking and drawing on the experience of the staff made it seem possible. Leaving with a plan had helped.

As our relationships are unique so is everyone’s mesothelioma. The one size fits all approach does not work for treatment of mesothelioma nor does it work when supporting patients and families.

EPA and Asbestos

Eleanor Ericson Mesothelioma NurseFor patients and families that are diagnosed with malignant mesothelioma in addition to dealing with this deadly disease there is the lingering question: why did I get mesothelioma? Could it have been prevented? Was I exposed to asbestos? When was I exposed?

Malignant mesothelioma is a rare fatal cancer. For the great majority of patients that are diagnosed with malignant mesothelioma the cause can be traced to exposure to asbestos. Asbestos historically has been used in hundreds of products that individuals use. Asbestos is a naturally occurring mineral and for centuries it has been used in products for its insulating properties and fire proofing qualities. The resulting products are varied and found in many industries.

The economic impact of asbestos and its properties is huge. The impact of a cancer diagnosis is devastating. The politics of health vs. wealth is something that victims and their families are thrust into when diagnosed with malignant mesothelioma.

The leading supplier for asbestos in the United States has been Brazil. In December of 2017 Brazil banned the mining, use and commercialization of the material. In 2016 the total imported metric tons of asbestos from overseas was 705 metric tons. Of that 705 metric tons, 95% of the imported asbestos came from Brazil. The remaining amount was imported from Russia. With Brazil having banned manufacturing Russia has an opportunity to become the biggest supplier of asbestos to the United States.

The link between exposure to asbestos and the development of mesothelioma was first detected in the late 1940’s. The incubation period is from 20- 50 years. An individual can be exposed to asbestos as a young person and not develop the disease until decades later.

Asbestos is not banned in the United States. Asbestos is still found in brake liners, potting soil, chlorine factories and firefighters clothing. In 1975 the EPA- Environmental Protection Agency – banned asbestos from building materials. In 1989, using the Toxic Substance Control Act, the EPA had a ban on nearly all asbestos products. This ban was appealed by the 5th U.S. Circuit Court of Appeals in 1991. In 2016 the Toxic Substances Control Act was amended and required the EPA to evaluate the risks of all existing chemicals used commercially in the United States. Asbestos is one of the first chemicals to undergo evaluations under the new law.

In the news in the past few months it is noted that the Environmental Protection Agency is looking at a risk evaluation of asbestos to “determine whether a chemical substance presents an unreasonable risk of injury to health and environment, without consideration of costs or other non-risk factors, including an unreasonable risk to a potentially exposed or susceptible sub population identified as relevant to the risk evaluation by the Administrator under the conditions of use.”

There are groups that family members of patients who have been diagnosed with mesothelioma have formed to work toward banning asbestos, including the Asbestos Disease Awareness Organization.

If you have witnessed one person suffer with the devastation that a diagnosis of malignant mesothelioma brings onto a person and their families’ lives, there would be no question that asbestos should be banned totally for the good of the public. Wealth means nothing without health.

Immunotherapy and Mesothelioma

Eleanor Ericson Mesothelioma NurseCancer research progress can be slow.  We are always encouraging patients to enter clinical trials. The facts remain that less than 5% of all patients with cancer enter a clinical trial.  Malignant mesothelioma is a rare disease making research even more important. Progress to a cure will only come if scientists are able to study the patients and the impact of the disease on them. When progress is made we need to celebrate it.

In the June edition of Nature Medicine there is an exciting story of a 52-year-old woman from Florida who had metastatic breast cancer and was told she had only a few months to live. Her breast cancer had metastasized throughout her chest and her liver. She had tumors the size of golf balls and was in pain from the tumors pressing on her spinal column, making any movement painful. She joined a clinical trial at the National Cancer Institute, under the direction of Dr. Stephen Rosenberg. The clinical trial protocol included taking tissue from her tumors and identifying the mutations. She had 62 genetic abnormalities in her tissue from her tumor. Of that only four were potential avenues to attack the tumor. The immune system uses white blood cells to fight off bacteria and foreign substances, but with cancer it is not enough.  A “living drug” is made from the patient’s own cells. Scientists screen the white blood cells and extract the cells that can attack the cancer. They then grow these cells in huge quantities in the lab. Along with drugs that will take the brakes off the immune system, and the patient’s own treated cells are infused back into the patient. This procedure took place two and a half years ago.  Almost immediately she started to feel better. Her scans showed her tumors shrinking and disappearing. Now she has been cancer free since the procedure. She is living her life and feeling well. She is the first known patient cured with metastatic breast cancer. In this clinical trial the response rate is 15%. That translates into 7 patients out of 45 survived. The clinical trial included patients with advanced colon cancer, liver cancer and cervical cancer.

Scientists do not know why this woman from Florida with metastatic breast cancer had such a positive, lifesaving response. To find out more much larger clinical trials need to be conducted.

Immunotherapy is a new exciting world of treatment for many cancers. The ways that immunotherapy works for different cancers are still being discovered. The basis of immunotherapy working is to use the person’s own immune system to work harder or smarter to attack cancer cells, or to give your immune system additional man-made substances such as proteins.

For malignant mesothelioma patients this is a positive, exciting report. Once again, every person’s tumors are different, and scientists are finding the keys to unlocking what will work for certain tumor types. A response rate of 15% is a place to start working on why some patients and some tumors respond and some do not.

Joining a clinical trial not only saved this women’s life, it cured her cancer. No one can promise that anyone else will be cured but she has been!  Investigate clinical trials – you never know!

Staging Updates

Eleanor Ericson Mesothelioma NurseDiagnosing and staging of malignant pleural mesothelioma has always been a challenge. Malignant pleural mesothelioma is a rare disease but often, symptoms can mimic many more common diseases. Frequently, a patient’s symptoms can be present for months before a diagnosis is made.

After diagnosis, treatment can vary from patient to patient. Some patients are eligible for chemotherapy and supportive care while others with an earlier stage of the disease and better physical health might opt for aggressive multimodality regimes, including surgery, chemotherapy, and radiation. Currently at one major academic mesothelioma center, approximately 1/3 of the patients that are seen are candidates for surgery. That leaves the majority of patients with non-surgical options.

How is the decision made? And what does staging of mesothelioma do for patient options? These recommendations are made based on a staging system called TNM. T is for tumor and its size, N stands for nodes, and M for metastasis when lesions are found in other parts of the body. This staging is done to see what the prognosis might be, and for helping to decide what type of treatment the patient with the tumor might be eligible for. This staging is based on the tumor size, location, and what the scientists see under the microscope.

As part of the workup for diagnosing malignant pleural mesothelioma different tests are performed. One of the most common test is the CT scan. The CT can show valuable information particularly in the early diagnosis time to see if the tumor is resectable. The CT scan can show if the disease is limited to one lung, distant metastasis or whether there is involvement of the chest wall or involvement of the abdomen.

Some researchers have taken this information and investigated how the volume of the tumor can predict outcome and treatment. From the CT scans they assess the three- dimensional reconstruction of the tumor. This has helped researchers in the prognosis of overall survival. The second measurement that could potentially help with patient prognosis is the thickness of the disease in the fissures in between the lobes of the lung. Since everyone’ tumor is different this is a difficult staging system to implent due to the variability in the disease and the expertise of the radiologist interpreting it.

One of the researchers that is working on this staging system to help patients on what type of treatment is best for their particular stage of the disease is a Dr. Ritu Gill, a radiologist. Studying CT results of malignant pleural mesothelioma patients can give more precise options to the patients and aid in further research. Measuring malignant pleural mesothelioma is not straight forward because the pattern of MPM is irregular and inconsistent.

While the information from CT scans can be challenging to interpret, clinical trials can test these unique measurements and try to make them even more precise. In practice these findings can be used to monitor patient’s response to ongoing treatment and all over for workups of thoracic malignancy. This work takes the results of the CT one step further.

Although more research is needed, this work will help patients and their mesothelioma team in deciding the best possible treatment for that particular patient’s MPM.

Memorial Day 2018

Eleanor Ericson Mesothelioma NurseThis past weekend the nation stopped to honor all that have died in service to our country. Memorial Day is an American holiday, by Federal law it is celebrated on the last Monday in May. Focusing on the reasons for this holiday and the men and women that it honors, it is important to remember how Memorial Day evolved and the history behind it. Originally it was a tradition started to honor the soldiers killed while fighting in the Civil War. It was called Decoration Day because people would decorate the graves of fallen servicemen as way of remembering and honoring their sacrifice for our country. Memorial Day became an official Federal holiday in 1971. This is a day of remembrance and giving thanks for those who have fought for our freedom. Parades are held and for many it is the unofficial start of summer.

War and the experiences in war can leave unseen scars that claim lives years later. Malignant mesothelioma is diagnosed every year in over 3,000 people each year in the United States. Of that amount approximately 1,000 are Veterans of the military, having served our country. Another way servicemen are affected after their service is over is by untreated mental health issues leading to suicide.

The longest foreign war this country has ever fought is still ongoing. In 2001 the war in Afghanistan started, it is now in its 18th year, with many military experts saying there is no end in sight. Many American soldiers have paid the ultimate price in this war. Many other servicemen have paid the ultimate price after leaving the war, dealing with the effects of war on their mental health.

This past week I attended a conference in which a Veteran gave a talk on his experience post military, in his search for mental health help. He is a service connected disabled Veteran who is advocating for fellow Veterans. He is a Veteran of 14 years of service. During his years in the military he had served 2 tours of duty in Afghanistan and Iraq, had multiple commendations for bravery and service. He is a service connected disabled Veteran with a diagnosis of post-traumatic stress syndrome. His wounds are not evident to look at him but are connected to his service. He has taken his experience with the Veterans Administration and become an advocate for his fellow servicemen. He has dedicated himself to helping other returning veterans so that their path back to health will be smoother than his. As he shared his story he related that in the past few years 15 of his fellow servicemen that he had served with had committed suicide. The suicides were all related to the long-term effects of their service. Some had received help, but most had not. He was advocating for improvements to the Veterans Administration access and availability for the returning service-member.

Some private organizations have recognized the need for ongoing emotional support for the Veteran and their families. One such organization that is dedicated to healing the invisible scars of war in Boston is called Home Base, started by the Boston Red Sox Foundation. Home Base is dedicated to ongoing counseling and support of Veterans and their families, regardless of their discharge status.

As we remember those who have given their lives for our country this Memorial Day 2018, remember the Veterans who are struggling with the invisible demons of their service.

Thank-You for your service.

Talc, Abestos and Finding Answers

Eleanor Ericson Mesothelioma NurseWhen talking with patients diagnosed with malignant mesothelioma, there are a certain percentage of people that never know how they acquired the disease. There is no known asbestos exposure in their past that they can identify. For some it is a mystery that remained a mystery.

Recently we saw a pleural mesothelioma patient who has had a complicated post-op course. She is currently in rehab and looks fabulous! She is recovering and regaining her strength. She has not been able to link any risk factors to mesothelioma. Her job has not been in one of the known occupations that increase the risk of mesothelioma. She has been a long-term user of talc and powders that contain talc. Could this have been her exposure that led to her developing malignant mesothelioma?

Recent attention in the news has now linked the use of talc to the development of mesothelioma and ovarian cancer.

Talc is a naturally occurring mineral, it is known as the softest mineral. One of the reasons for this is that it can absorb moisture and be crushed to a powder that is used in “talcum powder.” Another form of talc is soapstone. Soapstone is used to make sculptures, bowls, countertops and many other objects. These are the two forms that most people think of when they think of talc usage. Talc usage is in many products and used as a filter in many. The most common use of talc in the United States is in the manufacturing of plastics, accounting for around 26% of total talc use. Approximately 17% of talc consumption is used as a filler in ceramic products such as bathroom fixtures. Talc is used in a variety of products including paint, paper, cosmetics, antiperspirants. It is also used in roofing materials to improve the resistance to the weather. It is also used as a carrier for insecticides and fungicides it can be blown through a nozzle and sticks to the leaves and stems of plants.

Talc is also commonly found in baby powder and in cosmetics. Talc is also used in rice and chewing gum and in some tablets. It is used to absorb moisture, prevent caking, or to improve the feel of a product.

Cosmetic products and the ingredients that are in them, do not have to undergo FDA approval before they go on the market. The cosmetic company is responsible for the safety and labeling of their products and for the ingredients in them. Under the Federal Food, Drug and Cosmetic Act the companies are not required to share their safety information with the FDA.

What is talc? Talc is a naturally occurring mineral. The ingredients that make up talc are magnesium, silicon, oxygen and hydrogen. Talc is mined in the United States from an open pit. Most of the talc deposits in the United States are in metamorphic rocks on the eastern side of the Appalachian Mountains or in Washington, Idaho, Montana, California, Nevada, and New Mexico and Texas. China leads the world in production of talc.

Asbestos is also a naturally occurring mineral. Talc and asbestos occur naturally and are often intertwined in the ground. Since asbestos is a known carcinogen, and since asbestos is known to be present in talc deposition, this issue of asbestos and talc has been studied for many decades. However, it is only recently that the issue of asbestos and talc has received media attention through a number of legal cases. There have also been recent legal cases involving talc and ovarian cancer that have given attention to this issue as well.

This connection of the use of talc and the development of mesothelioma can possibly be the answer for some patients who have already been diagnosed with malignant mesothelioma. For those who have had no answer to the development of their disease, the issues that have come out about asbestos in talc could help in answering these lingering questions.

Keytruda

Eleanor Ericson Mesothelioma NurseThis past week encouraging news came out regarding Merck pharmaceutical drug Keytruda and patients with previously untreated advanced non-small cell lung cancer. Keytruda is a drug that harnesses the immune system to attack tumors. It is an immunotherapy drug that works by targeting a protein called PD-1- programmed death receptors. It is thought that the cancer cells do not allow the white cells to attack and kill the cancer cells as they normally would do with other foreign invading toxins. The clinical trial that the news came from was presented by Dr. Leena Gandhi of New York University, Perlmutter Cancer Center and reported at the American Association for Cancer Research meeting in Chicago. The study showed that Keytruda was useful when added to the standard chemotherapy for non-small cell lung cancer, which is the type of lung cancer most commonly found in people that smoke. By adding Keytruda the one-year survival rate increased from 49% to 69% as compared to the group who received the standard chemotherapy only.

Keytruda whose generic name is Pembrolizumab, has been used to treat many different types of cancer. It has been used with some degree of success in patients with melanoma, Hodgkin’s lymphoma, cancer of the stomach, head, neck, and bladder. The total sales for the treatment with Keytruda was a total of 3.8 billion, with an average cost of $150,000 per year, per patient.  Keytruda is administered intravenously. The common side effects are nausea, anemia and fatigue. The standard chemotherapy treatment used in the study and for non-small cell lung cancer is pemextred and carboplatin in the control group with Keytruda in the other group.

The only approved chemotherapy treatment in the United States is pemextred and cisplatin.  Scientists are excited about the possibilities that immunological drugs can offer to patients with a variety of cancers. It is not a one size fit all approach. All the additions and timing of when to administer the chemotherapy with or without the immunological drugs has to be studied through clinical trials that are carefully regulated.

For patients with malignant mesothelioma the number of patients is small. With approximately 2,500 to 3,000 patients a year diagnosed with malignant mesothelioma in the United States per year, the challenge is to encourage enrollment in clinical trials that patients may qualify for. Other immunological drugs are also showing promising results with malignant mesothelioma.

The timing of treatment is critical. Diagnosis with malignant mesothelioma can sometimes take time due to the rarity of the disease, and most symptoms mimic other more common diseases. The importance of knowing what clinical trials that the patient with malignant mesothelioma may be eligible for is how progress to a cure is going to happen.

Currently there are 13 studies listed on www.clinicaltrials.gov that are studying Keytruda/ Pembrolizumab and malignant mesothelioma. Of that 13, 2 are not actively recruiting patients, 10 are recruiting, and one has been withdrawn.

Progress is exciting! Encouraging continued participation in clinical trials is the way forward both scientifically and economically.

Investigate the possibilities, www.clinicaltrials.gov

Mindfulness

Eleanor Ericson Mesothelioma NurseBeing diagnosed with malignant mesothelioma is a life altering event. How does one handle and function when facing the voice in your head that cannot be turned off? A growing number of patients are finding relief in a way of thinking known as mindfulness.

One definition of mindfulness in Psychology Today is: “Mindfulness is a state of active, open attention on the present. When you’re mindful, you carefully observe your thoughts and feelings without judging them good or bad. Instead of letting your life pass you by, mindfulness means living in the moment and awakening to your current experience, rather than dwelling on the past or anticipating the future.”

Mindfulness is a way to “rewire the brain for the better.” This is not a new technique it has roots that go back thousands of years to Buddhism and Hinduism. The modern-day movement is thought to have started in the 1970’s. In 1975 the Insight Meditation Society was started by 3 people. Another leader is Jon Kabat-Zinn is credited with starting the conversation regarding the clinical effects of mindfulness. In the late 1970’s he founded the Center for Mindfulness in Medicine Health Care and Society at the University of Massachusetts Medical School in Worcester Ma. He currently is a Professor of Medicine Emeritus at UMASS. He developed a stress reduction and relaxation program called “Mindfulness- Based Stress Reduction” (MBSR), putting mindfulness in scientific context. His program is 8 weeks long, mindfulness-based stress reduction, and continues to be taught and practiced.

Mindfulness must be practiced. It is not something that clears your mind of all thoughts and concerns, it is not a way to relax. It takes time and practice to incorporate it into your life and get results. It helps both the mind and spirit. Meditation is a part of mindfulness.

There are classes available to learn about mindfulness. Cancer Centers, or Centers for Integrative Health Care, might have one available or be able to tell you were the nearest one is. There are classes available on line, books, apps, all different ways to learn about mindfulness.

One book, Mindfulness- Based Cancer Recovery, by Linda Carlson, includes research that shows mindfulness can lead to a 65% reduction in stress symptoms, has a measurable biological affect, slows the cells aging and maintained the shortening of telomeres. According to Carlson, “the goal is to focus on the events in your life as they are instead of ruminating about what could have been or what might still be.”

In a 2017 pilot study a researcher from the Mayo Clinic, Robert Benzo MD, found that people with lung cancer who practiced mindfulness before and after lung surgery, had fewer complications and better lung function.

A study published by Britta Holzel, a research fellow at Harvard and Giessen University in Germany, demonstrated that through meditation, the brain was able to create new gray matter. Practicing meditation can play an active part in increasing our quality of life, while helping reduce a number of symptoms.

People diagnosed with malignant mesothelioma and their loved ones are under enormous stress. Practicing mindfulness may be a way of letting go what you cannot change and become comfortable in the present moment.

Sleep Week

Eleanor Ericson Mesothelioma NurseWhen dealing with a diagnosis of malignant mesothelioma it is vital to take the best possible care of yourself. One of the ways to do that is to get enough sleep. The amount of sleep that can provide you with optimal physical health, optimum immune function, mental health, and cognition, is what you need to obtain. This is often easier to say and to intellectually know but to achieve can be challenging.

Mesothelioma SleepSleep is a basic need of the body for physical and psychological well-being. The importance of sleep for best health cannot be underestimated. Sleep is something that has been undervalued by many of us. The amount of sleep we need varies with age. According to the National Sleep Foundation, adults age 18-64 should get between 7 and 9 hours of sleep a night. Age 65 years and older 7 to 8 hours are recommended. Infants and younger people require more sleep. Over time not sleeping, called short sleep deprivation, can lead to various health problems, including cardiovascular disease, obesity, and all-cause mortality. The immediate effects of not getting enough sleep are irritability, negativity, bad mood, inability to concentrate, short term memory loss, apathy, poor communication and questionable decision making.

Sleep and its effect on the human body is studied by sleep doctors. These specialized experts are called somnologist- from the word “somnus” meaning sleep. These physicians have additional training in the science of sleep medicine and are board certified by the American College of Sleep Medicine. The American Academy of Sleep Medicine, is dedicated to achieving optimum health through advancing the field of sleep medicine at the state and local levels.

There have been many studies conducted regarding sleep and its effects. In our culture often people admire someone who claims to get only 4 hours of sleep a night. In one study nearly 30% of adults in the United States reported that they sleep 6 or fewer hours a week.

Research has shown that long-term sleep disruptions may raise the risk of diagnosis of certain types of cancer. The findings that lack of sleep increases inflammation and disrupts normal immune function. Involved in the sleep cycle is a hormone called melatonin, which we produce with sleep, this hormone is thought to have antioxidant properties that help prevent cellular damage.

March 11-17 is Sleep Awareness Week. “Begin with Sleep” (#YourDayBeginsWithSleep), the focus of this week is to educate people about the importance of good sleep health for individuals to best achieve their personal, family, and professional goals. The week is sponsored by the National Sleep Foundation. The foundation is dedicated to improving health and well being through sleep education and advocacy.

Being diagnosed with cancer can lead to sleepless nights. In the middle of the night unable to sleep our darkest fears can seem to be reality. It is important when this happens that we realize that what we think at 4 a.m. is often shrouded in lack of sleep, and a negative hopeless frame of mind. It is important for all of us to take care of ourselves and get enough sleep for our physical and emotional well-being.

“The best bridge between despair and hope is getting a good night’s sleep.” – E. Joseph Cossman

Yoga – A Successful Treatment

Eleanor Ericson Mesothelioma NurseOne of the side effects that patients undergoing treatment for cancer often notice is fatigue. Doctors that study fatigue related to cancer treatment have found that the interventions that are prescribed fall into three categories. The first is treatment of a physiological problem like anemia, the second is drugs to stimulate the patient such as amphetamines. The third, and most successful is to suggest an exercise program such as yoga. Research is showing that yoga can help with pain and fatigue for patients undergoing cancer treatments. Used in conjunction with standard medical therapy, yoga is included as the third most popular complementary treatment used in the United States.

Yoga Cancer MesotheliomaYoga is an ancient practice of at least 5000 years, there are more than 100 different forms of yoga varying from fast paced to relaxing. The practice of yoga can help increase strength, endurance, and flexibility. Hatha is the form of yoga that most people think of when they think of yoga. The word Yoga is derived from the Sanskrit word “yuji,” meaning yoke or union. Yoga is an ancient practice that brings together mind and body. One of the premises being that mental and physical health are not just closely tied together they are equivalent. For many yoga is a low risk, high yield approach to improving overall health. Yoga has been described as a total mind -body workout that combines strengthening and stretching poses called asanas, with breathing exercises known as pranayama, and meditation or relaxing.

The past few years have shown an increase in the number of people who practice yoga. It is estimated that approximately 7.5% of U.S. adults have tried yoga at least once- nearly 4% in the previous year. A survey conducted by Yoga Alliance and The Yoga Journal, the results noted in an article in Forbes March 15,2016, stated yoga is being practiced by 37 million people in the United States up from 20 million, 3 years ago. Of that number 72% are women and 28% are men. The coasts of the United States are where yoga is most popular rather than in the middle of the country. One study identified some of the reasons people are trying yoga is 61% for flexibility, 56% stress relief, 49% general fitness, 49% overall health, 44% physical fitness, 86% experience a strong sense of mental clarity and 90% yoga is a form of meditation.

What are some of the effects of yoga on your health?

– Yoga can reduce the impact of exaggerated stress responses and may be helpful with both anxiety and depression.

– University of Utah study showed that people that have a poorly regulated response to stress are also more sensitive to pain.

– Techniques such as yoga, can help a person regulate their stress and pain responses.

– Can decrease the levels of cortisol, the primary stress hormone- helps lower levels of stress, anxiety, fatigue and depression

– Studies have shown that practicing yoga can lead to a decrease in symptoms of anxiety

– May reduce inflammatory markers in the body and help prevent pro-inflammatory diseases

– Could improve heart health- alone or with other therapies

– Improves quality of life

– Fights depression by decreasing symptoms of depression by influencing the production of stress hormones

– Reduce chronic pain increasers the secretion of melatonin a hormone that regulates sleep and wakefulness

– Improves balance and mobility in older adults

– Yoga may stimulate the vagus nerve and reduce migraine intensity and frequency- alone or with conventional therapy

– Mindful eating- yoga encourages mindfulness which may be used to help promote mindful eating and healthy eating habits

Yoga has many health benefits, is affordable, and open to people of all ages. It may help in your journey with mesothelioma.

Post-traumatic Stress Syndrome, PTSD

Eleanor Ericson Mesothelioma NursePost-traumatic stress syndrome, PTSD, is something that a lot of people associate with seeing or being involved in a traumatic event such as service in the military, it can also extend to being diagnosed with cancer. PTSD can develop at any age, and not everyone diagnosed with PTSD has been through a traumatic event. A friend or family member may experience a trauma, or a sudden unexpected death can lead a loved one to experience PTSD.

The United States National Library of Medicine defines post-traumatic stress syndrome as, “an anxiety disorder that develops in reaction to physical injury or severe mental or emotional distress, such as military combat, violent assault, natural disaster, or other life-threatening events.”

Often when a person is diagnosed with malignant mesothelioma it is after eliminating other more common diseases. This time can be an emotional roller coaster. For many it is mentally going from their usual excellent health to maybe a common condition like pneumonia, or an infection, to a diagnosis of a rare deadly cancer. The symptoms might have started as annoying, through the work up and elimination of other diseases it becomes a process that indicates a life altering diagnosis.

A recent article in the journal Cancer in November 2017, found that approximately one in five cancer patients reported symptoms of post-traumatic stress disorder within six months of diagnosis. After four years, about 6% of patients had PTSD.

In general PTSD affects approximately 3.5% or about 8 million, of the people in the United States. Not everyone that has experienced a traumatic event develops PTSD. Consisting of ongoing- chronic -or short term -acute- PTSD the symptoms can develop within one month of the traumatic event or years after. PTSD affects more women than men. Generally, the symptoms are divided into four different groups: intrusive memories, avoidance, negative changes in thinking and mood, changes in physical and emotional reactions. The diagnosis is made for adults they must have these symptoms for at least one month, at least one re-experiencing symptom. These symptoms can cause issues in everyday life. They can include flashbacks- reliving the traumatic event over and over and experiencing it physically. Avoidance symptoms which include staying away from places, events, or objects, that remind the person of the traumatic event and avoiding thoughts or feelings related to the traumatic event. The 3rd symptom includes arousal and reactivity symptoms that include being easily startled, feeling tense, difficulty sleeping, angry outbursts. These symptoms are constant, leaving the person angry and stresses and with difficulty doing activities of daily living. The fourth category of symptoms are cognition and mood symptoms which include trouble remembering key features of the traumatic event, negative thoughts, distorted feelings of guilt or blame and loss of interest in enjoyable activities. When symptoms last more than a month, interfere with your ability to function and cannot be attributed to other mental health issues, substance abuse, medical issues it might be PTSD.

Treatment for PTSD includes medications, commonly an anti-depressant and psychotherapy – talking with a competent mental health professional who is knowledgeable in PTSD. Talk therapy with a competent professional can last 6- 12 weeks but for many people it can last a lot longer. With help the symptoms can improve gradually. Support of friends and relatives is also important, letting them into what triggers your symptoms also can help.

Post – traumatic stress disorder is a very serious condition, it can upset your relationships, livelihood, and your health. It is vital that the symptoms be recognized and to seek help. PTSD can be treated and managed but not cured. Reach out get help, improve your life and the lives of those who love you!

Financial Toxicity

Eleanor Ericson Mesothelioma NurseA diagnosis of cancer can affect every aspect of a person’s life. We know that receiving a diagnosis of a rare, life threatening cancer such as malignant mesothelioma, can cause stress for both the patient and the patient’s family. Stress can be caused by many factors, physical, emotional and social. One of the goals of the patient, family and medical team when deciding on treatment is the effect on the person’s quality of life. Is the treatment going to maintain their quality of life? The stress can be significantly increased when the patient and the patient’s family also is worried about money. There are costs associated with treatment that are covered and not covered by private insurance or Medicare. These out of pocket expenses, co-pays for medications, co-pays for doctors’ visits, parking, eating at the facility, hotel rooms, are some of the examples that patients and families have to pay for when being treated for cancer. For some the effect on their personal finances can affect their choice of treatment options and their quality of life.

The cost to a patient’s health, due to the stress of financial problems created during cancer treatments is not something that is being ignored by the health care team. The impact of finances on a patient’s cancer journey is now being studied by many health care researchers. A few facts are listed below:

– The term “financial toxicity” refers to insured out of pocket expenses related to treatment- costs. It has been found that these expenses can diminish quality of life and impede delivery of the highest quality of care. Research has identified both objective financial burden and subjective financial distress as key components of financial toxicity

– The cost of cancer care in the United States for the year 2015 was 107 billion dollars.

– Keytruda – Pembrolizumab is $14,500 per month

– In 2014 cancer patients paid nearly 4 billion out of pocket for cancer treatments- total spending on cancer-related health care 87.8 billion in 2014

– In 2015 Americans spent 284 billion on prescriptions -about 9%- 32.6 billion spent on oncology drugs- another 11.1 billion spent on supportive care treatments which help with the side effects of strong chemotherapy drugs

– Newly approved cancer drugs cost an average of 10,000 dollars per month with some therapies topping 30,000 dollars per month- patients typically pay 20 to 30% out of pocket for drugs-average years supply would cost 24,000 thousand-to 36,000 thousand in addition to health insurance premiums

– Patients report lower quality of life who have financial toxicity- studies show that patients with cancer who file for bankruptcy may be more likely to die than those who do not file

– Financial difficulties that stem from dealing with cancer have an effect on people avoiding or delaying treatments, care or drugs- can lead to stress that can lead to mental and physical health problems

– 2013 study in the Oncologist found nearly half of cancer patients with insurance cut back on their spending on food and clothing or dipped into savings to pay for treatment

– Patients that have financial difficulty also have increased mental health issues

– A report commissioned by the American Society of Clinical Oncology found 27% of cancer survivors or close relatives of a cancer patient said they skipped doctor visits or had taken other steps to reduce health costs

Some of the ways that the medical system is attempting to help patients deal with this reality is trying to identify patients and screen cancer patients for financial stress. There are navigators in most hospitals that specialize in health insurance plans, and are knowledgeable about resources available. Social workers that know the community resources available are included in the health care team. General awareness has also increased to the importance of knowing the patient and his financial concerns.

Mesothelioma patients who have financial issues need to reach out for the resources that are available to them. It is vital that they use their energy to deal with their serious health challenge, and not be drained by financial concerns.

 

 

Sources:
  • U.S. News and World Report-by LacieGlover www.usnews.com/topics- July 1,2015
  • www.nerdwallet.com/blog/health/2015/06/23/behind-health-insurance- premiums-continue-pay-claims
  • www.ncbi.nlm.nih.gov/pmc/articles Financial Toxicity, Part I: A New Name for a Growing Problem S.Yousuf Zafar, MD. MHS and Amy Abenathy MD- financial toxicity the patient level impact on the cost of cancer care
  • National Cancer Institute- Financial Toxicity (Financial Distress) and Cancer Treatment www.cancer.gov/about-cancer/managing-care/track-care-costs/financial-toxicity
  • Web MD- www.webmd.com/cancer/news/20171024/many-cancer-patients-skip-treatments-due-to-cost
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