While any cancer diagnosis is extraordinarily difficult, it is particularly traumatic to be diagnosed with malignant mesothelioma.  However, you should not lose hope.  Although the average life expectancy for those diagnosed with mesothelioma is a year to 18 months, there are many who now live from two to five years and even longer.  From our experience representing mesothelioma clients for over 30 years, our firm Galiher DeRobertis & Waxman has gained some insight into how our clients have lived their lives after diagnosis.  Here are three important insights we would like to share.

Continue to Live Your Life to the Fullest

Many clients and their families tell us that their feelings range from shock to anger and denial, many finally come to a sense of acceptance and finding a “new normal.”  Today, some doctors believe that living with mesothelioma or any form of cancer should be viewed as living with a chronic illness, just as some people live with diabetes, arthritis or other chronic conditions.  Mrs. G-T, a client living with mesothelioma, shared her attitude with us:

“I have to live my life and I won’t let [the mesothelioma] take over me.  I have my grandchildren and my children.  They all count on me.  If you let it get you down, you won’t live a good life.  I feel I’ve been dealt this and I live with it.”

Mrs. G-T went on to tell us that her greatest joy was taking all eight of her grandchildren on a trip to Disneyland.  She recounted how much fun both she and her husband had with them.

Coordinate the Scheduling of Your Treatments

Undergoing chemotherapy, radiation and possibly surgery are not easy.  Scheduling appointments may seem like a simple task but with multiple physicians and facilities involved, that task may become overwhelming.  If you have someone who can help make the appointments for you and coordinate them to limit the number of trips back and forth to the medical center, that may help to ease some of the burden.

Some cancer centers have a patient navigator whose job is to coordinate your appointments and to see that things like medical insurance issues are handled.  One wife of a mesothelioma client told us that she made her husband’s appointments so that they could make one trip to the medical center.  They planned to stay for much of the day, and her husband took his reading material.  She got him his gourmet coffee to enjoy to begin his day.  Seemingly small things can make a big difference in a patient’s outlook and attitude.

Focus on Everyday Activities

During this time, it is important to focus on the things you like to do.  Some have found normalcy in going to work, even for shortened hours.  If you have a hobby like gardening or if you play a sport like golf, by all means, partake in the activity whenever you feel you can.  Many take trips to see friends or relatives or go to places they’ve always wanted to go to.  Another wife said her husband visited his relatives who he had seen occasionally over the years.  Her husband’s hobby was cooking, and he continued to make wonderful dishes.

We have observed many living with mesothelioma have an amazingly strong human spirit.  Carrying on with your every day routine in as usual a fashion as possible is helpful.  It is important to celebrate and enjoy the good days.  Be present in the moment.  Above all else, a positive, fighting spirit of living life intensely is key.

For over 30 years, Galiher DeRobertis & Waxman has represented clients who have been diagnosed with mesothelioma, lung cancer, asbestosis and other asbestos-related diseases.  When our clients are being treated for complex illnesses such as mesothelioma, they are treated by a team of medical professionals that may include a pulmonologist, pathologist, primary care physician, surgeon, and oncologist.  More often than not, these specialists work in separate facilities and do not have immediate access to records from other members of the medical team.

Health Care Professionals Need Faster Access to Necessary Records

Effective communication between members of a medical team is critically important, especially when treating a rare disease like mesothelioma.  When battling cancer or other illnesses, health care professionals need to be able to access necessary medical records quickly and efficiently.  It can be frustrating for both patients and their medical team members who are forced to wait or to go through the tedious process of requesting medical records.  Fortunately, the health care industry is now developing new procedures that are designed to avoid those frustrating delays by using electronic medical records.

Technology and the Future of Health Care

On January 6, 2010, Kaiser Permanente and the Department of Veterans Affairs, two of the largest health care organizations in the country, implemented a program that will allow them to share a patient’s medical records electronically.  This program will facilitate the exchange of medical data between Kaiser Permanente’s “HealthConnect” system and the VA’s “Veterans Affairs Health Information Systems and Technology Architect” or VistA system.  This will give medical professionals secure and instant access to information which could dramatically improve the quality of health care, and in the long run should lower cost.

This program represents the collaboration of two giants in health care services.  The Veterans Health Administration (VHA) became the largest single medical system in 2003.  Almost a quarter of the population is potentially eligible for these benefits, which are available to veterans as well as their family members or survivors.  In 2009, the budget for the VA health system was close to $90 billion.  Almost 280,000 VA employees work at medical facilities and benefit offices to coordinate the delivery of these services.  Because of the number of patients it serves, the VA became one of the first entities to develop a system-wide electronic health record system that it calls “VistA.”

On the civilian side, Kaiser Permanente’s “HealthConnect” represents one of the largest employer-developed electronic health records system in the country.  Over 8.6 million people are connected to their medical team and the latest medical information.  Every day over 90,000 users access this system.  There are 80,000 new users going on-line each month to utilize this system.

The exchange of medical records between two entities the size of the VA and Kaiser Permanente will help to eliminate the pitfalls of incomplete and unreadable records and lead to the delivery of higher quality care.  If this collaboration is successful, it is likely that many other health care organizations will follow the procedure of creating electronic medical records.  Better access to a patient’s medical history will lead to better care for mesothelioma patients who are being treated by a large team of specialists.

Because of the seriousness of the disease mesothelioma, the medical care and treatment are focused primarily on the patient suffering from mesothelioma.  However, at the International Mesothelioma Program (IMP) at Brigham and Women’s Hospital in Boston, Massachusetts, Dr. David Sugarbaker, its director and founder, and the entire IMP team pay careful attention to each patient’s caregiver as well.  They recognize that upon discharge from the hospital after a surgery such as an extrapleural pneumonectomy, the patient’s caregiver is essentially on call 24/7 to see that his or her loved one’s needs are met.  The caregiver is often the patient’s spouse.  However, in many instances a daughter or son, a sister or a good friend is the one charged with the duty of caregiving.

As one of our clients, who is also her husband’s caregiver, told her friends, everything leading up to his surgery was a whirlwind, leaving her little time to think about the extent of the care that would ultimately be required.  Her strong recommendation to other caregivers is to take some time for yourself while the patient is hospitalized.  Upon discharge, you will have medications to pick up and all the needs of the patient to tend to, along with the regular chores of daily living such as laundry and meals.

Family Support Groups at the International Mesothelioma Program

The International Mesothelioma Program supports the patients’ families and caregivers with regular Family Support Group meetings so that families can get together and share their stories.  No one feels alone.  IMP social worker, Charlene Haouiliya, says it is very important for the families to learn from and support each other emotionally.  Being treated at the International Mesothelioma Program is much more than a surgical or clinical procedure.  A mesothelioma patient’s caregivers often feel like their own circle of family and friends don’t really understand what they’re going through.  The weekly support group meetings allow families to connect with other families who do understand and who have similar experiences.

The IMP has two chaplains, who both agree that the Family Support Group helps to reduce the isolation often felt when a family is faced with a devastating diagnosis like mesothelioma.  Some important pointers come from those who have participated in the International Mesothelioma Program’s Family Support Groups, who remind other caregivers to take care of themselves too.  Key to this is having some respite or time off from caregiving.  If a relative is in town to see the patient, the caregiver could take a few hours to do something relaxing.

Dr. Sugarbaker also tells all the patients who are treated at this program that they are not alone.  They have friends and family to support them, as well as the excellent support systems that come with the IMP. Dr. Sugarbaker sums it up very well when he says:

“You have the support of other patients and families…you have the support of a clinical team that is focusing on you and your particular circumstances…you have a research team helping to improve the care and treatment we can provide…and you have yourselves and your inner strengths, your survival skills.”

Helpful Suggestions for the Mesothelioma Caregiver

Another strong suggestion for caregivers is to be sure to ask your questions of the medical team or the social worker.  Keeping a journal may be a good way to be able to recall later what was said, especially since so much is happening very quickly.  Your loved one may ask you later what happened, and the journal would be a good way of accurately recalling.

While it is helpful to talk with others whose loved ones are facing mesothelioma, it is also of critical importance to always remember that each patient is different from the next and that each person will react differently to seemingly similar procedures and medications.  In charting this course, the Family Support Group and the professionals from the IMP associated with it are a valuable and uplifting resource for the family and caregivers whose loved one is being treated for mesothelioma.

For over 30 years, the law firm of Galiher DeRobertis & Waxman has represented people who have been diagnosed with mesothelioma.  We have worked closely with our clients and their families.  We have also worked with treating physicians, clinicians, world-renowned researchers and scientists, and through our work, we have learned a lot about mesothelioma, and we have seen the evolution of mesothelioma treatment and care over the past three decades.

Today, the treatment and care of mesothelioma patients are often comprehensive and targeted at treating patients as a whole.  The International Mesothelioma Program(IMP) at Brigham and Women’s Hospital in Boston has become an excellent example of a facility that embodies this philosophy and approach to treating mesothelioma patients.  The  IMP offers state-of-the art treatment, cutting edge research, and an extended network of support for patients and families.  In terms of patient support, the IMP recognizes the need that patients have to talk directly with other patients about their experiences.  To meet this need, the IMP has developed a “Patient Matching” program.

Patient Matching Program at the International Mesothelioma Program

Dr. David Sugarbaker is the founder and director of the International Mesothelioma Program in Boston, Massachusetts, and is the Chief of Thoracic Surgery.  He possesses a great understanding of mesothelioma, but he also understands the devastating emotional effects this disease has on patients and their families.  According to Dr. Sugarbaker,  “Mesothelioma takes an emotional toll on patients and their families that cannot be underestimated; it can be nearly as significant as the disease itself.”

We all know that being faced with a serious, life threatening diagnosis such as mesothelioma can be frightening.  Patients begin to wonder what treatments are available to them, how they will respond to treatment, what will the recuperation period be like and so forth.  That is why the IMP has created the Patient Matching Program.
The Patient Matching Program connects current patients of the International Mesothelioma Program with survivors to help provide a more grounded perspective on the difficult and frightening prospects patients have to face when diagnosed with mesothelioma.  We all know how comforting it can be to hear encouraging words from someone who has been in your position before, and the IMP attempts to accomplish that through this program.

The program attempts to match patients by gender, age, state and the type of treatment received; however, many patients connect over the telephone and with patients of either gender and  any age from around the world, and strong bonds are often forged.

Mesothelioma Patient Matching Program Grows Exponentially

Doug Burnett, a farmer in Western Massachusetts, underwent surgery in early February of 2006.  Since then, he has been paired with more than 20 people from Florida to Israel.  He states that he and other patients often compare notes on medications and the symptoms they are experiencing.  Mr. Burnett stated, “We all need to pull together to get through this…I’m happy to do whatever I can to help.”
Mr. Burnett has given new hope and perspective to current or incoming patients who will hopefully give a sense of hope to a new generation of patients as the IMP continues to further its goal to provide mesothelioma patients with longer, healthier lives.

Patients at the International Mesothelioma Program (IMP) at the Brigham and Women’s Hospital in Boston, Massachusetts who have a confirmed diagnosis of malignant pleural mesothelioma routinely undergo a series of tests to determine the type of surgery they need.  One of these tests is called a “cervical mediastinoscopy,” which is used to biopsy the patient’s lymph nodes.  This test helps assess how far the cancer has spread.  This information, in conjunction with other test results, is used to help determine if the patient is a candidate for either a pleurectomy or an extrapleural pneumonectomy.

Cervical Mediastinoscopy Used to Biopsy Lymph Nodes

The International Mesothelioma Program  is one of the leading treatment centers for malignant pleural mesothelioma.  According to Dr. David Sugarbaker, who is Chief of Thoracic Surgery at the Brigham and Women’s Hospital and the founder and Director of the International Mesothelioma Program, the IMP consulted with over 300 malignant pleural mesothelioma patients last year and performed over 160 surgeries.  As part of the screening process for surgical candidates, a cervical mediastinoscopy is performed at the hospital to determine if the cancer has spread to the mediastinal lymph nodes.

A cervical mediastinoscopy is a hospital procedure performed under general anesthesia used to biopsy lymph nodes in patients with malignant pleural mesothelioma.  The surgeon makes an incision in the patient’s neck at the top of the sternum.  The mediastinoscope, which is a thin tube with a light and surgical instruments, is then placed through the incision where tissue samples are taken from the mediastinal lymph nodes.  The patient’s biopsied tissue is analyzed by a pathologist to determine if the malignant mesothelioma has spread to the mediastinal lymph nodes.  The IMP’s surgical team, led by Dr. Sugarbaker, uses this information to determine whether the patient is a surgical candidate and if so, the type of surgery that will be performed.

Published Research on Importance of Cervical Mediastinoscopy

In 1999, Dr. Sugarbaker and his colleagues published an article entitled, “Resection Margins, Extrapleural Nodal Status, and Cell Type Determine Postoperative Long-Term Survival In Trimodality Therapy of Malignant Pleural Mesothelioma:  Results in 183 Patients” in the Journal of Thoracic and Cardiovascular Surgery. Dr. Sugarbaker described the importance of mediastinoscopy as a staging tool for patients with malignant pleural mesothelioma.  A similar conclusion concerning the importance of cervical mediastinoscopy was reached by British physicians in a published article entitled, “The Case for Routine Cervical Mediastinoscopy Prior to Radical Surgery for Malignant Pleural Mesothelioma” in the European Journal of Cardio-Thoracic Surgery in 2004.

Mesothelioma Cytoreductive Surgery at International Mesothelioma Program (IMP) Increases Survivability

Patients diagnosed with malignant pleural mesothelioma are usually given a very grim prognosis, and in the past had very few treatment options.  However, due to the pioneering efforts of Dr. David Sugarbaker at the International Mesothelioma Program (IMP) at Brigham and Women’s Hospital in Boston, patients have a much better prognosis with surgery aimed at removing the tumor, followed by chemotherapy to kill any remaining cells.  These procedures are called cytoreductive (or debulking) surgery and intrathoracic heated chemotherapy administered during surgery.

Surgery to Remove the Tumor

Cytoreductive surgery falls into two categories:  (1) extrapleural pneumonectomy that involves the removal of the affected lung, and (2) pleurectomy and decortication which is the removal of the pleura and as much tumor tissue as possible.  The type of surgery that a patient receives at the IMP depends upon how early the mesothelioma was diagnosed and the extent to which the disease has spread.  It is part of the preoperative protocol at the International Mesothelioma Program to perform a procedure called a mediastinoscopy, to biopsy the patient’s lymph nodes in the  mid-chest area or mediastinum.  This procedure tells the physicians at the IMP the extent to which the malignant mesothelioma has spread.

If the patient’s malignant mesothelioma is discovered early enough, Dr. Sugarbaker may perform an extrapleural pneumonectomy.  Not only is the affected lung removed, but the diaphragm, pleura, and pericardium are also surgically removed.  The diaphram and other structures in the chest are re-built using Gortex, which is a synthetic gas-permeable membrane.   The other surgery, a pleurectomy/decortication is used to removed the diseased pleura and as much of the patient’s mesothelioma tumor as possible.

Chemotherapy Drugs Administered Immediately

At the International Mesothelioma Program, following either the extrapleural pneumonectomy or the pleurectomy/decortication, the patient’s chest cavity is infused with a lavage (washing out the organs) of heated chemotherapy drugs.  Researchers and physicians at the IMP have determined that there is much greater chemotherapy penetration when the drugs are heated and washed directly over the affected area compared to being delivered intravenously.  The purpose of the intracavitary heated chemotherapy lavage is to kill the malignant mesothelioma cells that might be left behind after surgery and that cannot be seen by the surgeon.

Success With Dr. Sugarbaker’s Techniques

Dr. Sugarbaker and his team have been very successful in using cytoreductive surgery and intracavitary heated chemotherapy in prolonging the lives of malignant pleural mesothelioma patients.  Dr. Sugarbaker reports some patients surviving five to ten years using this combination of surgery and heated chemotherapy.

Clinic Trials Recruiting Pleural Mesothelioma Patients

Brigham and Women’s Hospital, in collaboration with the Dana-Farber Cancer Institute in Boston, are currently recruiting patients with malignant pleural mesothelioma for two clinical trials.  The first is a Phase I clinical trial that will study the effects of extrapleural pneumonectomy/pleurectomy decortication followed by a combination of heated chemotherapy drugs Cisplatin and Gemcitabine administered during surgery.  The second is a Phase II clinical trial that will study the effects of pleurectomy/decortication combined with intraoperative heated Cisplatin, then followed by an intravenous administration of sodium thiosulfate to reduce the effects of the Cisplatin.

There once was an asbestos factory in the small town of Casale Monferrato in northwest Italy, known by its townspeople as the “factory of cancer”.  At one time or another, most residents of Casale Monferrato worked in this asbestos factory.  It was built in 1900 and continued in operation for many decades. In this very small town, the incidence of mesothelioma is about 16 times greater than that found in the rest of the country. It is anticipated that there will be a further increase in the incidence of mesothelioma up to 2020.

The factory workers and their families, as well as the rest of the town’s population, were exposed to asbestos from the Eternit Factory. Although work at the factory stopped in the 1980s, Dr. Giovanni Gaudino says that they “have huge environmental exposure to asbestos fibers. We are expecting, sadly, a high number of [mesothelioma] cases because of the long latency period for asbestos disease to develop.”  Thus, it was very fitting that Dr. Gaudino, who is a dedicated mesothelioma researcher, would continue to follow the incidence of disease in this population.  The Hospital of Casale Monferrato is included among several institutions participating in the Italian clinical trial involving use of the combination drug therapy of Gleevac and Gemcitabine.

Asbestos Today

While the sale of asbestos-containing products has been essentially banned in the United States since 1978, asbestos is still in use in much of the world today, with tragic consequences.  As he spoke to attorneys from the Galiher law firm, Dr. Gaudino explained that mesothelioma and other asbestos diseases are a worldwide problem. Due to the widespread use of asbestos all over the world, asbestos cancer has become a truly international problem. Many thousands of cases are expected in the next several years, not only in Italy, but also in Europe, the United States, Australia and other parts of the western world. Dr. Gaudino believes that asbestos disease “is a huge problem for society because there are many thousands of cases expected in the years ahead.”  He refers to the phenomenon as “the European mesothelioma epidemic.”

Like in Casale Monferrato, Dr. Gaudino notes that there are workers all over the world “who are much exposed to fibers.”  He also noted that there are often children who live nearby, and they are often “playing… close to these materials.”

While factories have been closed in Europe and the United States, they have moved to India and other emerging countries. A high incidence of mesothelioma cases is expected around the world, especially in the emerging countries, where asbestos is still legal and is still being used.  This will lead to an “even worse world ‘epidemic.’”

Many of us know that malignant mesothelioma is very difficult to treat.  Dr. Giovanni Gaudino, the prominent Italian medical researcher, talked to Galiher DeRobertis & Waxman about mesothelioma treatment and the hope his research offers.  He said:

“… 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 much as possible clinical trials.  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.”

Clinical trials are of paramount importance in the search for a cure for malignant mesothelioma.  There is general agreement that in most cases, conventional therapies are not working.  Time is of the essence, but it takes a very long time for new therapies to be approved by the Food and Drug Administration (FDA) in the United States.  The story is the same in Europe and in India – it takes a long time to approve a new treatment.  Clinical trials are a chance for patients to be exposed to novel therapies.  In some instances, existing, approved drugs are repurposed in new combinations.

To find a list of clinical trials, you can go to the National Cancer Institute’s (NCI) website.  With almost 100 clinical trials listed on this site, all with different drug combinations and approaches, this can be confusing.  How do you decide which therapy is the best?

You may wonder if one clinical trial is better than all others.  This is not the case.  Cancers, and mesothelioma in particular, come in many different forms.  As a result, no one therapy is right for all patients.  One therapy may be effective for one patient, or one population of patients, but not for others who may find other therapies are more effective.

The evaluation and initial determination of whether one qualifies for a particular clinical trial is an important discussion a patient must have with his or her physician.  In general, patients must be carefully selected for these trials.  Patients must meet certain criteria to participate in any given study.  You cannot simply choose a clinical trial.  You must be evaluated by physicians to see  if you have the right “markers” for enrollment in the clinical trial.  While enrollment in clinical trials offers no guarantee that they will work, all patients should be encouraged to consider them.

The Researcher and the Clinician – “Translational Research”

“We are used to work[ing] with molecules, with cells,…with experimental animals, while…physicians are used to work[ing] 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.” – Giovanni Gaudino

Researchers and clinicians inhabit two very different worlds.  The researchers work with cells and molecules in their laboratories, and usually do not see the patients that they are trying to help through their research.  The physicians, on the other hand, care for their patients in clinic and hospital settings, and often get to know their patients intimately.   But communication between these worlds – the world of the researcher in the laboratory and the world of the physician who is caring for their patient – is becoming more and more important.
As researchers become increasingly aware of their role in communicating the results of their research to physicians, the physicians, in turn, can “translate” the results of this research into new and effective therapies.  Thus it becomes “translational research.”  The clinicians’ feedback is also very important to the researchers, who learn how the patients are doing and how they are responding to the new therapies.  This makes it possible for the laboratory researchers to adjust and revise their work.

This communication between researchers and physicians or “bench to bedside” approach is not always easy.  This can be difficult because they sometimes seem to use different languages as they talk in technical terms specific to their field of expertise.  However, the patient is at the very center of this collaboration and is the most important reason that this strong effort toward enhanced communication is being made.  On the occasions when the researcher has the opportunity to meet patients and to know how they are doing, this too can be very inspirational and motivational.

The Researcher and the Mesothelioma Patient

“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.” – Giovanni Gaudino

Most of us do not think of research scientists having any contact with patients.  Ordinarily, research scientists do not have a chance to meet mesothelioma patients during clinical trials.  When clinical trials begin, the researchers “step back.”   However, in some instances, basic scientists do meet these patients.  Dr. Giovanni Gaudino has had this wonderful opportunity.  He describes this as an emotional experience because he saw the improvement in the mesothelioma patients’ quality of life, regardless of whether the therapy was successful in getting rid of the cancer or just stabilizing the disease.  These patients were happy, they were active, and they also recognized the importance of the work going on in the laboratory.  Dr. Gaudino explained that this was a very powerful emotional experience to see that as research scientists, they were helping these patients.