The Faces of Mesothelioma

For over 30 years, I have looked into the eyes of my clients who are suffering from mesothelioma and have seen pain, sadness, and despair that I cannot adequately describe.  The physical pain is excruciating as this cancer constricts breathing and movement as it envelopes the lungs or abdomen, and the treatment options bring even further discomfort.  The sadness in my clients’ eyes is a reflection of what they feel whenever they think of their family and the emotional toll this disease takes on all of them.  And the despair is the result of knowing that there presently is no cure for this cancer.

Mesothelioma through the Camera of Photojournalist Neil Hodge

But what my words fail to capture, photographs can.  I recently became acquainted (via Twitter) with Neil Hodge, a photojournalist from the United Kingdom who has focused his interest and camera on the faces of mesothelioma victims.  Neil has been documenting the lives of people affected by mesothelioma through photography and interviews for the past three years.  He has shared some of his photos with us that capture the suffering of mesothelioma patients.

I was very interested to learn how Neil began photographing mesothelioma patients and reached out to learn his story.  I asked him when and why he undertook to document the lives of mesothelioma victims.  Neil explained in his own words how he got started and some of the difficulties he faced:

For the past three years I have been documenting the lives of people affected by asbestos-related diseases through photography and interviews. I started my photo-documentary project on people suffering from mesothelioma in 2008, initially focusing on people based in the East Midlands of the United Kingdom – principally around the industrial cities of Nottingham, Leicester, Sheffield and Doncaster. My interest in asbestos-related diseases began largely when I worked as an insurance journalist reporting studies from the likes of Lloyd’s of London that the number of mesothelioma claims/deaths was likely to reach its peak by 2015-2020, and that asbestos-related injuries/pay-outs would then begin to decline. To me, this just never seemed credible: in the UK, the overwhelming majority of buildings still contain asbestos, and while there are regulations in place for employers to monitor whether the material is safe, enforcement is another issue. Therefore, as the material is still present, so is the danger.”

Neil also talked about the challenges and frustrations of trying to document the lives of those suffering from mesothelioma.  It is understandably often difficult for a family to appreciate the amount of access a photojournalist like Neil needs to really tell their stories:

“It was incredibly difficult – and still can be – to photograph people receiving treatment, or to take pictures of them when they are unwell. While sufferers’ families have always supported my work in terms of publicizing that asbestos is still a real danger, they have not always understood how a photojournalist needs to operate and the amount of access I must have to tell the story – that I need to take pictures when people are having surgery, are not feeling well, and are dying. It’s not an easy point to make to relatives who have been told that their father/husband is likely to have just six months to live, and a lot of chemotherapy, radiotherapy, and surgery in between.”

Continuing to Spread Word of Dangers of Asbestos

Neil is continuing to document mesothelioma patients in the United Kingdom, but he has also turned his attention to the use of asbestos in developing countries like India to raise the awareness of the future disease that will result from the use of this deadly material.  I will write more about that in my next article, but for now I want to thank Neil for sharing his photographs with us so we could put faces on this tragedy.  To see more of Neil’s work, you can visit his website at http://www.neilhodge.co.uk or follow him on Twitter @neilhodgephoto.

Support for the Mesothelioma Caregiver

“There are only four kinds of people in the world: Those who have been caregivers; those who are currently caregivers; those who will be caregivers; and those who will need caregivers.” – Rosalynn Carter 

Mesothelioma is a devastating cancer that affects the whole family and not just the patient.  The caregivers for mesothelioma patients play a critical role.  For many of my clients, their main caregiver is their spouse.  But I also have had many clients who are widowed or never-married or divorced.  For them, a child, a brother or sister, or a niece or nephew usually steps in and takes the primary support role.  

Since the job of caretaker is such an important one, I want to offer some insights I have gained over the past 30 years that may help caregivers navigate this difficult job.  So this advice is directed to all you caregivers who do all you can day in and day out to support your loved one who is facing a cancer for which there is no cure.

Caregiver Truth #1: There is No Training Manual

The truth is there’s no training for how to be a cancer patient’s caregiver.  No one tells you how to perform so many roles all at once: advocate, note-taker, cheerleader, researcher, insurance specialist, financial planner, pain expert, cook and hand-holder.  No wonder studies show caretaking can be a 40-hour-a week job – and sometimes more.

Today, the numbers of families affected are overwhelming.  The American Cancer Society reports 1.4 million people in the United States will receive a cancer diagnosis each year – some 3,000 of them for mesothelioma – which means somewhere in the US, 1.4 million people like you become primary caretakers each year.  This new job is not only filled with worry about your loved-one but also it’s a vivid reminder that all of our lives are fragile and, in the end, way too short.

Caregiver Truth #2: Caregiving is an Exhausting and Difficult Job

I’m betting by the time you read these words, you have already learned Caregiver Truth #2: Just because it’s a labor of love, doesn’t mean being a caretaker it’s easy. It isn’t.  Even the job description can be daunting:

  1. Reading everything you can get your hands on about mesothelioma, its treatments and their side-effects
  2. Navigating the healthcare and insurance systems (in the beginning this can seem like a full-time job all by itself)
  3. Helping find the right doctor and hospital and working with the medical team
  4. Setting up doctor’s office appointments
  5. Taking care of the details of hospitalizations
  6. Arranging for home healthcare
  7. Keeping up-to-date as chief note-taker
  8. Being your loved-one’s advocate in the system
  9. Keeping track of the medicine schedule and pain and nausea levels
  10. Making sure your loved one has company and privacy as needed
  11. Learning about and getting your financial affairs in order
  12. Understanding your legal options
  13. Making sure you are both eating healthfully and getting exercise
  14. Coordinating the help of family and friends
  15. Keeping upbeat!

While you need to keep as positive an attitude as possible to help your loved one, recognize that what you are undertaking is physically and emotionally demanding.  There may be days where you feel completely overwhelmed by the situation.  This is normal and natural and doesn’t mean you care for your loved one any less.  But you too are only human and need to acknowledge the stress this role of caregiver places on you.

Caregiver Truth #3:  No Two Family Members React the Same

But you are not alone in all this. Caregiver Truth #3: Cancer affects the entire family, and, from what I’ve seen, no two people react the same to the situation.  From the time your kids (and even more complicated, your step-kids) hear the news, some will want to jump in with everything they have to give (their time, their hard work, their car, their money) and others will shy away from even discussing it much less getting involved in the care.

I always say mesothelioma can bring out the best and the worst in a person, a couple and a family.  In the very best case scenario, working together to support the loved one can be the perfect chance to heal long-time family rifts.  But don’t expect these miracles to happen overnight.  Try not to judge them but do encourage each one to give what he or she can: Their time to help out around the house, their research skills, visits to play cards and share a few laughs or even their money.  

The main advice I give for dealing with younger family members is not to keep your loved one’s condition a secret.  Older children and teens can understand more than you may give them credit for about the disease, down to its probable cause.  And even the youngest child can understand that Grandpa or Grandma is feeling sick right now and they need to be a little more quiet than usual and not jump on them.  A quiet book to read together or a shared meal and a talk about their school day may be all that is needed to put the child at ease.  Afterwards, you will want to honor their questions and not squelch their fears or their tears.  After all, they’re not all that different from how you are feeling too.  Many children and teens act out when a family member gets a cancer diagnosis.  So it’s best that teachers and counselors are informed, as well as any other caring adults in their lives.  My clients report that counseling by a child psychologist or a member of the clergy is often a big help for their kids and grandkids.  Many communities have family-friendly cancer support groups.  The nurse at the oncologist’s office or the hospital social worker may know about the ones in your area. 

Accept “Respite Care”

One of the greatest gifts someone can give you is something called respite care.  By coming over and playing a game of Monopoly or watching a movie with your loved one, they allow you to get away for a spouse support group meeting, a dinner out with friends, an hour at the library, a special day with a grandchild or a class to learn yoga or regenerate your own faith.  

Caregivers also say that even a couple hours away can recharge their energies so they’re able to be loving and cheerful with their loved-one.  Still, they remind me, though positive thinking is a plus, it’s important to let the person talk honestly about everything from how they feel physically and emotionally to their sense of lost dreams and lost independence.  Try not to brush off their talk of death and, above all, remember that tears – yours or theirs – are not a sign of weakness.  Reassuring them that they are not alone, and still have value is so important now, as is emphasizing those things they still can look forward to.

Mesothelioma Patients: Finding Support in Many Places

I recently wrote about how important it is for mesothelioma patients to accept love and support from their families as they struggle with this disease.  Family members are the closest to you, know you better than anyone else, and want to be there to support you.  The comfort and care they offer will be critically important to you as you undergo treatment and deal with the physical and emotional toll that a diagnosis of mesothelioma brings.

But I also have learned over the three decades that I have represented mesothelioma victims that they need as much support as they can possibly get as they face this disease. In addition to accepting support from their families, my clients have found there are many others who understand and want to help at this difficult time in a mesothelioma patient’s life. While we primarily represent our clients in the legal arena to provide financial security and peace of mind, we have observed several practical approaches to this terrible disease that need to be considered and discussed.

 Support from Others Who Know How You Feel 

Studies show that support groups actually improve the quality of life for cancer patients– something I’ve seen time and again with my clients. One reason is the opportunity to speak honestly (yes, even with total strangers) about how you feel about everything that’s happening to you. Some 25 million Americans have turned to a support groups for help which is simply a testament to the fact that they truly help.

At the International Mesothelioma Program (IMP) at Brigham and Women’s Hospital in Boston, they not only provide state-of the-art medical care, but they are also committed to providing emotional support for mesothelioma patients.  That support includes social workers, pastoral caregivers, and palliative care professionals who work to improve the quality of life for patients and their families. The IMP Support Groups provide an opportunity for patients and their families to learn from and support one another. By hearing and sharing their stores and experiences, patients and families can learn to cope and to have hope.  While there are family Support Groups at the IMP, there is one group that is solely for patients.  It is a time when you can be with others who can fully understand just how you feel and who can share thoughts on how they are coping with their cancer and its far-reaching ramifications.

Recently two of my clients were undergoing treatment at the International Mesothelioma Program.  One client had already undergone his operation which involved the removal of his lung followed by heated chemotherapy treatments at the site of the operations- a treatment technique developed at the IMP.  My other client who was awaiting his surgery wanted nothing more than to simply talk to that patient who had successfully gone through the operation he was about to undergo. Both garnered a great deal of emotional support talking with each other.

Support in Strengthening Your Body

Diagnosis and treatment can take its toll on even a very fit person going through mesothelioma, not to mention the effects of the disease process itself.  Over the many years I have worked with mesothelioma patients, I’ve seen a range of supports ease the body’s adjustments considerably.  Studies show that exercise can go a long way to help, especially the kind that stretches the muscles and keeps them supple.  You may not think of yourself as a “yoga person,” but you might want to give it a try for strength and stretching, and to balance parts of you that can become out of whack with treatment. Many of my clients also keep up (or take up) the walking habit, in the fresh air when the weather is good, and when too rainy or cold, on a treadmill. Others swim, bike, golf or bowl. Whatever you do, keeping active for as long as you can is one of the best favors you can do for yourself.

Support in Minimizing Pain, Distress, Anxiety and Depression

Sometimes we’ve seen that the fear and distress following diagnosis can make our clients feel pain more keenly and disturb their sleep. Depression affects as many as 25 percent of cancer patients. In such cases, it can be very helpful to have someone outside the inner family circle you can talk to about what you’re going through. Many psychologists, as well as clinical and social workers, specialize in helping people who are battling disease. You can ask your doctor to recommend someone he or she thinks you would get along with well.

Or you may prefer taking your clergyman or increasingly these days, your clergywoman, into your confidence. Many of my clients have told me the clergyperson at the hospital has been extremely helpful and available with they needed them most. They might be a lot younger than you, but my clients tell me they’re often surprised at how much the clergy understand about what they’re going through and some of the sound and useful advice they offer.

 Along with talking it out, there are medications to help with pain and insomnia. You will need to work with your doctor to try various types of sleeping aids to see which one works best for you and then adjust the amounts and timing for your own needs. Today’s medications also address anxiety, insomnia and depression. If I could tell my clients one thing, it’s that needing help through this time in your life is NOT a sign of weakness, but a sign of strength to get yourself the best quality of life available to you.

Support from Your Community

You may be pleasantly surprised to find that, in addition to their clergy, your church, synagogue or mosque may have a caring committee that helps out members who are experiencing life changes (be they illness, a new home or a new baby). In addition, buddies from your clubs and maybe a veterans group may be willing to lend a hand. If you’re still working, you may be surprised that your employer may let you work part-time or from home for a while. Many of my clients tell me that going to work, even if just a few hours a day, or keeping up with a volunteer job, is the best medicine of all. Your local office of the American Cancer Society may have a list of volunteers (often survivors themselves) who drive people to appointments, treatments, etc. You may also be surprised by the wide variety of hospice care available. More and more, hospice works to increase clients’ peace, comfort and dignity at home, allowing people to stay where they are most comfortable, relaxed and happy, and surrounded with the people they’re closest to.   

Welcome Support with Open Arms

Mesothelioma patients face a daunting challenge and will need much love and support from family, friend, doctors, counselors, and their community. Do not be afraid to ask for this support.  Receive the support and care from others with open arms and gratitude.  I can tell you from my own experiences with my mesothelioma clients that all this support makes a difference in the quality of life mesothelioma patients have as they combat this disease.

Mesothelioma Patients Accepting Support from Family

As a mesothelioma lawyer, I represent my clients in their legal claims against the asbestos companies that sold the asbestos products that caused their mesothelioma. I have explained to all of my clients that their cancer could have been avoided if these companies had warned about the dangers of asbestos which they were required to do.  I have stood before juries and have argued cases on behalf of my clients finding satisfaction in providing them with a means for financial security in spite of this disease’s deadly toll.

Whether through trials or settlements, I can provide to my clients a financial recovery that enables them to meet the costs of their treatment, pay their bills, and provide for their family now and in the future.  While I cannot give back to any one the time and experiences lost because they have this devastating disease, I can give them the peace of mind to know that they and their family have the resources to deal with this disease and to continue in spite of it.

But I have learned over these past three decades that mesothelioma victims need as much support as they can get as they face this disease. There are many ways mesothelioma patients can find the support they need to help them cope with their cancer. My clients have found that support from family members is key.

The Biggest Challenge

For many of my clients, one of their biggest challenges is to be able to accept help, be it from loved ones and friends, medical professionals, counselors and their community.

But learning to accept support without feeling bad or sad about it is one of the most important skills any one of us can learn. Your whole life you‘ve been working hard, paying taxes and social security and taking care of others. Now it’s your turn to let your family and close friends and relatives help you in return.

You need to feel understood, accepted and listened to. It’s important to still feel needed maybe in new ways, allowing you to give back whenever you can. It’s important to remember that, even in the face of mesothelioma, you are still you and fully capable of making decisions that affect your life and future.

Support from Family and Friends

This is your inner circle, and each person will give what they can. My advice is never to think, “I don’t want to be a burden.”  Helping you – picking up a few groceries, getting a relative at the airport, taking you on an errand, bringing in a meal, walking the dog — makes them feel like they’re doing something. You’re going to see some of them are more comfortable with the situation than others and sometimes, when people don’t know what to say, they stay away. That’s where you or your caregiver can help by suggesting ways to help. You can also try being honest about how you feel, even if that’s not usually your style.

One piece of advice: You don’t have to repeat your story, with all the latest details, to everyone who calls, visits or e-mails their questions and concerns. Sometimes you can sum it up in a few words and ask if they want to be added to an e-mail list of people who want to keep up with the latest on your condition. (You can give that responsibility to one of your kids or perhaps a close friend.)

Families Drawn Together in Difficult Time

Through the years that I have represented mesothelioma clients, I have seen many family members come around clients and forge very close and powerful relationships. Often times, bonds that were already close are strengthened even further.  But in other cases, I have seen meaningful relationships develop that previously had been strained, lost or neglected in the demands of life.  The incredibly difficult circumstances that surround a diagnosis of mesothelioma also afford a unique opportunity for many families.

Welcome Support with Open Arms

Mesothelioma patients face a daunting challenge and will need much love and support from family and close friends.  Do not be afraid to ask for this support.  Receive the support and care from others with open arms and gratitude.  I can tell you from my own experiences with my mesothelioma clients that all of this love and support will help you through the difficult times of dealing with this tragic disease.

Mesothelioma Strikes Unexpectedly

I have represented hundreds of US Navy veterans suffering from mesothelioma throughout my 33 years as a mesothelioma lawyer.  When I read stories of men and women who served our country and who have been diagnosed with terminal mesothelioma, it never ceases to sadden me.  These brave men and women survived the perils of wartime service – whether it was World War II, Korea, Vietnam, or the Cold War.  Yet decades later, they face an enemy they cannot conquer – mesothelioma, a cancer caused by asbestos that they were exposed to during their naval service.

What is so disconcerting and frightening to so many of my mesothelioma clients is the completely unexpected way this disease strikes.  Mesothelioma has an extended latency period so symptoms do not develop until 30 to 40 years after my clients worked around asbestos.  Often US veterans have completed their naval service and gone on to pursue other rewarding careers far removed from any further asbestos exposure.  Then decades later- without warning- they are diagnosed with mesothelioma.  Medical science is still researching the individual factors that result in one person contracting mesothelioma while another who worked right next to him remains disease free.  While the individual variables remain uncertain, one thing is certain – asbestos caused this deadly disease.

Tragic Cases of Mesothelioma

Mesothelioma strikes unexpectedly.  It may occur when one has had a long and outstanding naval career or when Navy service is a faint memory.  Admiral Elmo Zumwalt had an exceptional navy career and served as the Chief of Naval Operations for almost 30 years when he was unpredictably diagnosed with mesothelioma.  Others have been diagnosed with mesothelioma decades after they had left naval service. This was the case of a world renowned forensic artist whose navy service ended in the 1960’s.  He had pursued a long career as a forensic sculptor and helped to solve many murder mysteries by identifying murder victims and wanted criminals.  Although this forensic artist spent his life helping to solve the mystery of other people’s death, the cause of his mesothelioma is no mystery.  He and Admiral Zumwalt both served on Navy ships covered with asbestos.

Asbestos insulated equipment on a Navy Ship

To a US Navy veteran, his ship was his home.  This was where he lived and worked day in and day out. Here he ate, slept, and spent his spare time with his shipmates.  Yet here is where these veterans were exposed to asbestos.  Navy ships were covered with asbestos from stem to stern from the 1930s until the mid 1970s and even into the 1980s.  Every type of Navy ship had asbestos insulation throughout the entire ship, including Navy destroyers, the “work horses” of the fleet.  The Navy’s destroyers faced battles in virtually every theatre of action throughout World War II and their crews earned innumerable honors.  Little did these Navy seamen and officers know that the tons of asbestos that had been used to insulate the equipment and machinery were as dangerous as the enemy they were fighting.  These seamen were exposed to the asbestos dust generated from the asbestos insulation as the ships were operated and repaired.  As a result, all Navy seamen and officers are at a high risk of developing mesothelioma.  Sadly, many have already died from mesothelioma.

Asbestos Use on Navy Ships

Through my work as a mesothelioma lawyer, I have assembled literally millions of pages of documents that show when, where and how asbestos products were used on Navy ships.  Our extensive Navy archival library contains blueprints and other navy records documenting the extensive use of asbestos-containing machinery, valves and piping.  Whether the ship was steam-powered or diesel-driven, there were extensive amounts of asbestos present.

Asbestos insulated forced draft blower

On steam-powered vessels, high-pressure steam operated the main turbines that powered the ship through the water.  These turbines were insulated with asbestos pads, cloth and cement.  In addition, all of the other machinery and equipment that was needed to run the ship was also operated by steam and was insulated with asbestos.  This included feed pumps, forced draft blowers, lubricating systems, fire and bilge pumps, and the like which were driven by their own steam-driven turbines, called auxiliary turbines.  The high-pressure steam lines and all of the turbines and machinery required asbestos insulation to protect the navy seamen from being injured by the hot surfaces.  Insulation was also needed to keep the temperature within the machinery spaces low enough so that the men could work in the engine and boiler rooms.

USS Edsall DE-129

Diesel powered ships also used extensive amount of asbestos.  Diesel-driven destroyers, like those of the Edsall class built during World War II, were powered by large four diesel engines. Significant amounts of asbestos were used to insulate the large sections of piping that comprised the exhaust system of these diesel engines.  There were also hundreds of asbestos gaskets used on these diesels engines and in other piping systems.  Even cold water pipes had asbestos on them.  For anti sweat purposes, asbestos was used on the piping carrying water throughout the fire main system, as well as other cold water systems.

As Navy seaman operated both steam-powered and diesel-driven ships, they were exposed to asbestos dust that became airborne as the engines and other equipment and piping were maintained and repaired.  Navy seamen and officers were unaware of the dangerous nature of the asbestos dust that was all around them.  They certainly did not know that breathing this dust could lead to an asbestos-related cancer.  Yet this deadly cancer has unexpectedly taken the lives of thousands of US veterans over the past three decades and continues to claim the lives of unsuspecting victims.

Mesothelioma and Your Legal Rights

My mesothelioma clients are often angry and confused when they learn that the companies who sold these asbestos products were aware of the deadly nature of asbestos.  It had been known for decades that breathing asbestos dust could cause lung disease and mesothelioma, but the companies that used asbestos in their products failed to warn workers and Navy seamen of these health risks.  I have represented thousands of clients who have contracted asbestos-related diseases in their claims against these companies for their failure to warn of the dangers of asbestos.  Had these seamen been warned, they could have taken the necessary precautions to prevent them from breathing this deadly dust and contracting this devastating cancer.

If you or a loved one has mesothelioma, do not hesitate to call me if you would like to talk about your legal rights and what that means in your situation.  When my clients first meet with me, they have many questions that I am able to answer for them.  I would be pleased to do the same for you and your family.

“Patient Navigators” Helping Mesothelioma Patients Navigate Through Treatment

My clients have often told me that after hearing their doctor say “You have been diagnosed with mesothelioma,” they don’t hear much else being said.  This devastating diagnosis often comes with an expected survival time of less than a year.  Receiving a diagnosis of mesothelioma is understandably an overwhelming experience for both patients as well as their families.

Doctors will typically recommend a multimodality approach as the best course of treatment.  Multimodality treatment involves the combination of surgery, chemotherapy, and radiation.  As you can imagine, this type of treatment involves a whole team of doctors including oncologists, surgeons, and pulmonologist as well as other specialists.  This means lots of doctors and appointments that patients will need to keep track of.  Dealing with this devastating cancer can be enough of a job never mind keeping a schedule of doctor appointments.  Assistance in helping mesothelioma patients navigate the sometimes confusing paths of the medical care system is welcome.

Patient Navigators Are There to Help Mesothelioma Patients

Many medical centers have begun to keep “Patient Navigators” on staff to help patients better understand medical information and stay organized during this difficult time.  Patient navigators are trained health care professional that offer guidance and support during a patient’s treatment.  The job of a patient navigator is first and foremost to alleviate as much stress and confusion for patients and their families as possible.  Their job also entails setting up appointments at the most convenient time for the patient, meeting with the patient’s medical team to discuss the plan for care and treatment, and keeping a list of all prescriptions, medications and ongoing treatments, discussing with the medical team progress or difficulties the patient maybe experiencing.

Although medical care is the first priority of a mesothelioma patient, there are also additional needs that may arise during treatment.  An effective patient navigator will be expected to assist patients with medical insurance issues and financial assistance.  Since patients sometimes live a great distance from the closest cancer treatment center, a navigator may be responsible for coordinating transportation to and from the treatment facility.  During cancer treatments mesothelioma patients may experience side effects which may lead to a lack of proper nutrition.  A patient navigator should be proficient in making sure the patient maintains proper nutrition and strength for treatments.  A positive mental attitude is also essential to fighting this devastating disease, a navigator should check in on a patient’s overall mental health from time and time and be able to suggest suitable counseling or support groups for patients and their loved ones.  The patient navigator is there to make sure the patient does not feel alone during this difficult process.

The Patient Navigation Program at Queen’s Cancer Center

Queen's Cancer Center, Honolulu, HI

A great example of an innovative Patient Navigation Program is at Queen’s Cancer Center in Honolulu, Hawai‘i.  At Queen’s, a group of highly trained professionals guide patients through their medical treatment and transition from inpatient to outpatient care when necessary.  The result for the patient is improved medical care, more focus on quality of life and an overall better experience for the patient at an extremely difficult time.  The Patient Navigation program at Queen’s Cancer Center has drawn national recognition for the fantastic work they are doing with their patients.

Patient navigation programs offer mesothelioma patients the ability to focus on their treatment and overall health leading to a better quality of life.  My firm and I are always eager to find new programs and treatments that may lead to an enhanced quality of life for our clients suffering from mesothelioma.  Navigating the paths of mesothelioma treatment can be at times be dark and confusing but with the help of patient navigators to light the way the journey through medical care can become less bewildering.

From the Laboratory to the Mesothelioma Patient

As an attorney who works with clients suffering with mesothelioma, I continually wish medical science would find a cure for this devastating disease.  But to find a cure for malignant mesothelioma it will take more than wishes.  Every day teams of researchers and doctors are working diligently to unlock the mysteries of mesothelioma, to develop new and improved treatments, and to find a cure for this debilitating cancer. It will require the close collaboration of researchers and treating physicians to find that cure.

Communication Essential Between Researchers & Physicians

Laboratory

Researchers and treating doctors inhabit two very different worlds.  Researchers work in laboratories studying cells and molecules.  They are looking to identify how and why mesothelioma develops and rapidly spreads. They also are working to develop new methods for treatment, diagnosis, and eventually prevention and a cure for this rare cancer.  Researchers typically have little to no interaction with the patients that they are trying to help through their research.  Although their research is typically the basis for clinical trials, treating physicians take over and care for the patients once the clinical trials have been established. Physicians get to know their patients intimately while caring for them in clinics and hospitals.  Although the work they do differs, researchers and doctors are aiming for the same goal, a cure for mesothelioma.  Communication between these two worlds is key to provide the best outcome for the patient.

Researchers have become increasingly aware of their role in communicating the results of their research to physicians.  This gives physicians the ability to “translate” the results of this research into new and effective therapies and treatments for patients.  This is called “translational research.”  Likewise, the doctors’ feedback is very important to the researcher so they can learn how the patients are responding to the new therapies.  This feedback allows the laboratory researchers to adjust and revise their work based on the patients’ progress.  This communication between researchers and physicians or “bench to bedside” is not always easy.  Laboratory researchers and doctors at times seem to use different languages.  However, the patient is at the very heart of this collaboration and is the most important reason that this strong effort toward enhanced communication must be made.

Dr. Giovanni Gaudino
Dr. Giovanni Gaudino

World renowned Italian medical researcher Giovanni Gaudino describes the work of the researchers:

“We are used to working with molecules, with cells and with experimental animals, while physicians are used to working with real live patients, and of course we use different terminology sometimes. In some cases, collaboration is very useful and successful, and we can say, especially for us who are used to working in the labs, it is exciting to meet the patients that are surviving or doing better.  Even small improvements are very important to us.  It’s a very interesting and emotional experience.”

The Researcher and the Mesothelioma Patient

Ordinarily, research scientists do not have a chance to meet mesothelioma patients during clinical trials.  When clinical trials begin, the researchers “step back.”  However, on some occasions, scientists do have the chance to meet these patients.  Dr. Giovanni Gaudino has had this wonderful privilege.  He explains:

“I saw patients with incredible increasing quality of life. And to see that what we are doing could help individuals to feel better is something very, very special that I’ve never experienced before.”

The patients involved in this clinical trial were happy, they were active, and they also recognized the importance of the work going on in the laboratory.  Dr. Gaudino found that this was a very powerful and emotional experience to see that his work as a research scientist is helping these patients.

A Cure For Mesothelioma

I continue to hope that someday soon there will be a cure for mesothelioma. I take comfort in knowing that researchers and doctors are hard at work collaborating on this effort.  The communication between these two groups will lead to new and better clinical trials and ultimately to a better outcome for mesothelioma patients.

The Importance of Clinical Trials

Many of my clients who are suffering with malignant mesothelioma have shared with me the struggles they face in deciding upon and pursuing treatment options. Although new treatment options are continually being researched, patients are often prescribed conventional treatments which include surgery, radiation and chemotherapy.  These treatments may also be prescribed in combination with each other which is known as a multi-modality approach.  Medical researchers and doctors are working hard every day to discover new ways to treat this aggressive cancer.  Their research and findings often lead to the initiation of clinical trials.

Medical Lab Technician

Clinical trials are studies performed with human subjects to test new approaches to treatment.  They may involve testing new drugs or combinations of drugs or new approaches to surgery or radiotherapy. Very importantly, these trials can include procedures to improve the diagnosis of disease and the quality of life of patients.  Clinical trials are imperative in the search for new treatments, and someday a cure, for malignant mesothelioma.  I believe a cure for malignant mesothelioma will ultimately be found as a result of clinical trials. But for patients suffering with malignant mesothelioma, time is of the essence. Unfortunately, it takes time for new therapies to be approved by the Food and Drug Administration (FDA) in the United States.  Clinical trials offer the best opportunity for patients to be exposed to new therapies and to assist in the advancement of medical knowledge regarding mesothelioma.

Dr. Giovanni Gaudino, Mesothelioma Researcher, Believes Clinical Trials Are Key

Dr. Giovanni Gaudino is an Italian medical researcher whose work is primarily focused on asbestos and its relationship to the development of mesothelioma.  In addition to his research in Italy, Dr. Gaudino conducts some of his mesothelioma research in the United States at the University of Hawai‘i Cancer Center.  Last year, I had the pleasure of sitting down to discuss mesothelioma treatment and the hope his research offers.  Dr. Gaudino told me that

“… since this cancer is so aggressive, since the incidence of this cancer is increasing, we have to go fast to find new therapies, effective therapies.  And the only way to do that is to foster as many clinical trials as possible.  I know that clinical trials . . . can be seen as an experiment on humans . . . And for individuals this could be hard to accept . . .  to be part of an experiment.  But at this point, clinical trials, I think, are the best way to try something new to get rid of this disease.”

Which Clinical Trial May Be Right for You

Hospital Laboratory

The National Cancer Institute (NCI) is the coordinating center for clinical trials for mesothelioma.  The NCI website contains a list of on-going clinical trials.  With nearly 100 clinical trials listed, it can be confusing to decide which trial may be the right one for you.  Your doctor can help you to determine which therapy may be the right fit.  A physician will evaluate you to see if you have the right “markers” for enrollment for a particular clinical trial.  Although clinical trials offer no guarantees that they will work, they offer the possibility for a better quality of life, a longer survival rate, and hope for someday finding a cure for this devastating disease.

Through my work as a mesothelioma lawyer, I have personally seen the benefits that mesothelioma patients can gain from enrolling in clinical trials.  Patients should be encouraged to consider clinical trials as part of their treatment.  My firm and I continue to support the work that researchers, scientists, and doctors are doing to advance treatments for mesothelioma.

Three Outstanding Treatment Facilities For Mesothelioma Patients To Evaluate

When patients receive a diagnosis of mesothelioma, it is important for them to explore the many outstanding mesothelioma treatment centers located throughout the country.  Over the 33 years I have represented mesothelioma patients, I have developed a strong bond with my clients and their families.  I am very aware of the devastating physical, emotional and financial consequences this disease brings, particularly as patients undergo treatment.  

I have observed an evolution of treatment for mesothelioma patients and know that there are many excellent institutions and cancer centers that have made great progress in advancing treatments.  I have also had the privilege to interact with the researchers and treating medical professionals of great cancer institutions, and I am constantly encouraged by their dedication and unwavering commitment to helping their patients and my clients live richer and longer lives.  These professionals and outstanding treatment and research facilities continue to provide me with hope that one day we will find a cure for mesothelioma. 

There are many cancer treatment centers throughout the country. Your doctors will recommend facilities for you to assess and you may also find cancer centers on your own that you will want to investigate. The goal is to find the best place for you to be treated given your unique circumstances.

Below are three very well-known mesothelioma treatment centers.  All three of these cancer centers are listed on The National Cancer Center’s list of designated Comprehensive Cancer Centers.  Patients should be aware of these cancer centers as they consider where they will be treated.

The International Mesothelioma Program at Brigham and Women’s Hospital (IMP) is located in Boston at the Brigham and Women’s Hospital, which together with the Dana-Farber Cancer Institute has combined resources to provide comprehensive care to mesothelioma patients.  It is currently the largest program of its kind in the world. 

Dr. David Sugarbaker, M.D. is Chief of Thoracic Surgery and founder of the IMP.  He was inspired to form the program due to the rising increase of mesothelioma cases worldwide.  The ultimate goal at the IMP is to offer patients suffering from malignant mesothelioma the most up to date and newest treatments available. 

The program is focused on developing techniques that can drastically improve the life expectancy of the patients.  Dr. Sugarbaker has developed a procedure that includes a novel combination of surgery and chemotherapy drugs.  During the surgery, Dr. Sugarbaker applies heated chemotherapy drugs directly to the chest cavity.  Statistics have shown that this surgery plus the use of the intracavitary chemotherapy has extended the lives of some mesothelioma patients beyond the often quoted life expectancy figures.

Currently the program consults with over 300 mesothelioma patients annually and treats over 180 of these patients.  The IMP is focused on research for finding new treatments and ultimately a cure for mesothelioma. 

The Mayo Clinic, Rochester, Minnesota

The Mayo Clinic is experienced in the treatment of many types of cancers and illnesses including mesothelioma.  The clinic believes in taking a team approach to the treatment of mesothelioma.  They assemble a team of experts that include pulmonologists, thoracic surgeons, oncologists, radiation therapists and pathologists to provide the best approach to treatment.  Specialists at the Mayo clinic are highly trained and experienced in the diagnosis and treatment of this devastating disease. 

The Mayo clinic offers accessibility to the latest research through the Mayo Clinic Cancer Center.  The cancer center is comprised of three campuses — Phoenix/Scottsdale, Arizona; Jacksonville, Florida; and Rochester, Minnesota.  Having locations in three different states provides the Mayo Clinic Cancer Center with the ability to reach a diverse population of patients and access to world-renowned physicians and scientists. 

The Mayo clinic is also a part of the Minnesota Partnership for Biotechnology and Medical Genomics which was founded in 2003, and includes the University of Minnesota and the State of Minnesota.  The partnership was established out of the desire to advance Bioscience research in the state of Minnesota.  Most recently the Minnesota partnership was awarded $6 million in state-funded research.   A portion of the awarded funds will be used towards mesothelioma scientific research.  The Mayo Clinic is devoted to further understanding the biology of cancer and mesothelioma.  They are constantly making new advances towards the prevention, treatment and diagnosis of cancer to help improve the quality of life for patients.

University of Texas, M.D. Anderson Cancer Center

The University of Texas M. D. Anderson Cancer Center, located in Houston, Texas was founded in 1941 as part of the University of Texas System  which includes nine universities and six health institutions.  This year marks the 70th anniversary of the Center’s creation.  Since 1944 over 800,000 patients have been treated at M.D. Anderson.  Its motto is “Making Cancer History.”  The center uses a multidisciplinary approach that includes immunotherapy, chemotherapy, radiation therapy, and surgery.  Because its experts focus in the treatment of cancer, M. D. Anderson is well-known for the ability to treat all types of cancer, including rare and uncommon cancers such as mesothelioma.

The Mesothelioma Program at the M.D. Anderson Cancer Center believes in a team approach to treating this rare and aggressive mesothelioma cancer.  This team includes the departments of thoracic cancers, thoracic surgery, pathology, cardiothoracic oncology, medical oncology, and radiation oncology.  With a team of almost 40 physicians and researchers, it is considered one of the largest mesothelioma treatment teams in the country.
 

Anne S. Tsao, M.D. is the Director of the Mesothelioma Program at MD Anderson.  Dr. Tsao’s research for chemical indicators in mesothelioma patients has provided Doctors and researchers with a better understanding of the behavior of the malignant mesothelioma cells.  This understanding has allowed doctors to recommend more specialized treatments for patients.  Dr. Tsao is highly respected among her peers for her many achievements in her work with mesothelioma.

In 2010, U.S. News & World Report’s “America’s Best Hospitals” survey ranked MD Anderson as the top hospital in the nation for cancer care. 

The International Mesothelioma Program, Mayo Clinic and M.D. Anderson Cancer Center are just a few of the country’s top notch mesothelioma treatment facilities.  I highly urge my clients and anyone suffering from mesothelioma to research these facilities and other cancer treatment facilities and discuss them with your doctor to determine which treatment center may be the best option for you.

Lifelong Pals and World War II Veterans Visit the WWII Memorial at Last

I have had the privilege of representing many US Navy veterans through my work as a Mesothelioma lawyer and am always interested in stories about World War II veterans.  I feel especially close to these war veterans, not only because of the work I have done representing them, but also because my father served during World War II.  He was a submariner on the USS Sealion, a diesel submarine that was barely longer than 300 feet.  Later during the Korean War, he served on the USS Ronquil, another diesel sub with equally cramped quarters.  My father always took great pride in his navy service and had a special bond with those with whom he served. I enjoy reading stories about the camaraderie that these war veterans shared. A recent story about two veterans reminded me of that bond.

Lifelong Pals Visit to the WWII Memorial

Bill McGarry and Bill Mark have been friends for over 60 years.  They grew up two blocks

World War II Memorial in Washington D.C.

apart in Chicago and both attended St. Rita High School.  They were born a month apart and were both drafted for World War II within the same month.  Bill McGarry served in the US Navy as a dynamite expert, while Bill Mark served in the Army.  Both men fought in battle and were shot by enemy fire, but avoided serious injury. Despite a few injuries, both men returned home after the war in one piece.  The two veterans, now 85 years old, have remained friends all of these years.  It seemed only fitting that these two veterans together visited the World War II memorial in Washington DC. Their visit was compliments of the Honor Flight Network, a volunteer service that flies World War II veterans free of charge to see the memorial built in their honor.  On June 29, 2011, this program took 95 veterans to Washington D.C. to tour the memorial.  The group included veterans Bill McGarry and Bill Mark.

US Navy Veterans and Asbestos Products

It is important to remember that US veterans, like Bill McGarry and Bill Mark, not only faced the dangers of war time battles, but they also faced another deadly dangers as they served their country. Veterans, especially US Navy veterans, were exposed to asbestos.  As a result, they are at a high risk of contracting mesothelioma, a cancer of the lining of the lungs caused by asbestos.  Veterans were exposed to asbestos dust while they carried out their wartime duties of building and operating US Navy ships ladened with asbestos products.  These cases of mesothelioma could have been prevented if the companies that sold these products had warned these veterans of the deadly dangers of breathing this dust.

Literally tons of asbestos insulating materials were used on US Navy vessels-ranging from asbestos pads, felt and cloth to asbestos pipe covering and cement to asbestos gaskets and packing. Until the 1980’s, a Navy ship’s machinery and piping would be covered with asbestos insulation from stem to stern.  Asbestos was released into the air and breathed by shipyard workers and Navy seamen as the ships were built, operated, and repaired.

Asbestos pads were used to insulate equipment and machinery. These pads were also used on the thousands of flanges and valves found throughout the ship. They were designed to be easily removed for routine maintenance of the ship’s equipment. Because these asbestos pads were routinely removed and replaced, their handling generated asbestos dust. Each time the pads were handled, shipyard workers and seamen were exposed to dangerous asbestos dust.

Asbestos Pipe Covering was rigid, and pre-formed. These rigid forms of insulation were used to insulate piping and came in a variety of round sizes and were typically three feet in length. The asbestos pipe covering was wrapped with asbestos cloth and troweled with asbestos cement. The cutting and sawing of this rigid pre-molded pipe covering exposed shipyard workers and Navy seamen to asbestos dust and fibers.

Asbestos Cement, Cloth, Tape, and Thread were used in conjunction with asbestos pads and pre-molded pipe covering to build out the insulated surfaces. Asbestos cement was used over all of the various insulating materials to fill cracks, form an extra layer of insulation, and provide smooth surfaces for painting. Asbestos cement was typically mixed dry to form a slurry that was troweled over asbestos pads, pipe covering, and other insulated surfaces. Significant amounts of asbestos fibers became airborne each time asbestos cement was used.  Asbestos cloth was wrapped around pre-molded pipe covering and was typically installed over the asbestos pads that covered the equipment, machinery and valves.

Asbestos-Containing Gaskets and Packing were used on almost all of the equipment and machinery, valves, fittings, and pipe connections on a Navy vessel.  Asbestos gaskets were often cut from compressed asbestos sheet materials that contained 80% or more asbestos fiber. There were literally thousands of asbestos gaskets used throughout US Navy ships. Asbestos packing was used in valve stems to prevent leaking. To repair a leaking valve, the valve was opened and rings of deteriorated asbestos packing were removed. This was typically accomplished with a tool that looked like a cork-screw.  The removal of old asbestos gaskets caused the release of asbestos fibers as the surfaces were sanded by hand or with pneumatic tools and wire brushes. Similarly, all of the old and deteriorated asbestos packing had to be dug out of valves before new asbestos packing could be installed.  Shipyard workers were exposed to the asbestos dust generated from the installation of asbestos gaskets and packing during new ship construction. In addition, during the overhaul and repair of Navy ships, workers were exposed to the asbestos fibers from the gaskets and packing.

US Veterans and Their Legal Rights

US veterans not only faced the dangers of wartime battles, but they also faced the hazards of asbestos exposure. Sadly, many veterans have succumb to mesothelioma as a result of their exposure to asbestos.  For over 30 years, it has been my privilege to represent veterans in their claims against the companies who made and sold these products.  I have helped mesothelioma victims in over 40 different states. If you or a loved one has been diagnosed with mesothelioma, please contact me.  I will answer any questions you have about your situation and your legal rights.