A Family's Guide to Dealing with Mesothelioma

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2 A Family's Guide to Dealing with Mesothelioma Introduction A diagnosis of mesothelioma can turn your world upside down. You may wonder whether you'll ever have a normal life again. Your family's future can be a concern. Fear may be at the forefront of your emotions. This is all natural. There's no right or wrong way to feel after a cancer diagnosis, and like all cancers, mesothelioma brings with it a unique set of challenges that you and your loved ones will face together. How you cope will depend on so many factors, from your personality to the severity of your disease to your willingness to arm yourself with information. Some aspects of the fight against mesothelioma will be outside the realm of your control. Education, however, is one way you can take ownership of your circumstances and be an active player in your care. This book is designed to put knowledge at your fingertips so you can be your own strongest healthcare advocate and help your family understand what it is you're going through.

3 Table of Contents 1. The Facts on Mesothelioma a. Cause of Mesothelioma b. Symptoms of Mesothelioma c. Diagnosis of Mesothelioma d. Types of Mesothelioma e. Stages of Mesothelioma f. Mesothelioma Risk Factors g. Mesothelioma Life Expectancy 2. Mesothelioma Treatment a. Surgery b. Chemotherapy c. Radiation d. Mesothelioma Gene Therapy e. Mesothelioma Photodynamic Therapy 3. Asbestos Exposure a. Occupational Exposure b. Non-Occupational Exposure 4. Veterans a. Navy Veterans and Mesothelioma b. Army Veterans and Mesothelioma c. Marines Veterans and Mesothelioma d. Air Force Veterans and Mesothelioma e. V.A. Benefits for Mesothelioma 5. Nutrition and Mesothelioma a. Mesothelioma Treatment and Eating Problems b. Preparing to Eat Well during Treatment c. How to Manage Eating Problems during Cancer Treatment d. Sensory Changes Caused by Therapy Can Affect Your Eating Habits 6. Mesothelioma Lawsuits 7. Frequently Asked Questions about Mesothelioma 8. A Glossary of Terms

4 Chapter 1: The Facts about Mesothelioma Mesothelioma is a rare cancer that is caused mainly by exposure to asbestos. It is the rarest but also the most dangerous disease related to asbestos exposure, and up to 3,000 Americans face a mesothelioma diagnosis every year. The Cause of Mesothelioma Exposure to asbestos is the main cause of mesothelioma. Asbestos is a mineral commonly used as an insulator and binding agent in industrial, commercial, and residential products and equipment. Though the dangers of asbestos exposure and the resulting asbestos-related diseases like asbestosis have been documented for more than a century, products containing asbestos were in common usage until the early 1980s and can be found in many homes and structures today. More than 80 percent of mesothelioma and asbestosis patients were exposed to asbestos on the job. This occupational exposure to asbestos, when industry clearly knew of the dangers associated with the material, has been the basis for thousands of lawsuits. Symptoms of Mesothelioma The most common form of mesothelioma cancer is pleural mesothelioma, which affects the lining of the lungs. Symptoms of pleural mesothelioma are often compared to symptoms of the flu or a common cold. These include: Shortness of breath Chest pain or lower back pain Persistent, dry cough Difficulty swallowing Fever Fatigue Other forms of mesothelioma affect the abdominal area (peritoneal mesothelioma) and the heart (pericardial mesothelioma).

5 Diagnosis of Mesothelioma Mesothelioma has an unusually long latency period, which means that patients may not be diagnosed with the disease for as long as 5 decades after they were last exposed to asbestos. After careful evaluation, a variety of tests are necessary to correctly diagnose mesothelioma. Some of these clinical and radiological tests include a complete physical examination, including the patient s medical history and history of asbestos exposure, x-rays, lung function tests, CT scan, MRI, and sometimes a tissue or fluid biopsy. The Types of Mesothelioma Mesothelioma can affect different parts of the body. There are four types of mesothelioma: Pleural mesothelioma, which affects the lungs, is the most common form of the disease. Roughly 75 percent of mesothelioma patients have pleural mesothelioma. Peritoneal mesothelioma, which affects about 20 to 30 percent of mesothelioma cancer patients, is concentrated in the abdominal area. Pericardial mesothelioma attacks the cells of the lining of the heart, known as the pericardium. Only about 5 percent of mesothelioma patients have pericardial mesothelioma. Testicular mesothelioma (a form of peritoneal mesothelioma) is by far the rarest form of the disease, affecting fewer than 100 patients in the last 20 years. The Stages of Mesothelioma In terms of cancer, staging is a prognostic tool used to determine how far a particular cancer has spread, which can aid doctors in determining life expectancy and treatment plans. Mesothelioma cancer doctors have established a number of different staging systems for pleural mesothelioma, which is the most common form of this rare disease. There is currently no formal staging system for the other forms of mesothelioma.

6 Mesothelioma Staging Systems There are currently three main staging systems used by doctors to determine how far a patient s mesothelioma has progressed. Each system uses 4 stages to describe the progression of a particular case, but the definitions of the stages vary slightly according to the method used. Butchart Staging System The Butchart System is the most widely recognized and most commonly used mesothelioma staging system. This system is based on tumor size, dividing malignant mesothelioma into four stages. Stage 1: The mesothelioma has affected the right or left side of the pleural lining and may be seen in the diaphragm. Stage 2: Both sides of the lungs show the presence of malignant mesothelioma, as do the lymph nodes. In Stage 2, the disease may also have spread to the heart, stomach, or esophagus. Stage 3: In Stage 3, the mesothelioma has reached the peritoneum (abdominal cavity), as well as lymph nodes past the chest. Stage 4: This is the most severe stage of malignant mesothelioma cancer. Here, the cancer has entered the blood stream and spread to additional organs. TNM Staging System The TNM System was developed by the American Joint Committee on Cancer, and is very similar to staging systems used to measure other types of cancer. This system weighs not only the condition of tumors, but also the effect of mesothelioma on the lymph nodes and whether the cancer has spread (metastasized) to other parts of the body.

7 Stage 1: In Stage 1 of the TNM System, the malignant mesothelioma is in either the right or the left pleura. It may have also spread to one lung, the heart, or the diaphragm on the same side. Stage 2: In Stage 2, the mesothelioma has reached a lymph node on the same side of the lungs affected by the cancer. It has also spread to the lung on the same side as the tumor, or to the heart or diaphragm. Stage 3: Here, the mesothelioma has entered the abdominal cavity and lymph nodes beyond the chest. Stage 4: In this stage, the mesothelioma has spread throughout the pleural area as well as to the lymph nodes on both sides of the body. The cancer may also have reached additional organs or the abdomen at this stage. Brigham Staging System The Brigham System is the most modern mesothelioma staging system. Unlike the Butchart and the TNM Systems the Brigham system also assesses the proposed effectiveness of surgical intervention at each stage. Stage 1: The mesothelioma tumor is still removable and lymph nodes are unaffected by the cancer. Stage 2: In this stage, the lymph nodes are now affected but it is still possible to remove the cancer surgically. Stage 3: In Stage 3, the tumor is not removable and the mesothelioma has reached the heart, chest cavity, abdominal cavity, or the diaphragm. Stage 4: Here, the malignant mesothelioma is no longer removable through surgery, as it has spread (metastasized) throughout the body.

8 The Treatment of Mesothelioma by Stage Unfortunately, a person can end his or her asbestos exposure and develop the disease years before mesothelioma symptoms appear, so diagnosis commonly occurs in the latest stages of mesothelioma. If you or someone you love has been repeatedly exposed to asbestos, you should make this known to your doctor immediately so that he or she can closely monitor the health of your lungs. This may aid in early detection of mesothelioma, which can dramatically improve the prognosis. Asbestos Exposure and the Development of Mesothelioma The biggest mesothelioma risk factor is exposure, particularly in the workplace, to the silicate mineral asbestos either by inhaling or ingesting airborne particles. Most exposure is direct exposure, i.e., the individual exposed worked around or handled asbestos regularly. Some exposure, however, is indirect (known as secondary exposure), as in cases of family members of people who worked with asbestos and carried it home on their hair, skin, and clothing. Other Mesothelioma Risk Factors According to the Mayo Clinic, the following factors may also increase your risk for mesothelioma: Living with someone who works with asbestos. People who are exposed to asbestos may carry the fibers home on their skin and clothing. These stray fibers can put others in the home at risk of mesothelioma. People who work with asbestos should shower and change clothes before leaving work. Radiation. Some research links mesothelioma to the radioactive substance thorium dioxide, which was used along with X-rays to diagnose various health conditions from the 1920s to the 1950s. Mesothelioma has also been linked to radiation therapy treatments to the chest, such as those used to treat breast cancer or lymphoma. Family history. A family history of mesothelioma may increase your risk of mesothelioma, but more research is needed to understand this theory.

9 What is the Life Expectancy for Mesothelioma Patients? Although no one can calculate how long an individual s life expectancy is, there are some general observations based on percentages of patients. Currently, the average life expectancy for mesothelioma patients after diagnosis is between six to eighteen months. The currently available therapies do impact life expectancy in some patients depending on the stage of the cancer at diagnosis. Some patients who undergo aggressive therapy that includes surgery, chemotherapy and radiation experience a longer than average life expectancy. However, the majority of patients die from respiratory failure caused by the tumor extending beyond the pleura, small bowel obstruction caused by a tumor in the abdominal cavity extending below the diaphragm, and heart failure or irregular heart beat caused by a tumor in the sac surrounding the heart extending into the heart muscle. But keep in mind that new techniques are being developed that can diagnose the disease at an early stage and treat it more aggressively than current therapeutic agents. This will ultimately increase life expectancy. New Ways to Predict Life Expectancy are Being Found Research published in the January 2009 edition of the International Archives of Occupational and Environmental Health suggests that the decrease in lung function that occurs as a result of asbestos-related disease is a better indicator of life expectancy than exposure history. Consequently, individuals with known asbestos exposure should be given primary screenings with a spirometer, which measures the amount of air that is inhaled and exhaled. Chapter 2: Mesothelioma Treatment Options Many patients opt to undergo one or more mesothelioma treatments to combat the disease and to ease the physical symptoms of mesothelioma cancer. Not all treatments listed in this chapter are appropriate for every mesothelioma patient. The best way to determine the course of your own treatment is to consult with your own doctors. Understanding their recommendations can help you and your family make the best

10 possible choices, however, so researching your options may be beneficial in the long term. Mesothelioma Surgery There are a number of surgical procedures that may offer hope or have a palliative effect for mesothelioma patients. Thoracentesis is a minimally invasive procedure during which a needle is inserted into the chest cavity to drain excess fluid and provide relief to the patient suffering from pleural mesothelioma. In some cases, antibiotics or talcum powder may also be injected into the chest at this time. In patients with peritoneal mesothelioma, a similar procedure may be performed to drain the abdomen. Similarly, a needle may be inserted into the area around the heart to drain fluid that is a result of pericardial mesothelioma. In rare cases, when the patient s mesothelioma is at an early stage, curative surgery known as pleurectomy may be performed to remove pleura (the lining of the lungs), thus removing the cancerous tumor, as well. Unfortunately, in many cases microscopic cancer cells have already spread, so this procedure is not an effective cure to mesothelioma. In cases of localized (early stage) mesothelioma of the pleura, extrapleural pneumonectomy is a very extensive surgery that may be offered. This operation is only performed by a select few doctors, as it involves the removal of portions of the lung, pericardium, and diaphragm on the affected side of the body in order to remove a tumor without dissecting it. A surgical option for patients with peritoneal mesothelioma is known as a peritonectomy. This procedure can only be performed at very early stages of the cancer, and involves the removal of a portion or all of the peritoneum to rid the body of cancerous tissues. As with most cancer surgeries, patients who undergo mesothelioma surgery may also be treated with chemotherapy and radiation.

11 Mesothelioma Chemotherapy Chemotherapy usually involves the intravenous administration of drugs designed to interfere with the processes that occur during cell division, thereby killing rapidlydividing cancer cells. Depending on the stage of a patient s mesothelioma, chemotherapy may be given as the primary treatment or in conjunction with other treatments such as surgery or radiation therapy. While chemotherapy drugs kill cancer cells, they also kill or damage some normal cells. Thus, careful attention must be paid to maximize the effectiveness of the treatment while minimizing the side effects. Mesothelioma Radiation Radiation therapy is a form of mesothelioma treatment that is usually given in conjunction with other treatments such as chemotherapy and surgery. Radiation works by using beams of intense energy like X-rays to kill cancer cells. There are 2 types of radiation therapies that have proven effective in mesothelioma cancer patients: external beam radiation and brachytherapy. External beam radiation works by bombarding cancer tumors with X-rays to kill cancer cells. Brachytherapy is a newer radiation treatment that involves the implantation of radioactive material directly into tumors to provide a stronger dose of radiation while doing very little damage to surrounding healthy tissue. In some cases, radiation therapy is the main form of mesothelioma treatment. This is more common in patients whose overall health has declined to a state where they are too weak to endure chemotherapy or invasive surgery. In other cases, such as a follow-up to mesothelioma surgery, radiation therapy is used as a complementary treatment. Radiation is also used as a palliative therapy to relieve mesothelioma symptoms such as pain, difficulty swallowing, shortness of breath, and bleeding. As with chemotherapy, radiation therapy damages healthy, normal cells as well as cancerous cells.

12 Mesothelioma Gene Therapy Mesothelioma gene therapy is a newer treatment used in conjunction with chemotherapy. The type of gene therapy used for mesothelioma patients is often referred to as suicide gene therapy because it forces cancer cells to cause their own death. In essence, genes are introduced into the body that render cancer genes defense mechanisms useless and thus make them more susceptible to cancer medications issued through chemotherapy. Mesothelioma Photodynamic Therapy Photodynamic therapy is commonly used to treat skin cancers, some types of lung cancers, and pleural mesothelioma. This therapy involves the use of light energy to eliminate cancer cells. The patient is given an I.V. solution of medication designed to make cancer cells highly sensitive to a specific kind of light. A few days after administration of this medicine, the patient is exposed to this specific kind of light, killing the medicated cancer cells. Photodynamic therapy is only effective in localized mesothelioma, and is unsuitable for patients with other types of mesothelioma. In addition to surgical and oncological treatment options, many mesothelioma patients choose to investigate less common or alternative forms of treatment, such as immunotherapy, physical therapy, or natural remedies. Additionally, a percentage of mesothelioma patients will participate in clinical trials that give them access to the newest possible treatments. Learn more at

13 Chapter 3: Asbestos Exposure There are two main types of asbestos exposure, occupational and non-occupational. The former is much more commonly associated with mesothelioma than the latter, but there have been cases of family members of workers exposed to asbestos developing the disease. Occupational Asbestos was widely used commercially from the late 1870s to the mid-1960s. The medical community first determined that asbestos had a harmful effect on human health in the 1930s when an association between occupational exposure to asbestos and the development of asbestosis was established. Later on in the 1950s, scientists found that asbestos was a risk factor for lung-related cancers, including mesothelioma. Many American Workers Have Been Exposed to Asbestos Worker exposure to asbestos started to significantly increase in the early 1940s, and researchers estimate that millions of Americans came in contact with asbestos during the course of their employment. There are some industries whose workers have a history of long-term exposure to high levels of asbestos, such as miners and millers of asbestos, workers involved in the production of textiles containing asbestos, or other asbestos products, and construction workers who installed insulation made from asbestos, or who were involved in the demolition of buildings containing asbestos materials like drywall. Even auto mechanics may have been exposed while repairing brakes with linings made from asbestos. The following professions are those most often affected: Electricians Power Plants Oil Refineries Shipyard Workers Boilermakers HVAC Workers Machinists Pipefitters Contractors Navy Engine Room Workers

14 Many members of the military were also occupationally exposed to asbestos, especially those serving in the Navy. Asbestos-containing insulation was commonly used in Navy ships until the early 1980s, which meant that civilian workers in shipyards were also exposed. Governmental Agencies Intervene to Regulate Asbestos Exposure The Environmental Protection Agency (EPA) issued a ban in 1989 on all new uses of asbestos; however, uses that were already in existence were permitted to continue. The Occupational Safety and Health Administration (OSHA) established regulations controlling the level of asbestos exposure for construction, shipyards, and general industry. The agency s current acceptable asbestos exposure limit for the workplace is 0.1 fibers per milliliter. In addition, OSHA created standards regarding the use of protective equipment like respirators and specific workplace practices and safety procedures. Non-Occupational Exposure Although mesothelioma results primarily from occupational exposure, there are instances of patients developing the disease even though they weren t employed in jobs that exposed them to asbestos. Levels of asbestos fibers are always present in the ambient air that is the air that is all around us that we normally breathe. Some studies have shown that on average, the level of asbestos fibers can be as high as fibers per cubic centimeter in urban areas. Fiber levels tend to be lower in the suburbs, generally between to fibers per cubic centimeter. Studying Non-Occupational Exposure and Research It is just as important to study non-occupational exposure to asbestos as it is to study worker exposure because mesothelioma cases that result from non-occupational exposure actually give researchers a clearer picture of what amount of fibers produces a response, meaning development of the disease. That s because work exposureinduced mesothelioma develops when the patient is an adult and has been around an especially high concentration of fibers. Also, the majority of these workers are male. In

15 order for researchers to understand how the disease affects both sexes and at what exposure level, they have to study non-work related cases of mesothelioma. Scientists are very interested in observing what happens when individuals are exposed to natural sources of asbestos because the exposure can start during childhood and continue throughout the person s lifetime, and it can occur 24 hours a day, seven days a week. The evidence that results from these observations provides data about the way in which early exposure affects cancer risk, how both sexes are affected by exposure, and whether or not different types of asbestos fibers have different effects on individuals. How are Individuals Non-Occupationally Exposed to Asbestos? There are a number of ways an individual can be exposed to air that contains asbestos fibers: Mining Mine workers aren t the only ones exposed to asbestos fibers. People who live near mining or manufacturing locations that are associated with material that contains tremolite asbestos may be exposed to high levels of asbestos in the air they breathe. Building Materials There are a number of different types of building materials, such as insulation, ceiling or floor tiles, and cement pipes that contain amphibole asbestos. Many buildings constructed before 1981 are assumed to have been built using these asbestos containing materials. Homeowners that do maintenance, repair, or remodeling work on houses containing these products have the possibility of being exposed to high amphibole levels. The exposure occurs when the asbestos-containing materials are moved, causing them to release fibers into the air. If the materials remain untouched, the exposure level is minimal. Gardening Supplies The majority of the vermiculite supply came from Libby, Montana, which had a natural deposit of asbestos. This meant that the vermiculite was contaminated with asbestos. The contaminated vermiculite that was sold in gardening supply stores was used to improve the quality of soil or as a fertilizer carrier. It was also a component in potting soil mixtures. The Libby

16 mine closed in 1990, so the current vermiculite supply is assumed not to be contaminated.

17 Chapter 4: Veterans The U.S. Department of Veterans Affairs states that there are more than 25 million living veterans of the U.S. Armed Forces. Unfortunately, military veterans comprise one of the highest risk groups for asbestos exposure and mesothelioma in the United States. It is estimated that many thousands of living American veterans were exposed to asbestos during their tours of duty. Asbestos is a naturally-occurring mineral that is valued for its insulation and heat resistance properties. As such, it was widely used by every military branch, mostly for insulation purposes in ships, planes, vehicles, buildings, and military housing. Navy Veterans and Mesothelioma U.S. Navy Veterans and shipyard workers are among the highest risk group for developing mesothelioma and other asbestos-related diseases like asbestosis. The reason for this is that, between the 1930s and the 1970s, every ship and shipyard constructed by the U.S. Navy was built with the use of a number of asbestoscontaining materials. In fact, the use of asbestos was so effective for the Navy that it was actually mandated to be used before it was gradually phased out. The most common use of asbestos in U.S. Navy ships was in the boiler rooms, engine rooms, and other areas below deck where insulation and fireproofing were needed. For this reason, veterans who worked below deck on a Navy ship suffered repeated and prolonged asbestos exposure. Below-decks staff weren't the only sailors exposed to asbestos, however: asbestos was also used in mess halls, sleeping quarters, and navigation rooms of all ships, as well as in the flooring, pipe coverings, brakes, cements, adhesives, gaskets, and valves on every Navy ship. This means that there was a high probability of every sailor on a ship inhaling or ingesting asbestos at some time. Army Veterans and Mesothelioma Asbestos is relatively cheap and very plentiful, so it was used in the construction of buildings on Army bases all over the United States and overseas. Unfortunately, as these buildings aged, the asbestos used in their construction weakened and often became airborne, leading to the inhalation and swallowing of asbestos fibers by millions of Army veterans and their dependents.

18 Marines Veterans and Mesothelioma The Navy and the Marines of the United States have historically worked together, especially in times of war. Many U.S. Marines serve or have served on Navy ships, thus facing the same threats of asbestos exposure as Navy veterans. Marines have also been exposed to asbestos that was used in the construction of older base buildings or camps. Air Force Veterans and Mesothelioma From the 1930s to the 1970s, many U.S. Air Force planes were constructed with parts containing asbestos, such as engine, brakes, and other parts that needed to be insulated from the extreme heat of a jet engine. Pilots, mechanics, and other personnel who worked on or with these planes have all been exposed to asbestos through the inhalation of asbestos dust. Asbestos was also used in the base buildings and military housing used by Air Force service members and their families. VA Benefits for Mesothelioma The U.S. Department of Veteran Affairs now recognizes mesothelioma and other asbestos-related diseases as service-related medical conditions. This means that veterans with mesothelioma are able to apply for Veteran Affairs (VA) benefits to pay for their treatment. The application process for VA benefits is arduous, and some veterans who have mesothelioma or another asbestos-related disease find that their claims are denied. If you are a U.S. Armed Forces veteran who has been diagnosed with mesothelioma, a veterans' mesothelioma lawyer from Shrader & Associates, LLP can help you with the VA benefits claims process and can guide you through the process of recovering compensation for your military occupational exposure to asbestos.

19 Chapter 5: Nutrition and Mesothelioma A healthy, nutritious diet is important for everybody, but people who are fighting cancer such as mesothelioma often have special dietary needs. When people have cancer, it is important to eat foods that will help them keep up their strength and fight infection during treatment. This can become a challenge when certain cancer treatments lead to the development of eating problems in some patients. Mesothelioma Treatment and Eating Problems A person never knows how cancer treatment will affect his or her eating habits until he or she begins that treatment. Many patients have no trouble with eating healthy during mesothelioma treatment, while others may experience some of the following treatment side effects that may make eating a struggle: Dry mouth and mouth sores Nausea and vomiting Constipation or diarrhea Inability to properly digest foods and absorb all nutrients Loss of appetite Preparing to Eat Well during Treatment Fighting mesothelioma is just that: a fight. When a person is undergoing cancer treatment, it is crucial that he fortifies his body with the right foods in order to stay strong and fend off infection. Unfortunately, many cancer treatments make eating difficult for patients, and malnutrition is very common amongst mesothelioma cancer patients. Before beginning cancer treatment, it s a good idea to prepare for eating well by taking the following steps: Stock up. Fill your home with healthy foods that you can eat even when you aren t feeling your best. Also purchase foods that are easy to prepare, such as frozen meals, for when you may not feel well enough to cook. Many patients also prepare meals ahead then freeze them for later use. Talk to your doctor about your current nutritional habits to learn whether there are some changes you need to make before beginning treatment. Your doctor may be able to refer you to a dietician, and you may be able to get a list of foods that other cancer patients have found helpful or appealing during treatment.

20 Build your community of care. Speak with friends and family members about your treatment and how the side effects may affect your nutrition. Perhaps a friend can do your shopping or bring meals a few times a week. How to Manage Eating Problems during Cancer Treatment During cancer treatment, many patients have good food days and bad days. By preparing yourself and your pantry for this possibility, you may make it easier to find foods that you can tolerate during those more difficult days. Here are some other tips to help you keep your body fueled during cancer treatment: Some days, you may not be able to eat at all. This is normal. If you can t eat for more than 2 days, however, you need to let your doctor know. When you can t eat, try to focus on other ways you can make yourself feel better. Eating lots of protein and calories will should strengthen your body and help to rebuild tissues damaged by cancer treatment It is very important to keep drinking lots of liquids, especially on those days when you are unable to eat. Many patients find it easier to stay hydrated when they keep a water bottle near them at all times. On those more difficult days, eat whatever you can. Liquid meal replacements are often an easier way for patients to get some food into their bodies. Even if you just eat a small snack, it is important to eat whenever you are able to. Sensory Changes Caused by Therapy Can Affect Your Eating Habits Maintaining good nutrition for mesothelioma patients undergoing radiation or chemotherapy is a complex issue that needs to be addressed from several different perspectives. While it is common knowledge that good nutrition is important to help patients withstand the rigors of treatment, it is difficult for many to do so because of the effect these treatments have the sense of taste and smell. In a study titled Taste and Odor Abnormalities in Cancer Patients published in the March/April 2009 edition of the Journal of Supportive Oncology, researchers reviewed a variety of existing studies that examined changes to taste and smell in patients receiving cancer treatments. They observed that problems with taste and smell are daily concerns for these patients that can affect their quality of life and possibly lead to malnutrition, or the onset of other medical conditions.

21 The most common problem patients experience is changes to taste acuity, meaning the ability to differentiate between the four general tastes of sweetness, bitterness, sourness and saltiness. In some cases, sensitivity of taste is decreased, but many patients report an increased sensitivity, especially those receiving chemotherapy and radiation. Bitterness seems to be the taste most significantly affected by treatment. It is especially common in patients who have experienced weight loss. The findings from some studies reviewed by these researchers suggest that an increased sensitivity to bitterness can lead to a loss of appetite, which could possibly lead to malnutrition. Another change in sense perception is taste quality. This usually manifests as a metallic aftertaste, most closely associated with eating red meat. The reason for this is believed to be the high amount of iron compounds in red meat, such as hemoglobin. The researchers noted that studies indicated that 77 percent of patients undergoing chemotherapy with cisplatin alone, the standard of treatment for mesothelioma patients, or cisplatin combined with other chemotherapeutic drugs reported experiencing this metallic aftertaste. Changes in the way food smells is another side effect of both radiation and chemotherapy. Aromas of foods the patient once enjoyed can now be unpleasant or offensive, causing them to avoid them. Avoiding foods can also be the result of an association with nausea or vomiting while undergoing treatment. The researchers reported that this type of food aversion happens to 30 to 55 percent of patients who receive chemotherapy and radiation. It can lead to poor nutrition because the patient does not vary the foods consumed and in the extreme cases, malnutrition. So what can be done to help eliminate some of the problems associated with taste and smell disorders? Researchers suggested that when preparing foods for a mesothelioma patient, you should avoid foods that have been shown to be poorly tolerated, such as red meat, vegetables, caffeinated drinks, chocolate, and foods high in fat content. Instead, use foods like chicken, fish, eggs, and cheese. These foods are high in protein but have mild flavors that are well tolerated.

22 Here are some other recommendations they made to help encourage the patient to eat: Avoid using metallic silverware to decrease the risk of a metallic aftertaste Add seasonings and spice to enhance flavors, especially in patients with a decreased sensitivity to taste or smell Serve foods at cold temperatures to reduce unpleasant flavors or aromas Be sure the patient practices good oral hygiene by frequently brushing their teeth and rinsing with mouthwash to remove any carryover unpleasant tastes Encourage the patient to chew sugar-free gum or suck on sour-tasting hard candy, which stimulate saliva secretion, increasing taste perception

23 Chapter 6: Mesothelioma Lawsuits Do I need a lawyer? It has long been known across industries that asbestos was dangerous and the root cause of various illnesses. A claim cannot undo the damage that negligent companies did when they exposed unprotected workers to the dangers of asbestos, but pursuing and winning a lawsuit can give you and your family peace of mind. They will be taken care of, no matter how mesothelioma impacts your life from this point forward. Why do I need a mesothelioma lawyer? A mesothelioma lawyer is one who has understands this disease and its occupational origins. It's an area of law that requires a vast amount of knowledge about the uses of asbestos across industries, the types of products that contained asbestos, the science behind exposure, and the science behind the development of mesothelioma cancer. Most non-specialized lawyers are not going to be familiar with the past 40 to 50 years of asbestos litigation in this country. A mesothelioma lawyer is going to understand the specifics and be able to put you in the best possible position to successfully argue your case. When do I need to file a mesothelioma lawsuit? There's a statute of limitations in every state that dictates when a claim needs to be filed to be valid. Some states have a one year statute of limitations, some states two years, and some states can go up to four, five, and six years. It also depends on where you lived when you were diagnosed and where you were exposed to asbestos. A lawyer can help you understand the statute of limitations in your case. If the victim is still living, it runs from the date that asbestos exposure is associated with the mesothelioma cancer. Most state statutes state that if the victim passed away the limit on lawsuits is one or two years from the date of death. Most of the time, the statute of limitations is two years from the date of diagnosis and most often, it's one to two years from the date of death. What if I can't afford an attorney? In these types of lawsuits, most attorneys work on what is called a contingency fee basis, meaning that you never actually have to pay your attorney until a settlement or a

24 verdict is reached or money has been recovered in your case. Lawyers are expensive. A defense lawyer, for example costs $300 to $600 an hour and most plaintiffs can't possibly afford that number up front. When an attorney is working on a contingency fee basis, their fee comes out of whatever money is recovered in the case. I filed and received compensation for an asbestos lawsuit now that I have mesothelioma can I file suit again? Generally speaking, the answer is yes. Most states have what they call a two disease rule, meaning that you can file once for a non-malignant form of asbestos disease such as pleural plaques or asbestosis. Then you can sue again if you develop lung cancer or mesothelioma. It should be noted, however, that if you did file a case years ago for asbestosis and then later developed mesothelioma, the defendants in the mesothelioma case will have a credit if they already have already paid out money. The initial settlement or damages will be discounted from whatever the defendant is ordered to pay in the second case. What role do I need to fill in a mesothelioma lawsuit? If the plaintiff is the person with mesothelioma, they are the most critical witness in their case. Only the person suffering from the disease the person who actually worked with asbestos will know the minute details of how, when, and where exposure occurred. If this is you, then your job is to be your own advocate. You need to share everything you can remember with your attorney so he or she can mount a thorough case. In cases where the plaintiff is a loved one of a mesothelioma patient, he or she must fulfill this role. Will I have to go to trial? Most mesothelioma cases do not go to trial. They reach a settlement or a plea bargain. If a reasonable settlement offer is made, it is up to the plaintiff to decide whether or not to proceed with a trial. Even in cases where the defendant implies they will not pay, a settlement is usually the outcome. What if I pass away before my claim is settled? If you have mesothelioma and pass away before a settlement is reached, the claim is treated as if it was a piece of property, similar to a house or a car. If you have a will,

25 that will dictate who receives the claim. If you do not have a will, your states "intestate succession laws" will determine who owns the claim. Additionally, most states have a wrongful death statute that allows the surviving spouse and the surviving children to continue the case in their own names. So if you were to pass away before your claim is settled or before it goes to trial, your successors step into your shoes and continue the case. If the company responsible for my asbestos exposure has filed for bankruptcy, does that mean I can't recover compensation in a mesothelioma lawsuit? Most companies that have gone bankrupt through asbestos litigation have established bankruptcy trust funds against which asbestos victims can file claims. There are two types of defendants in these kinds of cases: those which are solvent (which can still be sued in a court system) and those which are bankrupt (and cannot be sued). Bankrupt companies have a claims process and your attorney will file your claim with that trust. The only difference in the two scenarios is the bankrupt defendants have a set amount that they can actually pay on a claim, which was determined previously by a bankruptcy court judge. What kind of compensation can victims recover in mesothelioma or asbestos lawsuits? That number varies significantly based on various factors. In an asbestos case, the more companies you can identify that exposed you to asbestos, the greater the value the potential claim holds. Factors also include the victim s age, employment status, spouse, and number of children. These factors are evaluated by a jury. How much will I be involved and about how long will the legal process take? An asbestos lawsuit client can be as involved in their as they want to be, but the preliminary element of every case involves recalling past experiences to uncover asbestos exposure. The initial work from the client is much higher at the beginning than it is at the end. At the start of a case, the victim or their family shares history, gathers old files and pictures, and contacts former coworkers. After it is determined who the lawsuit will be filled against, there is not a lot the client must do. A lawyer will handle filing the pleadings, arguing discovery, taking depositions, and reviewing documents. If I was exposed to asbestos while serving in the Navy, will I need to sue the Navy for compensation?

26 It's actually impossible to sue the Navy except in very special circumstances. The federal government, like most state governments, has sovereign immunity, meaning that they don't allow you to file suit against them. In a situation where somebody was exposed to asbestos in the Navy, lawsuits are typically filed against the companies that manufactured the various asbestos-containing ship parts. The preliminary phase of a lawsuit involves figuring out which products were used on the ship or Naval base. If I have mesothelioma can I receive worker's compensation or disability benefits? Yes, you can. Worker's Compensation and disability benefits are separate claims that don't involve the court system and are dictated by state or federal law. Worker's Compensation, which is designed to compensate workers who cannot work, involves seeking compensation from the insurance company employed by your company. Retired workers are not usually involved in these types of cases because they're not actively trying to work. Likewise, when it comes to filing for disability, most people who are diagnosed with mesothelioma are of retirement age and therefore utilizing Social Security benefits or Medicare. Some people diagnosed with mesothelioma are of working age, however, and these individuals can file for the appropriate benefits. Is there anything specific I should be looking for in a law firm? You need to ask the right questions when interviewing potential lawyers. First, you need to know whether a law firm is going to litigate your case individually or if they plan to file a class action suit. Look for smaller law firms that will treat you like an individual. Can you get ahold of a lawyer not a paralegal when you need one? Is the firm attentive to your needs and willing to travel to your location? Does it feel like the firm will be a part of your advocacy team?

27 Chapter 7: Frequently Asked Questions What is mesothelioma? Mesothelioma is a very rare cancer that can affect the linings of the stomach, lungs, and heart. Every organ has a thin membrane around it, which protects it from the other organs, and mesothelioma is a cancer that develops in that lining. It is caused by exposure to asbestos. Is mesothelioma the same thing as lung cancer? No, actually it's not. Mesothelioma develops on the outside lining of the lung, whereas lung cancer generally develops inside the lung. There are different cell lines. They create different forms of cancer. People discuss mesothelioma as lung cancer mainly because of the close proximity to the lung. But it's two different forms of cancer, and the treatments available for lung cancer vs. mesothelioma are different. Does everyone exposed to asbestos develop mesothelioma? Absolutely not. It's a very rare cancer. It happens roughly 2,000 times a year in our country. There's no rhyme nor reason as to who gets it, but people who were exposed to more asbestos have a higher risk of developing the disease than people who were exposed to less. You can be exposed to asbestos, but it's extremely rare to develop mesothelioma. Is mesothelioma preventable? Mesothelioma is preventable in the sense that asbestos companies never should have used asbestos, thereby exposing millions of people to the deadly fiber. Mesothelioma is not preventable in the sense that it takes so long to develop. Mesothelioma has about a 40-year latency period. It was preventable from the company s end by not putting it into our environment, but it's not preventable on the worker s end for those already exposed to asbestos. Going forward, you don't want to be exposed to asbestos, but there's nothing you can do about past exposure. Is asbestos still used today?

28 Asbestos is still used if you look at the world market. It's still used in developing countries, and it's still being mined in certain places such as Canada. It is still used in specialty applications such as the aerospace industry when protection from extreme heat is a consideration. But in consumer applications in the US, it's not being used anymore. How do I know if there is asbestos in my home or workplace? The best way to determine if there is asbestos in your home or workplace is through research. Things that were built in the fifties, sixties, and even the seventies and eighties may contain certain amounts of asbestos. Asbestos can be found in dry wall, ceiling tiles, floor tiles, different types of cements, siding, or roofing shingles of homes or other structures. Newer products on the market today do not use asbestos, but if items were installed 30 or 40 years ago, there is a chance they may contain asbestos. It s best to assume that an old house might contain asbestos and to protect yourself from dust while doing home improvements or repairs. You shouldn t conduct any construction, even minor, unless you've tested to see if there's asbestos present. What are the symptoms of mesothelioma? Mesothelioma has a wide range of symptoms. Some of the first symptoms of mesothelioma are a dull pain in the back or the chest or difficulty breathing. Sometimes the body, when the cancer just starts to develop, will start to fill with fluids. Fluid puts pressure against the lungs and makes it very difficult to breathe. Some asbestos symptoms are similar to lung cancer symptoms, such as shortness of breath with either exertion or at rest, cold-like symptoms, and a deep cough. Anything along those lines can be a symptom of mesothelioma, which makes it very difficult to detect because it can be easily dismissed as simply a cold. If I have shortness of breath or trouble breathing, should I be concerned that I have mesothelioma? No. If you are suffering from shortness of breath, there are many things that might be keeping you from breathing correctly. One of the symptoms of mesothelioma is shortness of breath, but that s also a symptom of colds, pneumonia, and lung cancer. There are a number of afflictions that can cause shortness of breath. If you are experiencing this, you should consult your personal physician just as you would with anything else. When you speak with your physician and explain your symptoms, they're

29 going to know what to look for. If you were ever exposed to asbestos, you want to make sure that your doctors are aware of it so they can assess your risk of potentially developing mesothelioma. Can I have mesothelioma but show no symptoms? Yes. Mesothelioma is what we call a long latency period disease, meaning that it can take 20 to 40 years to develop. The exact molecular process controlling how and when a regular cell turns into a cancer cell is not completely known. The hypothesis is that an asbestos fiber makes contact with a cell, changes the DNA of that cell, and then that cell becomes active 20 to 40 years later. It's very difficult to detect mesothelioma until it has expanded and grown into Stage Four cancer. What is asbestosis, and can it progress into mesothelioma? Asbestosis is a non-malignant form of asbestos-related diseases. It's essentially a difficulty breathing related to asbestos in the lung tissue. When asbestos gets into the lung, it is not expelled and damages lung tissue, causing scarring and making it difficult to breathe. Lung capacity is reduced because scar tissue cannot expand and contract as readily as healthy lung tissue. Asbestosis itself does not progress into mesothelioma. These are two distinct forms of disease. But the fact that you have asbestosis proves that you were exposed to asbestos, and asbestos fibers are the root cause of mesothelioma. Is there a cure for mesothelioma? It depends on who you ask, but generally speaking, there is no cure for mesothelioma. The goal with mesothelioma is to treat the patient to slow the progression of the disease and improve quality of life. Doctors will attempt to stop the spread of the tumor, isolate it chemically or through oncology practices, and/or remove as much of it as possible and maintain a relatively small size of that tumor for the rest of the person's life. Remission, in the case of mesothelioma, means a tumor that is not growing or spreading. How is mesothelioma diagnosed? The first step in diagnosing mesothelioma is to talk to your personal physician. They are the ones who know your health and your body best. Generally speaking, if there's a

30 pain in your chest, your doctor will order a chest x-ray or a CT scan to identify any abnormalities inside the chest. If the doctor sees an area that they're concerned about, a pathologist will come in and do a biopsy to remove a small amount of tissue for analysis. Then the pathologist will look at those cells underneath the microscope. The pathologist is trained to look at the cells and determine what they are. A confirmed diagnosis of mesothelioma can only be made in this way. Can mesothelioma be misdiagnosed? Yes. The most common forms of misdiagnosis of mesothelioma involve flu-like or coldlike symptoms that are misdiagnosed as a cold, pneumonia, or a bacterial infection. Also, there are times when a biopsy is performed and the pathologist doesn't get the tumor (because the cancer has not spread to the biopsy site) and misdiagnoses the problem as something else. Mesothelioma is sometimes misdiagnosed as a different type of cancer. Mesothelioma is very rare and sometimes doctors are not familiar with it. There are only a handful of clinics in the country that specialize in the diagnosis and treatment of mesothelioma. Often, if you're in a small health care market, the pathologist will send your tissue to the Mayo Clinic, Sloan Kettering, or an MD Anderson type of facility to have experts make a more practiced analysis. Sometimes mesothelioma can go undiagnosed or misdiagnosed until a medical professional familiar with mesothelioma actually sees the tissue taken at a biopsy. When do I need to seek treatment? You want to seek the care of a physician because there are going to be treatment options available based on your age or your general overall health. There are ways to extend your life and to continue to lead a productive life. It s in your best interest to speak with a physician to discuss all the possible treatment options and therapies available to you. There are new mesothelioma treatments becoming available all the time, including new drugs, new therapies, and new procedures. You want to be part of that process because you will help further treatment research that will not only benefit you, but future mesothelioma sufferers as well. Do I need to see a specialized doctor for mesothelioma treatment? When you're diagnosed with mesothelioma, you will be referred to an oncologist. Oncologists are doctors who practice oncology, the branch of medicine that deals with cancer. Among the oncologists of the world there are some that specialize specifically