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Update on Clinical Trials: Summer 2019

Eleanor Ericson Mesothelioma NurseClinical 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 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.

Mesothelioma Clinical Trial – July 2019

Lisa Hyde-Barrett, RN Mesothelioma Nurse

We encourage participation in clinical trials for research leading to a cure for mesothelioma. It is known that nationally the statistics for participation in adult cancer trials is between 3-5% of adults who have a cancer diagnosis.

For mesothelioma patients and families that are interested in clinical trials, researching clinical trials and eligibility can be a time-consuming barrier to participation. The information about clinical trials is available on

Our goal is to feature one mesothelioma clinical trial monthly and break it down to understandable terms, to decipher the eligibility requirements, and to possibly encourage participation in these trials.

The official title to the Clinical Trial; Stereotactic Body Radiation Therapy and Avelumab Immunotherapy for Treatment of Malignant Mesothelioma.

Purpose: The purpose of this study is to find out whether the combination of avelumab and Stereotactic Body Radiation Therapy- SBRT is safe and what effect avelumab has on mesothelioma when given in combination with SBRT. In addition, a goal of this protocol is to study the effect of radiation therapy on the immune system.  It is thought that radiation treatment may create a form of “vaccine” against cancer inside the body and immunotherapy may improve this effect. The combination of radiation treatment and immunotherapy may be more effective against cancer than either radiation or immunotherapy alone.

Sponsor: Memorial Sloan Kettering Cancer Center in collaboration with Pfizer.

Start Date: December 20, 2017

Completion Date: December 2020

Estimated Enrollment: 27 participants

How it Works: Treatment consists of one dose of avelumab every other week as well as a short course of SBRT after the first two doses of avelumab. The drug, avelumab is delivered by IV infusion. The SBRT is given after the first two doses of avelumab.


Inclusion:  Over age 18

      Be willing and able to provide written informed consent

Histologically or cytologically confirmed malignant pleural or peritoneal mesothelioma.

No plans for surgical resection

At least one prior line of systemic therapy. Patients on prior immunotherapy are eligible.

At least one targetable lesion appropriate for palliative SBRT and one non-target lesion.

Karnofsky Performance Score > 70%

If of childbearing potential, must be willing to use highly effective mode of contraception

For at least one month prior, during, and for 2 months after the end of active therapy

Adequate organ function demonstrated by lab tests- see  for parameters

If the patient received major surgery, they must have recovered adequately from the toxicity and/or complications from the intervention prior to starting therapy.   


Currently participating and receiving another study therapy or has participated in a study of an investigational agent and received study therapy or used an investigational device within 4 weeks of the first dose of treatment.

Prior radiation therapy precluding SBRT

Continuous oxygen use

Current use of immunosuppressive medications- for exceptions see

Active autoimmune disease that might deteriorate when receiving an immunostimulatory agent.

Known prior severe hypersensitivity to investigational product or Ny component in its formulations, including known severe hypersensitivity reactions to monoclonal antibodies.

Patient who rapidly progressed on prior immunotherapy, as determined by the treating physician, are not eligible.

Prior Therapies:

  1. Treatment with a monoclonal antibody within 4 weeks prior to study Day 1 or has not recovered from adverse events due to agents administered.
  2. Prior chemotherapy, targeted small molecule therapy, within 4 weeks prior to study Day 1 or has not recovered from adverse events due to previously administered agent.
  3. Prior therapy with an anti-PD-1, anti-PD-L1, anti-PD-L2, anti-CD137, or anti-Cytotoxic T-lymphocyte- associated antigen-4 (CTLA-4) antibody (including ipiliumab or any other antibody or drug specifically targeting T-cell co-stimulation or checkpoint pathways) within 4 weeks prior to study Day 1or has not recovered from adverse events.

Comorbidities or Prior Conditions

  1. Known psychiatric or substance abuse disorders that would interfere with cooperation with the requirements of the trial.
  2. Prior organ transplantation including allogenic stem-cell transplantation.
  3. Known additional malignancy that is progressing or requires active treatment. Exceptions include basal cell carcinoma of the skin, squamous cell carcinoma of the skin, or in situ cervical cancer that has undergone potentially curative therapy.
  4. Known history of active TB
  5. Known history of HIV or known acquired immunodeficiency syndrome.
  6. Active Hepatitis B virus (HBV) or Hepatitis C virus (HCV) infection at screening or positive serologies indicating prior infection.
  7. Active infection requiring systemic therapy.
  8. Evidence of interstitial lung disease or active, non-infectious pneumonitis.
  9. Clinically significant cardiovascular disease, cerebro vascular accidents/stroke, myocardial infarction, unstable angina, congestive heart failure, or serious cardiac arrythmia requiring medication.

Pregnant women or women who are breastfeeding or of childbearing potential and not using a highly effective means of birth control.

Vaccinations within 4 weeks prior to the first dose of avelumab and while on trial is prohibited except for administration of inactivated vaccines.

Concomitant use of the following medications

  1. Any investigational anticancer therapy
  2. Any concurrent chemotherapy, immunotherapy, or biologic therapy.  Concurrent use of hormones for non-cancer related conditions (e.g. Insulin for diabetes and hormone replacement therapy) is acceptable.
  3. Immunosuppressive medications including, but not limited to systemic corticosteroids, methotrexate, azathioprine, and tumor necrosis factor alpha blockers. Use of immunosuppressive medications for the management of investigational product-related AEs, in subjects with contrast allergies is acceptable. In addition, use of inhaled and intranasal corticosteroids is permitted.

Known contraindications to radiotherapy.

Contact: Andreas Rimner, MD 212-639-6025  
Contact: Marjorie Zauderer, MD 646-888-4656


Definitions from

With any clinical trial, all participation is voluntary.  Before enrollment a detailed consent form will be reviewed with the participant and signed.  The participant can withdraw from a clinical trial at any point in time. Think about participating if able, the only way to progress to a cure for mesothelioma is through clinical trials.


A type of therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection, and other diseases. Some types of immunotherapy only target certain cells of the immune system. Others affect the immune system in a general way. Types of immunotherapy include cytokines, vaccines, bacillus Calmette-Guerin (BCG), and some monoclonal antibodies.

Stereotactic Body Radiation Therapy

A type of external radiation therapy that uses special equipment to position a patient and precisely deliver radiation to tumors in the body (except the brain). The total dose of radiation is divided into smaller doses given over several days. This type of radiation therapy helps spare normal tissue.


A drug used with axitinib to treat advanced renal cell carcinoma (a type of kidney cancer) that has not already been treated. It is also used to treat urothelial carcinoma (a type of bladder cancer) that is locally advanced or has spread to other parts of the body. It is used in patients whose disease got worse during or after treatment with anticancer drugs that included platinum. Avelumab is also used to treat Merkel cell carcinoma (a rare type of skin cancer) that has spread to other parts of the body. It is also being studied in the treatment of other types of cancer. Avelumab binds to a protein called PD-L1, which is found on some cancer cells. Avelumab may block PD-L1 and help the immune system kill cancer cells. It is a type of monoclonal antibody and a type of immune checkpoint inhibitor. Also called Bavencio.

Immune system

A complex network of cells, tissues, organs, and the substances they make that helps the body fight infections and other diseases. The immune system includes white blood cells and organs and tissues of the lymph system, such as the thymus, spleen, tonsils, lymph nodes, lymph vessels, and bone marrow.


Lisa Hyde-Barrett, RN Mesothelioma NurseAs new innovations and treatments emerge, there is growing hope in the mesothelioma community. We have written about clinical trials, chemotherapy, surgical interventions, palliative care, radiation therapy and more, but behind all this research into different treatment modalities, there is a passion that drives us to work towards a cure. According to Webster’s Dictionary, the definition of passion is a “strong feeling of enthusiasm or excitement about something or about doing something.” Passion is exactly what we experienced at a conference last week in New York, surrounded by doctors, nurses, advocates and caregivers.

The International Association for the Study of Lung Cancer (IASLC) hosted a conference for the mesothelioma community to share their findings related to research into mesothelioma. Because mesothelioma is an international issue, there were experts and researchers from all over the world collaborating, sharing research, and debating on cutting-edge research and treatments for this disease. Throughout the conference, there was a common and shared passion to keep going forward, to learn from others’ experiences and stay informed on which treatments have worked and which do not.

As we convened in a conference area, many shared more private and personal stories of hope and success in fighting this illness. Shared stories have a way of bringing the mesothelioma patient’s experience to the people behind the scenes, who use the information for passion to continue and innovate in their research. Mesothelioma is a rare disease, and to have world-renowned experts collaborating and sharing is a testimony to the passion of the mesothelioma community.

Each month at our Mesothelioma Center, we meet many new patients, each with new stories about how this disease has affected them. Fortunately, we all have passion in treating this disease and not one of us – doctor, nurse, patient nor caregiver – has ever given up. We are a group of healthcare professionals who found ourselves caring for people who have a rare disease. While the challenges of treating mesothelioma are ever present, it is our passion that drives us to get to know each patient, stay connected and informed with the mesothelioma community, and dare to try new treatments in hope for the best.

When finding a mesothelioma center and a team to treat you, be sure to be mindful of the passion. It is a feeling of encouragement and energy that cannot be found anywhere else. Passion is not taught in medical or nursing school; it is found in a team of people who care and want to see patients have the best possible outcome. There are plenty of other places people could have chosen on a humid summer’s day in New York City, but the mesothelioma community chose to be at the IASLC conference and contribute their discoveries to the world. There was hope and passion from all, and this will help develop more treatments.

Malignant Pleural Mesothelioma Affects All Types of People

Lisa Hyde-Barrett, RN Mesothelioma NurseMesothelioma, as we know, is caused by exposure to asbestos, which has long been associated with blue-collar industries such as construction and maritime trades. Yet, as we continue treating patients, we meet many people with mesothelioma who do not fit in these categories. This week, we met with two patients, one of whom is a local teacher and the other a healthcare professional. Both of them are under 60 years of age, one a female and one a male. One of them was very physically active and was experiencing an uncommon shortness of breath; the other had a pain on their right side which was getting worse.

The teacher and healthcare professional come from very different areas of the United States, and are unsure of how they were exposure to asbestos. Both have different mesothelioma types and locations within their bodies. (Unfortunately, mesothelioma strikes important organ clusters. For example, mesothelioma cells can start growth in the lungs, the diaphragm, and the heart.)

No matter your sex, age, or ethnicity, many people have the diagnosis of mesothelioma in common. For everyone, it is important to seek out medical opinions. Each diagnosis came from their respective local hospitals, but fortunately, both ended up at a Mesothelioma Center, where advanced treatment options are available. Still in 2019, people are unaware of mesothelioma specialists and that there are treatments offered. Mesothelioma may be a rare disease, but there are so many support options. For example, there is assistance with travel to a Mesothelioma Center if needed, and often, there is help for lodging expenses available, too. At a Mesothelioma Center, each case is evaluated, and treatment options are recommended based on your disease stage, what treatments you are eligible for, and what you are comfortable with.

Experience With Humility

Eleanor Ericson Mesothelioma NurseWe 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

Eleanor Ericson Mesothelioma Nurse

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.


Lisa Hyde-Barrett, RN Mesothelioma NurseWe write a lot about the physical symptoms of Mesothelioma and are always trying to help people with the pain, shortness of breath or any other physical limitations. Today we are writing about what people experience mentally when being diagnosed with Mesothelioma. Mesothelioma, like any other cancer, leaves the patient feeling fearful, sad, and scared, to name a few. The brain is a powerful organ and it controls our thoughts and emotions. The part of the brain that is responsible for this is the limbic system. The center of the emotional processing center is the amygdala which receives input from other brain functions. Emotions are controlled by the levels of different chemicals in your brain. For example, if you are in danger your brain will release hormones that make you react faster. The hormone is known as adrenaline. Emotions are powerful and your mood determines how you react to certain scenarios. Developing a skill set to learn how to control your emotions can be done but it requires practice and patience.

The first thing you should do is identify the emotion that you are experiencing. If you suppress your emotions or ignore them, that does not mean they will go away. If you feel sad or frightened, you need to identify and acknowledge this is how you feel. The next step would be to reframe your thinking pattern. If you are anticipating the worst when you see the doctor, you may not be able to fully understand what they physician is saying because you have already painted a bad scenario in your head. Try to open your mind and pretend you are looking through a magnifying glass with no smudges and the lens is perfectly clear. The lens is your brain with no preconceived notion. Another suggestion would be to do something to break those emotions that seem to persist and nag at you. Engage in something that makes you feel good. Many times, people go for walks, or visit someone to take their mind off their own issues. If you want to feel positive you must do something positive. Some people will meditate or listen to some upbeat music. Practicing managing your emotions does not happen overnight but the more you invest the better the outcome.

We know how treatments and recovery can be physically draining but keeping your emotions in check will improve you mentally and physically. If these suggestions are not helpful try reaching out to a medical professional who may be able to steer you in the direction of some professional aide. Throughout medical centers there are psychiatrists, social workers, and chaplains. Don’t give in and just say this is how I am supposed to live. Many people have learned to teach themselves not to get bogged down by these emotions. Your body is fighting Mesothelioma and your brain is fighting the mental part of the disease. Get up each morning and give it your all. This is by no means an easy task, but you are worth it.


Eleanor Ericson Mesothelioma Nurse“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

Eleanor Ericson Mesothelioma NurseOn 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.

Tool Box – Making Life Easier

Lisa Hyde-Barrett, RN Mesothelioma NurseWhen you want to fix something, whether you’re a master craftsman or a Do-It-Yourselfer, you rely on your tools. What does a person diagnosed with malignant mesothelioma need in their tool box?

If we put together a tool box for patients arriving at a Mesothelioma Center, we would put in some simple things that could make a huge difference in the journey.

We would start with a scale, so you could weigh yourself daily. Something as simple as weight can tell a mesothelioma team if the patient is consuming enough calories, or if they are retaining fluid. When recovering from mesothelioma treatments, it important to weigh yourself at the same time every day. You would be surprised at just how much a fluctuation in weight could tell a healthcare professional. Often, a patient feels short of breath, only to discover their weight increased 2-3 pounds overnight. Shortness of breath often precedes weight gain, but the scale could confirm your fluid retention.

Another item we would include is a pill box. We have all seen them and they can be useful if you are taking more medications than usual and feel overwhelmed. You or a family member can set it up for a week or two, which allows for fewer errors. Patients who use pill boxes often feel more in control and confident about when they are taking their new medications. Some local pharmacies may even help with this task; you will just have to check with your individual store.

We would also add a journal for writing about your feelings and experiences along your journey. This can be a great device to reflect upon where you have been and how you have changed, both physically and mentally. When you have moments of doubt in your treatments, your journal can show you how much progress you have made. Taking care of your mental and physical health during this period is critical. Many people feel anxious or overwhelmed by thoughts that plague them since being diagnosed with mesothelioma. A journal can help act as an outlet for these worries and fears, and it can be therapeutic for many people with malignant mesothelioma to let go of some of these feelings. A journal can track how much you exercise. It is good to walk outside for 20 minutes, go to physical therapy, participate in a meditation course, or clean your house for an hour. Physical activity can make a world of difference in helping us feel strong and in control.

If there was only one more thing we could include, it would be a water bottle to measure the amount of fluids that you drink. When coping with mesothelioma, many people lose their desire to drink fluids. Measuring your intake can keep you on track about staying hydrated. Regularly drinking fluids can help you fight off dehydration and dizziness, avoid drops in blood pressure, and help you feel better overall. Using a bottle with simple markings can help you stay on your game and keep yourself well hydrated.

None of these tools have to be elaborate or high-grade medical equipment; in fact, most are already somewhere in our houses. The core idea of your tool box is to help you have equipment at your disposal to make life easier.

Gathering Information

Eleanor Ericson Mesothelioma NurseAt 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

Eleanor Ericson Mesothelioma NurseOur 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” (

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?

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, 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,, 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!

Mesothelioma is a “Rare Disease”

Lisa Hyde-Barrett, RN Mesothelioma NurseA rare disease, by definition, must affect only a small percentage of the population.  In the United States a rare disease is defined as a disease that affects fewer than 200,000 people in the country. Worldwide, there are over 6,000 rare diseases that affect over 300 million people. Each disease is unique in its effects and treatment, and due to the rare nature of these diseases, they often lack the same resources and treatment options as more common health problems. People suffering from rare diseases, along with their caretakers, often have difficulty finding experienced doctors. Often it requires multiple appointments and experimental medications to determine a health care path. Managing a rare disease can be physically, emotionally, and financially challenging. It is extremely stressful without support systems of others who suffer from the disease.

Every year there is a specific day that is set aside to recognize these diseases, usually the last day of February each year. This year, it will be February 28, 2019. This year’s theme is “Bridging Health and Social Care”. What exactly does this mean?  It is focusing on the challenges of coordinating care between the medical field and social and support services. If you have been fortunate enough not to be affected by one of these diseases, you would be astounded by the amount of time and energy that a patient or a caregiver expend daily to fight their “rare disease.”

Mesothelioma falls under the “rare disease” category. Approximately 3,000 people are diagnosed with this disease annually. While there are many treatment options available at Mesothelioma Centers and larger health centers, these facilities are not always easily accessible.

As patients and families struggle with this disease, we know there are options: there are numerous support services for this disease, as well as travel assistance programs which may be available to you. Every week, we see patients from all over the world come through our doors with hope. Many patients need to travel far and wide to arrive at the doorsteps of a Mesothelioma Center. However, by travelling to a major Mesothelioma Center, patients are giving themselves the best opportunity to fight this disease. The healthcare teams at Mesothelioma Centers understand travelling is not easy. Centers are usually set up with social and support services to help during these challenging times. Experience from treating others has taught us what helps. Although mesothelioma can be frightening as a “rare disease,” the medical community is making great strides to fight it. We are extending lives, and working towards a cure.

As you educate yourself about the options in front of you, know that many others have been in your shoes and followed this path. When feeling overwhelmed by it all, reach out to a Mesothelioma Center, ask questions, and become connected with our supportive and tight-knit community.

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.

Advocate – An Important Helping Hand

Lisa Hyde-Barrett, RN Mesothelioma NurseBeing an advocate is one of the most giving and selfless things you can do to help your loved one. From our years of experience, we have found advocates are critically important to both doctors and patients. It is wonderful when patients have a family member or friend who can take on this role. It is not an easy job and requires one to be on their toes and stay level-headed. It is very important that advocates understand their responsibilities and are ready for this position. Being an advocate often includes accompanying a loved one to medical appointments, monitoring medications, scheduling appointments, overseeing nutrition, planning exercise, and helping with overall well being.

There is no rule for who steps up to be an advocate. It is often a patient’s significant other, but can be their child, relative, neighbor or very close friend. While you might find classes and information on advocacy, most of learning how to be an advocate happens on the job. It can be very difficult to suddenly become the person who needs to remind their loved one to eat, drink, walk or take medicine. It helps when this is done with compassion and love.

As an advocate, it is very important that you communicate with the medical team and take the stress off of your loved one. Even scheduling appointments can be very difficult and emotionally stressful for a patient undergoing chemotherapy and battling mesothelioma. As an advocate, fight for your loved one calmly and with the strength that your loved one does not have at the moment. It is important that you be your loved one’s rock throughout this often stressful, confusing, and chaotic. Although your heart might be breaking, by remaining focused and calm you are performing an invaluable role. It is one of the most sincere and important things you can do for your loved one.

We have seen the truly inspiring relationships between patients and their advocates. Although this is a very difficult time, you can become very close, create cherished memories, and help your loved one feel comforted and loved.

Christmas Thoughts

Lisa Hyde-Barrett, RN Mesothelioma NurseThe holidays can be very difficult times for anyone, but these weeks are extremely difficult when loved ones are suffering with an illness. It is difficult, even impossible to focus on the traditional ideas of holidays, shopping, cooking and family time. As the holiday season approaches many people will be in the midst of treatment, away from home and not feeling well. Some of our loved ones are no longer with us.

I spoke with a physician last week about what really matters to our patients, and to everyone – time with people who we love. Most people who are not well or who have lost loved ones to illnesses mostly want time with people. If you are the relative or friend of someone who is suffering from Mesothelioma it would be a blessing to spend some time with them to brighten their day. It would also be a blessing to let a caregiver know that you care and support them. Most of us want to know that others think about us. Spending time together is the most valuable and memorable gift you can give someone. It is so important to visit people who are isolated because of illness. It means more than gifts. Even a friendly telephone call is a blessing. Young children stopping by to say hello bring energy, life and laughter. Time together simply cannot be measured.

As nurses we often visit with Mesothelioma patients and experience firsthand how grateful a patient is to receive a visit from a new or familiar face. We can only imagine the joy a loved one will bring to a patient. The visit will help you too. Many times, we visit patients and we comment on how much better we feel after we have seen a patient. The emotions and mood elevation one may gain from visiting a loved one or friend is very surprising.

Holidays are very difficult for those who have lost someone. Feelings and emotions are complex. The absence appears to be more pronounced around the holidays and causes heartache and feelings of sadness and loneliness. One of the things a loved one should focus on is what your deceased loved one would want for you. Most would want you to be happy, and to care for yourself, and surround yourself with other loved ones. There was a time when you spent most of your waking hours, with minimal sleep, tending to your loved one who needed you. With no regret you were glad to be the one who could do this and provide the needs and love that were required. Now it is the time to take care of you. That is what your loved one would want you to do.

Allow yourself time to heal, be with others and if you need emotional care allow someone to help you. This is a time to heal. Surround yourself with loved ones, eat healthy, exercise, start walking and regain your fitness. It is difficult to lose someone or care for someone but the best thing you can do for yourself is be kind to yourself. Think of the happiest of times with your loved one and surround yourself with people who will make you feel good.

Our blessings and best wishes to you all.

Happy Holidays!

Mesothelioma Expertise

Lisa Hyde-Barrett, RN Mesothelioma NurseResearching “mesothelioma” can be very confusing. You hope for accuracy and truth when you are desperate to find the information you need. We write from our experiences actively caring for mesothelioma patients. There is an immense amount of information on the internet, and some is quite accurate. Ours, however, is unique because we are in contact daily with people who have mesothelioma. We watch some people struggle with the disease, and see others learn to live again. We have the distinct advantage of truly knowing people with mesothelioma and we can put a face to symptoms and side effects.

Today’s blog is meant to reassure you that the information we provide is from our personal experience caring for patients who have been diagnosed with mesothelioma. This is a form of expertise, and we want to share this expertise with you. We do not profess to have all the answers by far, but we have true experience.

Over the years, we have built on these experiences. We have had the privilege of knowing and working with families, patients and other members of the team involved with patient care. We are in constant communication with physicians who care for these patients. When we see that a patient is having an issue, we are only a phone call away. We work with one of the most experienced groups of physicians who care for mesothelioma patients. We are Registered Nurses working with a team of mesothelioma specialists.

We thrive on the knowledge that the specialists are working towards a cure for mesothelioma and dream about the day that there is a cure for this disease. Until then, it is our goal to provide you with accurate information.

My goal in writing this is to advise you to be careful what you read and make sure that your information is relevant. We do not have all the solutions, but we care for patients and write about our experience. When searching out your information, take the time to find out the source of the information. Are these people writers? Are they connected to mesothelioma patients? Do they have any hands-on experience with this disease? Most of us assume that one writes about a very specific topic they must be an authority, but this is not always true.

This diagnosis is a challenging one for patients, loved ones, family members and friends. In this blog, we hope we give you accurate and helpful information, and please contact us if you need to know more about our expertise and credentials.

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