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Posts by: Lisa

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Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.

Ban Asbestos to Prevent Mesothelioma

asbestos mesotheliomaThe way to prevent mesothelioma is by banning asbestos.  Research is vital in making progress for a cure.  Banning asbestos in the United States will prevent future generations from acquiring these asbestos related diseases.

The Center for Disease Control- CDC- is charged with protection of public health and safety through the control and prevention of disease.  As noted on the CDC website asbestos victims are still threatened by mesothelioma and other issues caused by asbestos exposure. According to data, an estimated 1.3 million construction and general manufacturing workers are potentially being exposed to asbestos.  Approximately 1,700 metric tons a year of asbestos is still used in the U.S. in a wide variety of construction and manufacturing applications.

OSHA has tried to enforce limits of what is legal in the work place.  OSHA has also taken the position that no level of exposure is safe.  In 1989, the Environmental Protection Agency attempted to ban asbestos but were unsuccessful because of court challenges.

Each time we have the privilege of meeting new mesothelioma patients it reminds us that mesothelioma is not going away.  We have seen patients as young as 18 and as old as 90.  These patients are not statistics — they are all unique individuals with their own story to tell. For most the asbestos exposure happened years ago.  The period from exposure to symptoms can be 20 to 40 years.

How do we raise awareness about the use and banning of asbestos in the United States?  There is one organization that is dedicated to banning asbestos, Asbestos Disease and Awareness Organization- ADAO. Linda Reinstein and Alan Larkin founded this organization in 2004 after the death of Linda’s husband, around the same time a close relative of Alan’s also died from mesothelioma.  For the 13th year ADAO is hosting a conference in Washington D.C. from April 7th to 9th at the Renaissance Arlington Capital View Hotel.

Getting involved in prevention and research for a cure is a positive way to honor all those effected by mesothelioma. Raising awareness amongst others and our government leaders that asbestos needs to be banned, educating all of us to the dangers of asbestos, can serve to honor all that have died and all that are suffering with asbestos related diseases.

– Lisa

The Importance of Communication in Your Mesothelioma Journey

Communication is essential in life and even more so when dealing with a new diagnosis of mesothelioma. Dealing with the news on an emotional level and on an intellectual level can be overwhelming. Trying to educate yourself about this rare, very complex cancer is best done with support from family and medical experts.

A recent study found that 60% of people did not understand the instructions that they received from their doctor appointments. Often what is said and what is heard are very different. How do you make sure that you and your medical team are on the same page? One way is to bring someone with you that can also hear what is being said. When you are under stress and emotionally overwhelmed you are more likely to misread people. If possible you need to stay in the moment. The emotions of anger, fear and anxiety are all very normal responses. As you gather all the information that you need about your treatment, try to channel your emotions in a positive direction.

One of the difficulties of dealing with a new diagnosis of mesothelioma is there are no black and white answers. Questions are asked and sometimes it seems that there are no satisfactory answers. We are used to having some control in our lives, and suddenly you are on a path that has few signs on it.
What are you willing to do to fight this disease? This is a question that only you can answer after talking to your mesothelioma doctor. Do their recommendations work for you? Is the treatment plan one which you understand?

This past week, we observed two patients in two different situations. One was not going to come to a mesothelioma center- he was going to stay close to home and have his local doctor treat him. The local doctor was the one uncomfortable with his decision. He wanted the patient to explore some options in a mesothelioma center. He talked to the patient and his family multiple times, educated them on options and now the patient will be seen at a mesothelioma center. The second patient had scoured the internet, and found out as much information as possible, made her own appointment and was also going to be seen at the mesothelioma center.

Communication played a critical part in the mesothelioma journey of both the patients and families. Communication is a two-way street involving listening and talking. Before you make the decisions regarding your treatment options with mesothelioma, be sure to gather the facts, and listen with an open mind to your options. Being comfortable with your care team is essential. Being able to ask the tough questions and hear the answers that are given will help both the patient and the family deal with mesothelioma. Communication styles vary, know what your options are, and what you are comfortable with- it is your journey.

– Lisa

Mesothelioma and the Armed Services

armed services mesotheliomaThis past weekend I had the honor of attending the Army- Navy football game. Although Army won, it was an experience of a lifetime. As we observed American finest young men and women in the prime of their young lives, healthy, it seemed like a foreign thought that some of them in the future could become victims of mesothelioma by simply choosing to serve their country.

According to the World Health Organization web site, there are about 125 million people in the world exposed to asbestos in the workplace. All forms of asbestos are carcinogenic to humans. Approximately half of the deaths from occupational cancer are estimated to be caused by asbestos.

How did asbestos become one of the most significant environmental carcinogens on our planet? How does exposure to asbestos from many years ago cause people to be diagnosed with deadly cancers and others to develop pulmonary diseases such as pulmonary fibrosis, malignant mesothelioma of the pleura and peritoneum, and others exposed to asbestos not develop diseases?

Asbestos is a naturally occurring mineral fiber that is in rock and soil. There are six major forms of asbestos: chrysotile, crocidolite, amosite, anthophylite, tremolite and actinolite. “White” asbestos is chrysotile, “blue” asbestos is crocidolite. These two forms are the primary asbestos found, with chrysotile being by far the most prevalent.

The history of using asbestos as a fire retardant goes back centuries. At some points in recent history asbestos was used in different forms for food and many building materials. Asbestos continues to be used today in many products. Although not banned in the United States, it is regulated by the Environmental Protection Agency and the Occupational Safety and Health Administration.

Exposure to asbestos can cause cancer. Approximately 33% of malignant mesothelioma victims are veterans of the armed services.

On this late Fall afternoon looking at the future leaders of our military, we are proud of these young men and women, and wish them nothing but the best. The best does not include exposure to asbestos while they are doing their job.

– Lisa

The Use of Immunotherapy and PD-1 Inhibitors in Treating Mesothelioma

The mesothelioma community is hearing about different immunotherapy options that are currently being researched. To review – cancer immunotherapy is an emerging avenue to treat cancer. This promising line of research has become an important part of treating some cancers. Immunotherapy is treatment that uses part of a person’s immune system to fight cancer. The immune system is a unique system comprised of organs, special cells, and substances that help protect from germs that can lead to infections and diseases. The immune system is the body’s protector to help maintain health. Usually the immune system can recognize foreign substances but since some cancers are known cells that start replicating wildly, the immune system is slow to respond and doesn’t recognize cancer cells as foreign. Researchers have found different prototypes to help the immune system recognize cancer cells and strengthen its response. The main types of immunotherapy that are now being used:

  1. Monoclonal antibodies: man- made versions of immune system proteins- substances found in the immune system- designed to attack a very specific part of the cancer cell.
  2. Immune checkpoint inhibitors: drugs that take the brakes off the immune system which help it recognize and attack cancer cells
  3. Cancer vaccines: substances injected into the body to start an immune response against certain cancers
  4. Non-specific immunotherapies boost the immune system in a general way and help the system attack cancer cells.

Immune checkpoint inhibitors have the ability to distinguish between normal cells in the body and those it sees as “foreign.” These allow the immune system to attack the foreign cells while leaving the normal cells alone. PD-1 is a protein on immune T cells. It acts as a type of on and off switch that keeps T cells from attacking other cells in the body. Progress has been made in this area with drugs that target PD-1 -Pembrolizumab (Keytruda) and Nivolumab (Opdivo).

One of these types of immunotherapy- immune checkpoint inhibitors- is showing some early promising results in clinical trials. In an article written by Giovanni Luca Ceresoli, Maria Bonomi, and Maria Gratzia Sauta, “Immune Checkpoint Inhibitors in Malignant Pleural Mesothelioma: Promises and Challenges,” published in May of 2016 indicates that Phase 1 Trials involving PD-1 and PD-L1 inhibitors are ongoing with early promising results. One of the most promising statements from the article is, “the emergence of these new therapies is going to change the whole cancer therapy scenario in the next few years. Based on this upcoming evidence, therapy with immune checkpoint inhibitors is being evaluated also in patients with malignant pleural mesothelioma.”

As these early results are promising it takes time and money to continually evaluate the response of the new drugs in the treatment of malignant pleural mesothelioma. The fact that they are being used for certain cancers is an encouraging sign that they might be helpful in mesothelioma. Once again seeing these results reminds us of the vital importance of participation in clinical trials.





Dealing with Anger in Your Mesothelioma Journey

Anger is an emotion that can develop any time during your journey of Mesothelioma. It often is the first reaction that a patient experiences after receiving a Mesothelioma diagnosis. Patient sometimes are angry about what it has done to their lives, or how they contracted this disease. Patients sometimes feel guilty about this emotion and do not know how to express it. These sentiments can be manifested and result in depression which also has to be monitored. Anger can be exhibited in many different expressions. Patients often will verbally lash out at the ones they love. They don’t blame their family and friends for their disease, but these caretakers and family members provide a safe repository for this anger.

We have been following a patient who has exhibited a lot of anger. He feels frustrated about his recovery. He is refusing to have family or friends visit him because his physical appearance has changed as he has lost a significant amount of weight. Every activity is a day’s event. The energy it takes and the fatigue he feels is overwhelming. He does what is expected but it is really hard for him. He also feels frustrated about relying on medicine to help him with the pain. He is angry about his overall situation and his frustration and anger is now having a negative effect on his caregiver.

These emotions are not right or wrong, unfortunately they are a by-product of this and many other diseases. Sometimes patients will express anger when they are actually feeling another emotion. Often anger is actually a reaction to sadness or hopelessness. If it all possible, it is best to avoid taking out anger on others. If you can direct your anger at the cause of the anger itself, rather than a person, there will be no hurt feelings. Sometimes it is hard to manage your feelings and counseling can possibly be helpful.  One on one or group counseling may be available.

Sometimes good can come out of having this emotion. Anger can turn into positive energy. Research has shown that anger can make us push on toward our goals. When used constructively it can make a patient more powerful. Expressing anger is justifiable and can strengthen relationships.

Anger is a strong emotion and sends a clear message that something has to change. Once we analyze the cause of our anger we can identify what changes need to happen and how to proceed to make these changes, which may include physically moving forward, getting counseling, or talking with loved ones about what you are angry about.

Anger can be positive; we just have to figure out the message it is sending us.

– Lisa

Blood Clots and Mesothelioma

One of the presenting symptoms for mesothelioma can be shortness of breath. Just as mesothelioma is difficult to diagnose because of the many vague symptoms, so are blood clots. Shortness of breath is the common presenting symptom for many conditions – one of them can be blood clots. A blood clot is a gel like mass formed by platelets and fibrin in the blood to stop bleeding. At times patients who have mesothelioma develop blood clots. This can be very harmful because blood flow is interrupted or decreased to its path. Some of the risk factors for blood clots are: atrial fibrillation, prolonged immobility, smoking, birth control pills, and any type of surgery, and clotting disorders.

Symptoms of blood clots in the leg also known as DVT (deep vein thrombosis), can cause pain, redness and swelling. Blood clots in the lung are much more serious and symptoms can include chest pain, shortness of breath and fast breathing. Serious complications can arise if you have a blood clot and it is recommended that you get medical care immediately. A thrombus is the medical terminology for clot. Many times a thrombus forms as the natural way to repair a process that has occurred. Blood clots form when the lining of the blood vessel has been damaged either to an artery or vein. The blood can become stagnant and form small clots which can occlude or block the vein from blood flow from returning to the heart.

A pulmonary embolus is a dvt that has broken off and flows toward the heart and becomes lodged in the pulmonary artery. This inhibits the lung from functioning and can cause serious illness or death. An embolus is the medical term for a blood clot that has moved within the bloodstream to a different location. A couple of things happen to the lung if this happens, the lung becomes compromised because of lack of blood flow and the blood supply is compromised therefore the lung cannot provide oxygen to the body.

The treatment for blood clots whether it be a DVT or pulmonary embolus is to stop the clot from getting bigger and keep new clots from forming. Blood thinners or anticoagulants are used to decrease the formation of clots and help blood clots from getting larger and prevent clots from forming. If you have a DVT, treatment with blood thinners is usually prescribed for 3 to 6 months. If you have had clots previously, the treatment may be longer. The most common side effect of blood thinners is bleeding. Depending on the anticoagulation medication you are prescribed, you may have blood drawn so your physician can titrate the dose of the blood thinner to your needs. If the clot is a pulmonary embolus it can be life threatening. The treatment can be a medicine call thrombolytic. This is a drug that can quickly dissolve a clot. It is used to treat large clots that cause severe symptoms. These thrombolytic are only used during life threatening situations. Another solution is that a filter can be inserted inside a large vein called the inferior vena cava. The filter catches the clots before they can travel to the lung but will not stop the formation of clots.

In caring for mesothelioma patients we often are dealing with clots. They are always a concern. Even with preventative care some patients are still susceptible. When clots are suspected an immediate ultrasound is ordered. Post-surgery, many professionals are anxious to get the patient up and walking for many reasons. One of the reasons is that moving can help prevent clots. So the next time your healthcare provider suggests you get moving remember it could save your life. It is important to also recognize that if you suddenly become short of breath, don’t ignore it- seek medical attention.

– Lisa

Drug Development and Clinical Trials: Importance to Mesothelioma Patients

Recently I had the opportunity to attend a conference regarding drug development from basic research through clinical trials held in Boston. The objective of the conference was to cover the entire drug development process, and to increase awareness of the challenges, and the trends, facing drug research, and development.

One of the conference topics was rare diseases. The working definition of a rare disease in the United States is, “a disease that effects fewer than 200,000 Americans at any given time.” . Mesothelioma can be classified as a rare disease. Some of the other benchmarks of a rare disease also fit a mesothelioma diagnosis. A rare disease can be difficult to diagnose, often leading to a delay in treatment. There is no existing cure- again mesothelioma has no cure. Information is limited on the disease and treatment. There are approximately 7,000 rare diseases, only 5% have active treatments. Patients and their families that have rare diseases, are often searching for clinical trials and in the process become experts on their disease.

The challenges that exist regarding clinical trial information and getting this information to the public’s attention was also discussed. One of the initiatives that will soon be in place is from the Cancer Moon Shot Initiative which involves an improvement at the web site . Plans are being finalized to have the web site become more user friendly for both patient and doctors. There are bio-tech firms working on a way to integrate a clinical trial opportunity into the medical record, alerting both the patient and the MD that they might qualify for a clinical trial.

Support for both patients and families was also discussed. The patient and the family can use the knowledge that they have to spread awareness about the disease. They can use their resources, ask questions, and empower themselves to advance their loved one’s cause.

The mesothelioma community, although small, is a good example for others that suffer from rare diseases. They have raised awareness, are fighting for funding, and help support each other.

On Sunday September 25th on Good Morning America, consumer advocate Erin Brockovich, announced that she was taking mesothelioma on as a cause. She is intent on raising social awareness, to help to wipe out mesothelioma. Mesothelioma and other asbestos related diseases, are a threat to our health and safety. She challenged all of us to get active, empower ourselves, let our voices be heard.

The mesothelioma community is now being joined by a famous consumer advocate. We look forward to her energizing the community!

We recognize the importance of clinical trials to mesothelioma patients. This is why we have created, and updated every three months, the Mesothelioma Clinical Trial Digest, which contains user-friendly information for all clinical trials for pleural and peritoneal mesothelioma in the United States. Let us know if you would like this book or if you need help.

– Lisa

Nutrition: An Important Part of Fighting Mesothelioma and Other Cancers

nutrition and mesotheliomaIn a study published in 2011 of pleural mesothelioma patients, 30% presented with unexplained weight loss. Losing weight for no reason can be a presenting symptom for different cancers. During a patient’s journey with cancer most all patients lose weight at some point. Some lose before and during treatment.

We know how difficult it is to balance having cancer and maintaining good nutrition. Often when one does not feel well the last think they may want to do is eat. Cancer treatments can affect the ability to taste and smell, thus limiting one’s appetite and their ability to eat enough calories and nutrients. Anorexia, the loss of appetite or desire to eat, is the most common symptom patients have. Cachexia is the term used to describe a metabolic disorder that affects as many as 80% of patients with advanced cancer. It involves extreme weight and muscle loss. The addition of more calories does not reverse cachexia. It affects patients in the late stages of many chronic illnesses such as heart failure, COPD, and kidney disease. Cachexia is being studied and different drug trials are being used in the hopes of reversing this condition. Cachexia is devastating to the patient and their loved ones as it is a constant reminder of how sick they are.

Eating healthy and including vegetables and fruits in a diet is not always the most appetizing when one is undergoing cancer treatment. Sometimes any calories are good calories during cancer treatments. If one is striving to maintain a healthy weight, high calorie foods can be your best defense.

Today while speaking with a patient, Mrs. P. who is undergoing radiation, she explained that she gets weighed once a week and to her surprise, she had lost 2 pounds. She knew in the past she had not been the healthiest eater, but thought she had been doing a good job with her nutrition as of late. Mrs. P. felt disappointed in herself, but she is 3 weeks into radiation and “not giving up.” The side effects of weight loss can include feeling physically weak and having the inability to keep up with daily activities. If you are already underweight this can be dangerous territory, especially psychologically. Therefore it is important that you are maintaining a healthy weight because you will feel good about yourself and in turn, better about your treatments.

Everyone’s diet will be unique depending on their diagnosis and individual needs. If you are currently in the middle of treatment, it is best to seek out a dietician. There are resources for patients seeking help. Consult your doctor for a recommendation.

Nutrition is a very important component in fighting cancers, including mesothelioma. As stated before, high calorie foods, along with protein nutritional supplements like Ensure or Boost can add calories to your diet. If you choose Ensure or Boost think about adding ice cream to it. If pain is an issue, take your prescribed medicine and then try to eat. If nausea is the culprit, medicate yourself before it becomes a major issue. Maintaining a healthy weight is going to require work. The goal is to not let the weight loss get ahead of you.

– Lisa

Steve McQueen and the Will to Fight Mesothelioma

steve-mcqueenI recently read an article that was written about a man named Steve McQueen who had Mesothelioma. Steve McQueen was a famous movie actor in the 1960’s and 1970’s. This article was published in The New York Times almost 25 years since his passing. When reading the article, many things stood out to me. However, what stood out to me in particular was his path. When someone told him he had no more options in regard to his illness, he still moved forward.

The article briefly stated that Steve McQueen was diagnosed in December of 1979 with mesothelioma. His symptoms included a cough and shortness of breath.  His prognosis was poor and his treatment included chemotherapy and radiation. Unfortunately, by the time press had gotten hold of his diagnosis in the 1980s, his doctors had already run out of options to treat his disease. Faced with this challenge, he set off for Mexico in July with hope of finding a treatment to a rare incurable disease. In Mexico, his treatment plan included vitamins, minerals, massages, injections of cell preparation just to name a few. He also had to undergo surgery in November of 1980 to remove some of the tumors that were in his abdomen and neck. The next day Steve McQueen passed.

What caught my attention most was the length that someone will go to beat this disease. Yes, not everyone has the same options as Mr. McQueen but the drive to get better cannot be bought or provided for someone. I recently met a man through work who came to a mesothelioma center with nine dollars in his pocket, no place to stay, just an appointment. Maybe this was not the most well thought out plan but the idea that one will do anything to get better is inspiring. This article and many other stories make me reflect on different situations in which people find strength and are willing to do anything to fight this disease.

Another situation also occurred where I met a patient whose son was a physician. The son had suggested to his dad a holistic approach and enemas. While this was not what the doctors had prescribed, they were willing to try anything to beat this disease, or at least lessen the pain. People are willing to do anything. That is what a mesothelioma center is about. Here, people are willing to fight the fight with a patient. A specialized center has more to offer than just standard care. As I reflect back, this drive was present in so many patients who passed through a center. Sometimes that was not enough but knowing that one did everything must bring peace.  I have often heard doctors say to patients “what do you want? Do you want to fight” These are very simple questions but the answer is even more powerful.

– Lisa

Why it is Important for Mesothelioma Patients to Set Goals

GoalsMany of us plan so much for our lives, however, sickness is usually not included in the equation. We plan our marriages, children, vacations, but illness is not one we plan for or foresee. As a professional in the medical industry, we meet many types of patients.  For instance, some patients want to know everything about their illness and others desire to know nothing at all. Despite what type of person they are, the first step in fighting an illness is a plan. Most people who plan appear to mentally have an easier course. Goals are what make us get up every morning and work hard. Goals become measurable and let us see improvement. That being said, it is important to have measurable goals. This is something people can still stick to even when everything is not going according to plan. In simple terms, when someone is diagnosed with an illness, the ultimate goal is to achieve better health.

According to a study, when one writes down their goals, they often have greater success. Writing down your goals helps to reinforce your commitment to them. It also helps you remember them and makes you accountable to them. Having goals keeps you focused. When some people become sick, they believe that they will just go with the flow, and simply leave the health improvements to the doctor. However, this creates an imbalance and ultimately fails in the long run. You are part of the equation and we need you to participate. This is your health and you are the determining factor of whether or not a treatment plan will work.

When diagnosed with mesothelioma it has been suggested that people who focus on certain goals before, during and after treatment are better off physically and emotionally. Start with taking a walk every day. Focus on your diet: a high protein, low-sugar diet is recommended along with a multivitamin everyday. Attention to sleep is also important. Becoming aware of sleep problems and management of the effects of sleep disturbances will help your overall well-being. Keeping your spirits up and communicating what you are feeling is very important for your health.

Once you start treatment the care team has a plan for you and you should be aware of it. Having a plan helps you have a strategy which will then help you achieve your ultimate goal of better health. When you visualize your goals, you are putting your plan into action. A lot of goals can include physical activity. If you can see yourself walking after surgery on day 1, that is a huge success. In your mind, you must visualize yourself getting out of bed and keep in mind how you will feel when you obtain your goals. Discuss with the nurse and make a plan for yourself and collaborate on ideas. Collaboration is the key when it comes to achieving your goals.

– Lisa

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Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.

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