Update on Clinical Trials: Summer 2019

Posted on August 4, 2019
Author: Eleanor B. Ericson, RN
Category: Mesothelioma Nurses

Clinical Trials are where new drugs or treatments are evaluated, which is ultimately how progress is made in treating diseases. Theories are tested, and through the rigorous scientific process, evaluated. The findings must stand up to peer reviews and be duplicatable. Clinical Trials are done in stages and require rigorous adherence to the approved protocols.

Rare diseases, such as mesothelioma, have more difficulty getting the attention and interest of the scientific community than diseases that affect more people. A rare disease, by the definition of United States health organizations, is any disease affecting fewer than 200,000 people in the United States at any given time. Malignant mesothelioma, a disease with which only 2,500 to 3,000 people are diagnosed with annually, consequentially classifies as a rare disease. For reference, there are over 228,000 people diagnosed with lung cancer each year.

Rare diseases have some common characteristics. The symptoms are often similar to more common diseases. For example, with malignant mesothelioma, many relatively common symptoms can delay a correct diagnosis, leading to misdiagnosis and delayed treatment. Rare diseases also have issues with access to the best care and treatment, since there is such a small population of people with the disease and many medical centers are not equipped with expert researchers in that field.

In the summer of 2019, there are currently 88 clinical trials recruiting worldwide on www.clinicaltrials.gov for malignant mesothelioma. Of those, 57 are recruiting in the United States. Because of the small population of people with malignant mesothelioma, the trials are often offered at multiple locations in order to gain the largest share of trial participants. Texas has 23, followed by 20 in Maryland, 19 in California, 13 in Florida and New York, and 11 in Massachusetts

The clinical trials that are recruiting are varied in the approaches they are taking. Some of the therapies being studied include supplementing current therapies with immunotherapies. New drugs such as Olaparib (generic name: Lyporza) and other drugs known as PARP-inhibitors are also being studied for their treatment potential in mesothelioma. Other studies are collecting specimens and banking the tissue for study; there is a study trying to document the natural progression of the disease by collecting specimens from the same patient at various times; and, there are studies that are trying to improve the staging of the disease in order to pinpoint the best treatment for the various stages of malignant mesothelioma.

There are a number of opportunities for involvement in a clinical trial for people with mesothelioma. All clinical trials are voluntary and require your informed consent, which can be withdrawn at any point that you want. Consider joining, and ask your mesothelioma team if they know of any opportunities that would be right for you.

Experience With Humility

Posted on June 5, 2019
Author: Eleanor B. Ericson, RN
Category: Mesothelioma Nurses

We always encourage people to go to a Mesothelioma Center of Excellence for a personalized treatment evaluation. Malignant mesothelioma is such a rare disease and is difficult to diagnose. Therefore it is best to get your options from an expert. Since treatment options are dependent on the cell type, stage, and functional status of the patient with the disease, it is important to go to a center that has an experienced team of experts. The mesothelioma expert is a leader in the treatment of the disease, but you are expert on your life.

How do you find a center that will be the best “fit” for the person with the diagnosis and their family? You are looking for a center that has an expert with experience, and a dedicated team to support you through the journey. There are also intangibles that you need to consider. One of them is your ability to relate with some members of the team at the mesothelioma center.

What are some of the qualities that you are looking for when you look for a doctor to lead your team in the fight against this serious cancer? There are some characteristics that you will not be able to find when you google your expert. One of the most important qualities is the ability to really listen to the person diagnosed with malignant mesothelioma and their families.

What makes these centers different is the experience of the staff. There is no substitute for experience. With experience comes confidence, which must be balanced with curiosity and openness. When a person is an expert in something it is vital they remain willing to listen to others. The experts must possess intellectual humility. Intellectual humility is defined as the ability to recognize what you think and believe could be wrong. The expert should be comfortable with new ideas, options and foster a culture that encourages new ideas to be brought forth.

Some of the leading doctors in the field of mesothelioma research, when talking with a patient and their family, will sometimes surprise the family by saying, “I don’t know.” Through years of supporting people with mesothelioma and their families, we have recognized the importance of telling people upfront that there is still so much to learn.

Seeking out an opinion at a Mesothelioma Center of Excellence can be a life-altering decision. Asking for help can be difficult for some of us – make sure you are comfortable with your ability to communicate with your expert or one of the members of their team.

“There is nothing noble in being superior to your fellow man, true nobility is being superior to your former self.” Ernest Hemingway

Asking For Help

Posted on June 5, 2019
Author: Eleanor B. Ericson, RN
Category: Mesothelioma Nurses

Being diagnosed with malignant mesothelioma can change your outlook on many things. This week, a person with mesothelioma returned to our clinic with a friend. His journey with mesothelioma has been going on for about 2 years. He has a loving wife and family and had always been a man in control. The new role of being a patient was very difficult for him. The family had said he was very social and had a lot of friends who wanted to support him. During the initial diagnosis and treatment, he had shut them out, relying on his wife and children. This is not unusual as he was still adjusting to his disease. As his mesothelioma became a chronic illness and his family had resumed their activities, he still had a hard time letting his friends back in. This appointment was different: he had asked a friend to bring him. This might seem like a small detail, but it wasn’t.

As different treatments, earlier diagnoses, and specialized care have evolved, some journeys with mesothelioma are progressing to living with mesothelioma as a chronic disease. Living with a chronic disease can be very challenging. Being diagnosed and living with mesothelioma has been described as a “team sport.” For some people there are aspects of this “team sport” that are difficult to deal with – one of them being asking for help.

Sometimes we just need help. For many of us asking for help is difficult. Many people think of asking for help as a sign of weakness. They do not want to be seen as needy. This is easy to understand because people often take pride in being independent.

There are many books devoted to helping and improving yourself. Self-help book topics include how to start a business, selling, branding yourself and just about any topic that you can think of. For your health there are books on living and eating healthy, growing older, taking care of children – again, any topic that you can think of. Society encourages us all to help improve ourselves. Through training, diet, education and exercise you can help you be a better person.

Self-reliance and independence are encouraged from the time you are a toddler. Doing it yourself is celebrated and acknowledged as an accomplishment. People are praised as competent, strong, independent – all attributes for which we are proud.

Some people are dread asking for help. They delay it hoping things will get better. They look at asking for help as a deficiency. They fear losing control. They fear they will not be able to repay the favor.

How can you help a person feel more comfortable asking for help when they need it? The best approach is to ask early. Don’t wait until a crisis to reach out. If possible, ask in person and in private. Be straightforward with your request. Thank the person whether they help you or not.

Most people are happy to help someone else. They feel better about themselves. Everyone has their own unique gifts, insights and experiences and if asked are happy to share them with others. Asking for help is not a sign of weakness. Remember that the people who love you will want to help.

Friendship

Posted on June 1, 2019
Author: Eleanor B. Ericson, RN
Category: Mesothelioma Nurses

“The greatest healing therapy is friendship and love.” Hubert H. Humphrey

Friends are vital to the human experience. Friends come at many different times in our lives – some are with us for a short time, others are lifelong relationships, and all sustain us through the good and bad times.

The Greek philosopher Aristotle in 384 B.C. classified friendships into three different types: Friendships of utility, friendships of pleasure, and friendships of the good. A friendship of utility is based on the benefits that each side can offer the other. Business partners, classmates from school, and work colleagues are some examples. A friendship of pleasure includes common interests, such as when people who enjoy sporting events go to games together. Finally, a friendship of the good is a friendship based upon respect and appreciation of the other person’s strengths and weaknesses. Friendships of utility and pleasure can come and go in your lifetime. You may move, or not be interested in a hobby that had originally brought you together. The other person may lose interest in what your common bond was, and these friendships tend to fade away. Friendships of the good, however, are hard to find and sustain. If you have one or two good friends in a lifetime, you are blessed.

We all find friends in different places. From our first friends who may be our sisters or brothers or cousins, to friends from school, work, church, or different organizations that we belong to. When we are young it is easier to make friends. At school, camp or playing sports you find people that you have things in common with and friendships are born.

As adults, making friends can be more challenging. You might have your friends from work, but people change jobs much more frequently these days. More people than ever are working from home and moving to a new city can be challenging to find new friends as adults. Often the advice to join a group, volunteer, or take a class is offered in order to help adults meet new people and form friendships.

Being diagnosed with malignant mesothelioma is a life altering diagnosis that can put you in contact with people who you never would have met otherwise. Over the years we have been witness to some friendships of the good develop. One was a friendship that spanned eight years with two people that lived in different parts of the country, had a difference in age of 15 years, one was a man and one was a woman. What started as a friendship of convenience ended up being one of the most meaningful relationships in both of their lives.

When a person is diagnosed with malignant mesothelioma, one of the last things on their mind is forming a new friendship. True friendships, however, can sustain us when times are rough.

“In everyone’s life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit.” Albert Schweitzer

Memorial Day 2019

Posted on May 27, 2019
Author: Eleanor B. Ericson, RN
Category: Mesothelioma Nurses

On Memorial Day, we pause to remember those who have died in military service while serving our country, the United States of America. Memorial Day is a Federal holiday that is observed on the last Monday of May. Schools, banks, the stock market are all closed, in addition to no mail being delivered. Memorial Day also signals the beginning of summer. This holiday is often associated with picnics, trips to the beach, and family gatherings. It can be easy to forget why we pause to remember those who have given the ultimate sacrifice for our country.

The history of Memorial Day is that it was originally called Decoration Day. After the Civil War, the War that had the most American deaths, approximately 498,332, the tradition was started to place flowers on the graves of both the soldiers from the Union and Confederate armies. The Civil War had the most deaths attributed to it on the battlefield. Our most recent conflicts and wars have had other sources killing our soldiers in addition to bullets. During World War II there were over 291,000 killed in both theaters of Europe and Southeast Asia. Many others were exposed to asbestos on the ships or in their barracks. In the Korean War soldiers were subject to extreme cold injuries and exposure to radiation and iodizing radiation in addition to asbestos and PCB’s. In the Vietnam Era approximately 3 million soldiers were exposed to Agent Orange when they served our country. The casualty number for Vietnam is approximately 58,000. Several million soldiers were exposed in the Middle East during the Persian Gulf War, Iraq War. They were exposed to war-specific environmental hazards during their tours of duty. Ammunition stores which contain sarin gas, and burn pits, that also contained uranium ammunition burned constantly exposing many to long term toxic effects of these noxious chemicals. The longest war in the history of the United States, the War in Afghanistan, has had long term health effects on soldier’s health. Many veterans suffer from PTSD, alcohol abuse, depression or mental health issues that have lasting debilitating effects. Physical conditions that are related to exposure to chemicals are all being studied, particularly in the ongoing war in Afghanistan.

Each year in the United States approximately 2,500- 3,000 people are diagnosed with malignant mesothelioma. Of that number, 1/3 are thought to be caused by asbestos exposure which occurred while serving our country. For some veterans’ asbestos exposure, Agent Orange, burn pits, these silent killers related to service to our country do not appear until years later.

This Memorial Day 2019 remember to pause and remember those who have given the ultimate service to our country, some on the battle field, some years later dying from the effects of exposure to fatal carcinogens in the service of our country.

Thank you for your service. You will not be forgotten.

Gathering Information

Posted on March 29, 2019
Author: Eleanor B. Ericson, RN
Category: Mesothelioma Nurses

At a recent meeting with patients diagnosed with malignant mesothelioma, as usual, we exchanged a lot of information. Some patients shared their experiences about surgery; other patients shared their thoughts and feelings about scans, chemotherapy and radiation therapy. We shared thoughts about why sometimes surgery is recommended over chemotherapy or vice versa. Everyone discussed their concerns and questions about the treatments.

Information comes at us from multiple sources. We can get information instantly these days from the internet. It is estimated that approximately 1/3 of Americans look online for medical information – like this blog. Reading about mesothelioma online can be very scary and concerning. Knowing the source of your information and the context of the statistics and information is very important. While we share this information with you, it is extremely important to speak with your medical providers about your health.

For patients diagnosed with malignant mesothelioma, treatment needs to happen at the right time, at the right stage of the disease and the person must be physically able and mentally willing to undergo treatment. This information can only be evaluated with a medical expert in mesothelioma. Treatment for malignant mesothelioma is decided on a case by case basis.

Reading the latest statistics can be interesting, but do they apply to you? It is estimated that at least one-third of people living in the United States use symptom checkers for routine and urgent medical conditions. Since many of the initial symptoms of malignant mesothelioma are the same as more common conditions, you could be worrying yourself unnecessarily. While you may be experiencing symptoms that concern you, it is best to discuss these with your doctor, as these online tools are not appropriate to diagnose a medical condition.

Search engines can be very helpful in obtaining information, but they should only be a part of making your decision regarding your health care. Please remember to discuss the information you find on the internet with your healthcare professionals.

Sleep Help

Posted on March 29, 2019
Author: Eleanor B. Ericson, RN
Category: Mesothelioma Nurses

Our recent blog on sleep deprivation and sleep deficiency explained what the terms mean and how important sleep is to good health. When you or your loved one is managing with a diagnosis like mesothelioma, it is not unusual to suffer from lack of sleep. Now that you have identified this problem, how can you help solve it?

Sleep hygiene is a defined as “a variety of different practices and habits that are necessary to have good nighttime sleep quality and full daytime alertness” (www.sleepfoundation.org).

Sleep should be a priority for everybody, but especially so for people being treated for mesothelioma. Getting a restful night of sleep can be challenging. It is estimated that up to 59% of all cancer patients suffer from insomnia. Some of the possible causes of sleep deficiencies with a cancer diagnosis can be stress, pain, side effects from the cancer treatments, new medications that are interfering with sleep, or possibly the cancer itself.

How do you improve your sleep hygiene during the stress of managing a mesothelioma diagnosis? Let’s begin with how your routine affects the quality of your sleep. Once you determine how much sleep you function best with, make it your goal to get that amount. The average adult requires 7 to 9 hours a night for their best performance. One way to achieve this is to limit daytime naps to no more than 30 minutes. Also helpful is exercising during the day – it can be as simple as walking and getting outside for at least 20 minutes. Try not to drink caffeine or eat rich or spicy foods close to bedtime. Too much alcohol can also interfere with sleep – although you might get to sleep faster, staying asleep can be an issue. Make sure that your bedroom is comfortable – a cooler temperature is better for restful sleep. Finally, try and make the time you go to bed each night routine, so your body understands when it is time to fall asleep. Above all, make sure you are always reaching out to your loved ones and your caretakers throughout this ordeal, and relieve some of the burdens and worries that are inhibiting your sleep.

It is important to keep your mesothelioma team in the loop of how you are sleeping. Sleep is as important as exercise, medication, and nutrition when dealing with any cancer diagnosis, and your nurses and doctors need to be aware of anything that might be impacting your fight. Your mesothelioma team can even guide you to sleeping resources as well – the counselors on site at a mesothelioma center can benefit patients by helping them practice healthy sleeping techniques. There are ways and resources to help you get restful sleep. It begins with recognizing how important a role sleep plays in your health.

Get a good night of restful sleep, or make changes and talk to someone to help you achieve this goal. It is a priority!

What Does the Super Bowl Have to do With Mesothelioma?

Posted on January 28, 2019
Author: Eleanor B. Ericson, RN
Category: Mesothelioma Nurses

On 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

Posted on January 28, 2019
Author: Eleanor B. Ericson, RN
Category: Mesothelioma Nurses

As 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

Posted on January 5, 2019
Author: Eleanor B. Ericson, RN
Category: Mesothelioma Nurses

As 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

Posted on December 18, 2018
Author: Eleanor B. Ericson, RN
Category: Mesothelioma Nurses

When 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

Posted on October 25, 2018
Author: Eleanor B. Ericson, RN
Category: Mesothelioma

Recently, 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

Posted on October 16, 2018
Author: Eleanor B. Ericson, RN
Category: Mesothelioma

We 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

Posted on August 30, 2018
Author: Eleanor B. Ericson, RN
Category: Asbestos

For 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

Posted on July 18, 2018
Author: Eleanor B. Ericson, RN
Category: Mesothelioma

Cancer 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

Posted on June 25, 2018
Author: Eleanor B. Ericson, RN
Category: Mesothelioma

Diagnosing 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

Posted on May 30, 2018
Author: Eleanor B. Ericson, RN
Category: Veterans

This 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

Posted on May 25, 2018
Author: Eleanor B. Ericson, RN
Category: Talc

When 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

Posted on April 23, 2018
Author: Eleanor B. Ericson, RN
Category: Mesothelioma

This 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

Posted on April 2, 2018
Author: Eleanor B. Ericson, RN
Category: Mesothelioma Nurses

Being 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.

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Posts by: Eleanor B. Ericson, RN