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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” (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?

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

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

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

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

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

P.S.  GO PATS!!!!

2019 Resolutions

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

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

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

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

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

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

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.

Loneliness

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

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

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

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

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

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

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

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

Sacrifice

Lisa Hyde-Barrett, RN Mesothelioma NurseIt always amazes me how much people will sacrifice to treat their mesothelioma at a major treatment center. Recently, I met someone who came to us from South America, and another family from the Middle East. Not only is the geographic distance an issue, a significant language barrier exists as well. Another example is a young woman who moved to a neighboring state to be closer to radiation therapy at a specialized center. Just last week, we met an elderly couple taking an Uber to treatment at a mesothelioma center because driving was too overwhelming. What patients will do for specialized care is endless.

Most people think they would do anything when faced with a rare cancer diagnosis, but often, obstacles get in the way. Let’s face it, it is easier to remain in the comforts of our own home, with the things we know and the people we love. Yet, patients determined to treat their disease will sacrifice the comforts of home to access cutting-edge care. Further, they will sacrifice days of their lives to get a second opinion and explore other options.

Living in hospitality homes or local hotels is not easy, but that may be the cost of going to a mesothelioma center. We hope patients understand that health care professionals know the sacrifices made when traveling distances to be treated at a center. There are resources available and, although it helps, sometimes it may feel like it is not enough. Mentally and physically these are challenging times for patients and caregivers who choose to make sacrifices during their journey.

The flip side to all this is there may be treatment for your mesothelioma, whether it is surgical, chemotherapy, radiation, palliative care or alternative care. I am one hundred percent sure that there are more options at a mesothelioma center than at a local community hospital. Your local medical center is probably a great institution, but simply does not have the experience that a specialized mesothelioma center offers. Having access to top medical treatment is so important. When days and nights seem daunting and you feel like your hotel walls are closing in on you, stop and pat yourself on the back. Remember, you are in pursuit of excellent treatment and a chance to beat this disease. Success comes hard and often must be fought for, but everyone’s life is worth it. Being fortunate enough to know about a place that can offer expert care is a gift. Not everyone knows that these centers exist and that there are treatment options. Mesothelioma is a rare disease and although you feel confident in your local practitioner, we encourage you to make the sacrifice and go to a mesothelioma center.

Individuality

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

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

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

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

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

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

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

No Cure

Lisa Hyde-Barrett, RN Mesothelioma NurseAs I was walking down the hall yesterday I heard someone saying, “My cancer is not curable but is treatable.” To date we have no cure for malignant mesothelioma, but many more treatments are available than ever. Surgery, radiation, chemotherapy, immunotherapy, alternative therapy, and clinical trials are all options for the Meso patient. This may or may not seem like a lot of choices but looking back to 10 years ago- it is huge. To have an option has not always been the case when dealing with a mesothelioma diagnosis.

Another benefit that was not so prevalent ten years ago is the support therapy that is available because of social media. I have cared for so many patients who have participated in support groups on-line, which have helped them through their mesothelioma journey. They may not be for everyone but for many they have helped make the journey less lonely.

In the United States a rare disease is defined as a condition that affects 200,000 people or less. Rare diseases, also known as orphan diseases, fall into that category because drug companies are not interested in developing treatments. This research can be costly and only a small population will benefit. Rare diseases need champions and with mesothelioma the community has champions of many different backgrounds and expertise. Although there are many treatment options, not everyone is a candidate for all options. Despite what you want, your disease and body determine the treatment that will be offered.

If you have been diagnosed with mesothelioma, ask yourself what it is that you want. The most important thing is doing what you want and having peace of mind during the journey. Surround yourself with knowledgeable professionals who can explain your options and the disease. Mesothelioma Awareness Day was celebrated on September 26, 2018. Many people shared on social media their loved ones who were and are affected by mesothelioma. As I scrolled through the entries it was staggering how many people have been affected. The number of people in someone’s life family, friends’ acquaintances, relationships that are changed due to a diagnosis of malignant mesothelioma. The pictures make it so much more real than just the statistics.

The statistics of survival are not favorable but again that too has improved with knowledge and research. If you have been diagnosed with mesothelioma or your family member has, you will agree the facts are overwhelming and scary. The flip side is that there are people currently living their lives taking trips, spending time with family and friends, and doing what they want who are being treated for mesothelioma.

This year has been an exceptional year in the world of mesothelioma. We have seen progress and hope. There have been survivors and memories being made by some while undergoing treatments. In the words of one of the first mesothelioma treatment pioneers, the late Dr. David Sugarbaker, he always spoke about hope and that it had to be part of the equation. Make the most of your days, stay positive and keep moving.

In Memoriam – Dr. David Sugarbaker

Dr. David Sugarbaker MesotheliomaServices were held for Dr. David J. Sugarbaker (August 5, 1953 – August 29, 2018) on Saturday September 1, 2018. Dr. Sugarbaker was a man who has been described by many of his co-workers as a man bigger than life. For mesothelioma patients, he was a hero who gave hope to patients when they had been told there was none. For individuals that were fortunate to work with him, he was compassionate, kind, a passionate man with a work ethic that few could match.

To sum up a person’s life in a few words, at a memorial service, in a conversation is not possible. The many brilliant accomplishments he achieved professionally will live on and affect the lives of patients and families for many years to come. His varied interests, his expertise on many subjects, his unfailing enthusiasm to get going, get it done, were legendary.

One of 10 children, son of a surgeon, mother was a nurse, raised in Jefferson City Missouri. He attended Wheaton College, Cornell Medical School, residency at Brigham and Women’s Hospital, established the Thoracic Division of Surgery at the Brigham and Women’s Hospital. He founded the International Mesothelioma Program at Brigham and Women’s Hospital in 2002. He developed and pioneered treatment options for patients with malignant mesothelioma over the course of decades, researcher, scientist, patient advocate, accomplished successful surgeon. Dr Sugarbaker spent the last four years of his professional life establishing a mesothelioma program at Baylor- St Luke’s Hospital in Houston Texas. A brief limited professional resume of Dr. Sugarbaker’s many accomplishments.

Dr. Sugarbaker’s professional accomplishments are the side of him that was known publicly. His personal accomplishments are just as impressive. He leaves a wife and six children. When talking about their father the perspective of what kind of a father Dr. Sugarbaker was, how involved with his children he was, the impact on their lives was as impressive as his professional accomplishments. His family was the center of his life. The tributes from his children were a reminder of the depth of love he shared for his wife Linda and his children and grandchildren.

Dr. David Sugarbaker was a talented healer who was able to offer hope to people when there was none.  In addition to the thousands of patients and families lives that he touched, Dr. Sugarbaker was a mentor to hundreds of thoracic surgeons. On a beautiful late summer day many came back to Boston to pay their respects and to thank him for his expertise and mentorship over the years.

Having had the privilege of working with Dr. Sugarbaker for over 30 years there are many superlatives that we can use to describe the type of man, surgeon, leader he was. To us he was generous, kind, always encouraging, with a great sense of humor. He was a visionary that was able to make an impact on all he touched.

About 10 years ago we accompanied a patient we wanted to get home to his follow-up mesothelioma appointment with Dr. Sugarbaker. We had been asking him frequently when and how we could help get him home. He greeted us by saying, “look who you brought with you today, your travel agents!”

It has been a privilege to have known Dr. David Sugarbaker, to have heard his stories, see him interacting with patients and families, and watched as he inspired the next generation of thoracic surgeons.  The mesothelioma community has lost a leader.

Rest in peace Dr. Sugarbaker, you are missed, job well done!

– Lisa and Ellie

Care for The Caregivers

Lisa Hyde-Barrett, RN Mesothelioma NurseThe role of the caregiver is an underestimated position when someone is ill. With a serious rare cancer diagnosis like malignant mesothelioma, the caregiver is a vital participant in the team. When does one begin to assume the role of the caregiver? Who decides who will take this role? Usually the caregiver is someone who has a close relationship with the person diagnosed, a wife, husband, a significant other, an adult child of the patient. Statistically it is usually a woman who assumes this role.

The responsibilities that come with this role can be overwhelming. It is a difficult role as it can affect the caregiver physically, psychologically, and emotionally. Most people are unprepared for this new all-encompassing role.

The number of individuals who at one time in their lives will assume a care giver role is staggering. According to the National Alliance for Caregiving in the U.S. and AARP, there are 35.2 million Americans who provided unpaid care to an adult 50 years of age and older within the last year.

For caregivers of mesothelioma patients, the challenges can be daunting. It can start with educating yourself about a rare disease. Getting familiar with medical words and phrases that are as difficult to pronounce as they are to understand. Accompanying their loved one to many different appointments, traveling to consultations, taking notes, assisting with physical care- bathing- grooming. Logistically organizing appointments, lodging, medications, all while emotionally supporting your loved one.

For the caregiver, mesothelioma diagnosis and the havoc it reeks can become a focal point of your life. The diagnosis can alter your life irrevocably as well as the person diagnosed. In addition to these endless tasks there is the difficult conversations that must be had. What are the patient’s wishes? What are their goals of treatment, their fears? What do they want? The answers might not be clear, but the topic has been addressed and it is on the table.

Unfortunately, there is no set of rules that one can follow to become a caregiver. In some ways it is on the job training whether you are ready or not.

As important as the role of caregiver is to a person diagnosed with malignant mesothelioma, the vital part for the caregiver has to include taking care of themselves. Over the years we have seen fantastic caregivers who forgot about themselves. They have suffered and continue to suffer long lasting effects of that decision.

On the Family Caregiver Alliance website, there is a page dedicated to care givers self-care. Some of the points are things that we see every day with caregivers of mesothelioma patients. Some caregivers learn so much about mesothelioma that they become experts. Another suggestion is to get support. There are support groups available, talk to people if support groups do not interest you. Forgive yourself -no one is perfect and no one no matter who you are can take care of someone 24/7 without a break. Allow time for yourself. You had a life before this diagnosis. Allow yourself time away to recharge. One of the most important points they make is to change guilt to regret. Guilt is you did something wrong, regret is that you are in a difficult situation and sometimes you have to make difficult decisions, but they are not wrong.

Care-giving is challenging and all encompassing, remember to be kind and forgiving to yourself and to take care of yourself.

EPA and Asbestos

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

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

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

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

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

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

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

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

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

Immunotherapy and Mesothelioma

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

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

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

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

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

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

Staging Updates

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

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

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

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

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

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

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

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

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