Mesothelioma Patients Find Comfort at the M. D. Anderson Rotary House International

M. D. Anderson Cancer Center in Houston, Texas has a well-deserved reputation for diagnosing and treating patients with rare and aggressive cancers such as malignant mesothelioma.  People frequently travel from across the country to M. D. Anderson for mesothelioma treatment.

Fortunately for these out-of-state patients, there is a full-service hotel which is dedicated to M. D. Anderson patients and their families.  This is the Jessie H. Jones Rotary House International.  While this hotel is managed by Marriott International, it is actually owned by M. D. Anderson Cancer Center.

Many rooms at the Rotary House

The Rotary House has 322 rooms, all of which have wheelchair access. Seven new executive suites offer 10-foot high ceilings with a private floor and lounge as well as other amenities.  Most of the 322 rooms offer kitchenettes for those who do not wish to dine out for every meal.   Cancer support groups meet regularly at the Rotary House and are conducted both informally and formally.

The Rotary House provides many benefits for mesothelioma patients and their families.  First, because the Rotary House is dedicated to M. D. Anderson patients, the cancer center itself can help with a patient’s bookings.  Second, there is a spirit of camaraderie among the many patients and their family members, who all can understand and relate to each others’ medical situations.  Third, the Rotary House actually provides entertainment for the patients and their caregivers, whether it’s salsa dancers, musicians, or St. Patrick’s Day parties.

A Walk Away in the Best Place to Stay

The Rotary House is merely a walkway away from the M. D. Anderson Clinics and Hospital.  Thus, there is no more convenient place in which to stay if you are an outpatient at M. D. Anderson Cancer Center.  There is no extra charge for parking and there are a variety of restaurants and shops within the Rotary House.  Most importantly, however, cancer patients are almost guaranteed to have an instant support system with the other “house guests”.  A number of clients of the law firm of Galiher DeRobertis & Waxman have gone to  M. D. Anderson for mesothelioma treatment and therapy.

Ilana Waxman, managing partner of Galiher DeRobertis & Waxman, said,”“When a person has been diagnosed with any cancer, but especially a cancer with a difficult prognosis such as malignant mesothelioma, quality of life is crucial.  Even with this diagnosis, you still have many options, including the choice of your medical team and where you will live during your medical treatment.  Finding accommodations that provide an instant support mechanism have been crucial to our clients.  As the treatment options become greater and more widely available, patients with mesothelioma can take back control of their lives from this disease.”

New Mesothelioma Guidelines for Clinical Practice Will Mean Better Care

Although the disease malignant pleural mesothelioma has been known and treated for decades, especially among shipyard workers and U. S. Navy veterans, pleural mesothelioma practice guidelines were first presented only recently, in March 2010, by Dr. Lee Krug, director of the Mesothelioma Program at Memorial Sloan-Kettering at the annual meeting of the National Comprehensive Cancer Network (NCCN).  The Malignant Pleural Mesothelioma practice guidelines encompass diagnosis and evaluation, treatment for the various stages of mesothelioma, chemotherapy, surgery and radiation therapy.  These guidelines serve as a practical outline for physicians faced with diagnosing and treating a patient with pleural mesothelioma.  The guidelines were developed through the collaborative effort of the NCCN Malignant Pleural Mesothelioma panel members.  The National Comprehensive Cancer Network is a nonprofit alliance comprised of more than 20 of the leading cancer treatment centers across the country.

Mesothelioma Surgery as a Viable Option

Dr. Krug in his presentation discussed surgery as an option for treating malignant pleural mesothelioma.  There are two types of surgeries; one is the decortication or pleurectomy and the other is the more aggressive approach which is the extrapleural pneumonectomy (EPP).  The extrapleural pneumonectomy involves resecting the pleura, the lung and the diaphragm.  This is a major surgery and should be performed by skilled surgeons, he remarked.  Dr. Krug indicated that the extrapleural pneumonectomy should be considered for patients with early stage mesothelioma.  He indicated there is a fair amount of controversy in the medical community about its use.

At the International Mesothelioma Program (IMP) at Brigham and Women’s Hospital, one of the member institutions of the NCCN, Dr. David Sugarbaker regularly and skillfully performs both surgeries with some remarkable results.

Chemotherapy and Radiation Therapy Necessary for Mesothelioma

The guidelines indicate that the first line chemotherapy regimen is pemetrexed (Alimta) combined with Cisplatin.  Even with surgery, both chemotherapy and radiation therapy are recommended.  Carboplatin can also be used in place of Cisplatin.  Use of other drugs such as Gemcitabine and Vinorelbine can be prescribed as well.  Chemotherapy and radiation are necessary to prevent relapse and to treat the cancer cells that are microscopic and are present even after surgery.

Mesothelioma Guidelines Will Improve Treatment

The oncology practice guidelines are a result of evidence based research and are the consensus of the malignant mesothelioma panel of NCCN.  Thirty-five oncologists, surgical oncologists, radiation oncologists, pathologists and hematology oncologists participated on the panel and worked on the guidelines.  The guidelines are now available for practicing physicians, but of course each physician will use his or her best independent medical judgment to decide how to treat and care for a mesothelioma patient.

These unprecedented malignant pleural mesothelioma guidelines take medical care a big step forward in standardizing and improving the treatment, prognosis and quality of life for a person being diagnosed with mesothelioma today.  Attorney Richard DeRobertis of Galiher DeRobertis & Waxman, which has represented mesothelioma clients for over 30 years, applauds and commends the work of the many physicians and scientists in their clinics, hospitals and laboratories, “It is their hard work and years of experience that enabled the NCCN to develop these new clinical practice guidelines for malignant pleural mesothelioma.

Outstanding Mesothelioma Treatment Facilities For Patients to Evaluate

When patients receive a diagnosis of mesothelioma, it is important that they immediately investigate and evaluate the many outstanding mesothelioma treatment centers located throughout the country.  The law firm of Galiher DeRobertis & Waxman has been helping victims of mesothelioma and other illnesses caused by exposure to asbestos for over 30 years.  Over this time, we have observed an evolution of treatment for mesothelioma patients and have come to see that there are many excellent institutions and cancer centers that have made great progress in advancing treatments.  Attorney Gary Galiher remarked, “These facilities have helped many of our mesothelioma clients live longer, healthier lives, and they are continually conducting research to help bring us closer to a cure.”  Too numerous to name all of them, below is a small sampling of the many mesothelioma treatment centers that patients should consider.

City of Hope

The state-of-the-art City of Hope facilities are located in Duarte, California, on acres of beautifully landscaped gardens.  At the City of Hope, compassionate patient care is the objective.  Here, ideas and breakthrough discoveries turn into emerging new therapies of tomorrow.  The City of Hope is one of the 40 National Cancer Institute-designated Comprehensive Cancer Centers.

The University of Texas M. D. Anderson Cancer Center

M. D. Anderson is also one of the 40 National Cancer Institute-designated Comprehensive Cancer Centers.  Its slogan is “Making Cancer History.”  M. D. Anderson sits in the middle of the Texas Medical Center in Houston, Texas.  It has treated over 800,000 patients since 1944, using 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.

Memorial Sloan-Kettering Cancer Center

Memorial Sloan-Kettering Cancer Center has a team of specialists, including surgeons, medical oncologists, scientists, radiation oncologists, and pathologists, who aim to provide “experienced, up-to-date, and thoughtful care” of mesothelioma patients.

Sloan-Kettering offers its patients and their families a wide base of support ranging from clinical trials, to symptom management and even cosmetic education that help patients cope with the effects of mesothelioma.  Sloan-Kettering is one of the 40 National Cancer Institute-designated Comprehensive Cancer Centers.

The International Mesothelioma Program at Brigham and Women’s Hospital

The International Mesothelioma Program (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.

Dr. David Sugarbaker, M.D., is the founder and director of the International Mesothelioma Program (IMP)  and is the Chief of Thoracic Surgery.  The IMP focuses on the treatment and cure of mesothelioma, and it currently consults with over 300 mesothelioma patients annually and treats over 180 of these patients.   It is the largest program of its kind.

Dana-Farber is another of the 40 National Cancer Institute-designated Comprehensive Cancer Centers.  It has been dedicated to helping cancer patients since 1947.  It specializes exclusively in cancer research, care and treatment.  It aims to provide its patients with compassionate care while advancing the diagnosis, treatments, and prevention of cancer and related diseases.  Outpatient care of mesothelioma patients at Brigham and Women’s Hospital usually takes place at Dana-Farber.

Mayo Clinic

For decades, the Mayo Clinic has been dedicated to the treatment of complex illnesses, such as those caused by asbestos exposure.  It is one of the 40 National Cancer Institute-designated Comprehensive Cancer Centers.  Mayo Clinic employs over 3,000 physicians, scientists and researchers, and offers hospital services in Arizona, Florida and Minnesota.

Many patients with mesothelioma and other asbestos-related diseases are treated at the Mayo Clinic.  The Mayo Clinic’s philosophy is “the needs of the patient come first.”

Galiher DeRobertis & Waxman Supports Treatment for Mesothelioma Patients

Over the many years of representing mesothelioma patients, we have forged strong bonds with our clients and their families.  We are aware of the devastating physical, emotional and financial consequences this disease has for patients and their friends and families.  Through our work, we have had the opportunity to interact with the researchers and the treating medical professionals of these great institutions, and we are encouraged by their dedication and unwavering commitment to helping their patients and our clients live richer and longer lives.  These professionals and outstanding treatment and research facilities continue to provide us with hope that one day we will find a cure for mesothelioma.

Patient Navigators Support Mesothelioma Patients

Being diagnosed with cancer is always a devastating experience, and a mesothelioma diagnosis may be particularly overwhelming for both the patient as well as his family.  Often after hearing the diagnosis from the physician, the mesothelioma patient and his family understandably do not really hear much else.

Mesothelioma is aggressive and a multimodality approach (meaning surgery, chemotherapy and radiation) is often recommended as the course of treatment.  As a result, a patient necessarily has appointments with an oncologist, a radiation oncologist, a surgeon, a cardiologist, a pulmonologist, at imaging, at nuclear medicine and with other specialists and departments.

In order to find one’s way through this seemingly complex medical maze, forward thinking medical centers today have on staff patient navigators to assist mesothelioma patients and others facing a cancer diagnosis.  A patient navigator is a professional with medical training, sometimes as a nurse or a medical assistant.

First and foremost, the patient navigator will meet with the patient and be there to help.  She will help schedule appointments.  She will try to set appointments as conveniently as possible, perhaps limiting the number of days that a mesothelioma patient has to go to the medical center or the hospital.  The navigator also meets with the patient’s team to discuss the plan for care and treatment, as well as progress and difficulties that may develop along the way.

If there seems to be a conflict between prescriptions or if instructions are unclear, the navigator will help to straighten out the situation and provide clarity for the patient.  The patient navigator’s job is to alleviate much of the stress and concern that a patient and his family may feel when trying to navigate the system themselves. The navigator helps to ensure that the patient does not feel alone in this process.
A mesothelioma patient’s needs go beyond medical tests and treatment.  An effective patient navigator will assist with issues involving medical insurance, financial assistance, nutrition and with psychosocial problems.  When the need arises, palliative care suggestions can be provided.  Sometimes the navigator will suggest an appropriate support group.

One example of a state of the art patient navigation system is available at Queen’s Cancer Center in Honolulu, Hawai‘i.  An award winning and innovative program, the Queen’s Patient Navigation Program helps patients wind their way 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 incredibly difficult time.

Patient Praises Dr. David Sugarbaker as “The Man” at the International Mesothelioma Program

by Gary Galiher, Attorney

Dr. David Sugarbaker is a mere mortal, but to hear his patients talk about him, you might conclude otherwise.  Dr. Sugarbaker is the director and founder of the International Mesothelioma Program (IMP), a unique program at the Brigham and Women’s Hospital in Boston that is dedicated to the treatment and ultimately finding a cure for mesothelioma, a devastating cancer in the lining of the lungs or abdomen.

Many patients find their way to Dr. Sugarbaker and his team at the International Mesothelioma Program after being given a grim prognosis by their own doctor.  But Dr. Sugarbaker has designed a unique program that offers state-of-the-art treatment with the goal of improving and extending patients’ lives.  The real goal, however, is to find a cure for mesothelioma.  Dr. Sugarbaker gives his patients hope where others had given none.  It is no surprise that so many of his patients revere him, and it is no wonder that one of our clients who was recently operated on by Dr. Sugarbaker simply calls him “The Man.”

Patients Hold Dr. Sugarbaker in Highest Esteem

Our client went to the International Mesothelioma Program after hearing from his own doctors that Dr. Sugarbaker offered the best treatment available.  Our client told his friends that it was not until he spoke to a doctor at the IMP that he heard the word “survivability” in relation to his cancer.  Dr. Sugarbaker’s treatment offers hope to patients like our client who had been given very stark and grim news about his condition.

Once at the International Mesothelioma Program, our client met Dr. Sugarbaker who evaluated his case to determine if he was a candidate for the cutting edge surgical treatment protocol that Dr. Sugarbaker himself has pioneered.  After many tests and consultations, Dr. Sugarbaker concluded surgery was the appropriate treatment for our client.  Our client told his friends that he met “The Man, the program’s director, Dr. David Sugarbaker ” and went on to add…”and by the way HE IS THE WORLD’S  BEST” – his own emphasis.  Our client underwent surgery just a few weeks ago and is recovering with a degree of hope that did not exist when he first learned of his mesothelioma diagnosis.  It is easy to see why he considers Dr. Sugarbaker “The Man.”

Who Is Dr. David Sugarbaker?

David Sugarbaker is a surgeon and the Chief of Thoracic Surgery at the Brigham and Women’s Hospital in Boston.  In the early 1980s, this hospital began seeing a significant number of mesothelioma cases that were developing decades after patients had been exposed to asbestos.  Given the extensive use of asbestos in the shipbuilding industry which at one time employed thousands in the New England area, it was understandable why there was a high incidence of this cancer in New England.  Dr. Sugarbaker brought the treatment of mesothelioma to the forefront of the Thoracic Surgery Division once he became its Chief.  Under his direction, the Brigham and Women’s Hospital began to develop an expertise in the surgical treatment and chemotherapy protocols related to this disease.

As the number of mesothelioma patients coming to the Brigham and Women’s Hospital continued to increase, the number of doctors and staff dedicated to the treatment of this disease also began to grow.  In 2002, Dr. Sugarbaker had the initiative to set up a multidisciplinary program dedicated solely to mesothelioma.  The International Mesothelioma Program was born.

The International Mesothelioma Program

There is no doubt that the International Mesothelioma Program is Dr. Sugarbaker’s “baby.”  Not only has he been key in the development of the IMP’s surgical treatment options and cutting edge chemotherapy protocols, but his vision and strategic partnering has allowed the program to expand to includes doctors and researchers from across the field of medicine, all focused on finding better treatment options and ultimately a cure for mesothelioma.

Dr.  Sugarbaker’s vision for his program included not only state-of-the-art treatment, but also an environment where patients and their families receive the supportive care needed for those facing a disease like mesothelioma.  The support team that Dr. Sugarbaker has brought together includes a social worker and two chaplains who explain the array of services available to the patients and their families and help them through the process from the introductory patient orientation meeting to the day the patient heads back home.  Soon our client will be heading back home, having benefited from the vision, commitment and dedication of  “The Man.”

Paying for Mesothelioma Treatment at the International Mesothelioma Program (IMP)

Mesothelioma patients and their families face many concerns as they seek treatment for this asbestos-related disease.  In addition to the extensive number of tests and procedures that may be needed to diagnose this rare cancer, many patients are concerned about the cost.  Patients worry that they may not be able to pay for the best treatment options offered by their doctors and medical team.

Many mesothelioma patients seek treatment at the International Mesothelioma Program (IMP) at the Brigham and Women’s Hospital (BWH) in Boston, Massachusetts.  This unique program includes doctors from many disciplines, including  pathologists, surgeons, oncologists, and clinicians, all focused on finding the best treatment options and ultimately a cure for mesothelioma.  Dr. David Sugarbaker, the Chief of Thoracic Surgery at Brigham and Women’s Hospital, is the founder and director of the International Mesothelioma Program.

The entire team at the International Mesothelioma Program has dealt with issues related to the cost of medical care for many years and can help guide patients through the process.  Dr. Sugarbaker considers this guidance part of their overall mission to ensure that patients receive all of the support and advice they need at every level.

Treatment is the First Priority

The International Mesothelioma Program works with the patient’s health insurance provider to ensure that a lack of personal financial resources does not interfere with the patient’s mesothelioma treatment – whether it is surgery, chemotherapy, radiation therapy, or a combination of therapies.  There may be differences in allowable benefits among health insurance providers, including private insurers such as Blue Cross/Blue Shield PPO plans and HMOs like Kaiser Permanente, federal Medicare and state Medicaid programs, Veterans Affairs’ beneficiaries and dependents, and active duty military personnel covered by Tricare.  However, each insurer has an obligation to honor the terms and conditions of the patient’s insurance policy or plan benefits.

A Patient’s Role and Obligations

When a mesothelioma patient contacts the International Mesothelioma Program for a consultation or evaluation, the administrators at Brigham and Women’s Hospital work with the health insurance carriers or plan administrators to verify eligibility and obtain payment approvals.  To accomplish this, current insurance information from the patient as well as a referral from the primary care physician or treating doctor is needed.  In some cases, additional documentation such as a statement of a lack of necessary and recommended care at the patient’s local hospital or medical clinic is required before treatment at the International Mesothelioma Program may begin.  While the staff at the International Mesothelioma Program often deals with the insurance carrier directly, they may ask for the patient’s help to expedite matters by obtaining certain required documents or contacting the primary care physician.

Recent Patients’ Experiences

Some of the mesothelioma patients seeking treatment at the International Mesothelioma Program are represented by the Galiher law firm, a nationally recognized  Hawai‘i law firm that has handled thousands of asbestos-related personal injury claims.  Over the years, some of the firm’s clients have had surgery performed by Dr. Sugarbaker to remove the mesothelioma cancer.  Attorneys at the Galiher law firm are mindful of the importance of ensuring their health insurers work hand in hand with the IMP staff:

“We are all aware of the high costs associated with medical care and treatment, especially when surgery and hospital care are required.  The treatment which Dr. Sugarbaker and his team at the International Mesothelioma Program provides includes surgery to remove the visible mesothelioma tumor, followed by a treatment of chemotherapy drugs.  This surgery is typically followed by a few days of recovery in the Intensive Care Unit and another week or 10 days of hospitalization.  Because of the associated costs, it is important that a patient’s health insurance company and the IMP staff coordinate closely with each other.”

One such patient had private insurance while another received health care benefits through Veterans Affairs because of his military service.  Both of these patients received prior approval from the insurance company and Veterans Affairs respectively before their operations.  With all that a mesothelioma patient is dealing with, seeking pre-approval from the medical insurance carrier may seem stressful and overwhelming.  The team at the IMP has vast experience in working with the various medical insurance carriers and will lend a supportive hand so a patient’s treatment can be scheduled expeditiously, and financial concerns about insurance coverage will not be a stumbling block to proceeding.

Treating the Entire Mesothelioma Patient at Memorial Sloan-Kettering

For more than 30 years, the law offices of Galiher DeRobertis & Waxman have represented victims of mesothelioma and other asbestos-related illnesses.  Through our work, we have learned much about mesothelioma and asbestos, and over the years, we have seen significant progress in the treatment and care of mesothelioma patients.

Today, mesothelioma patients’ quality of life is greatly improving.  The institutions that specialize in the treatment of mesothelioma are not focused on just the disease itself.  Medical professionals today are increasingly focused on trying to maximize the patients’ overall well-being through a comprehensive approach to treatment.

Comprehensive Care of Mesothelioma Patients

Among the many impressive mesothelioma treatment institutions is Memorial Sloan-Kettering Cancer Center, a treatment center that believes “treating the whole person, not just the disease, is the best approach.”  Sloan-Kettering has a team of specialists, including surgeons, scientists, medical oncologist, pathologists and radiation oncologists who aim to provide “experienced, up-to-date, and thoughtful care” of mesothelioma patients.

In addition to great medical care, Sloan-Kettering offers its patients and their families a wide base of support.  Sloan-Kettering understands that the emotional toll mesothelioma can have on patients and their family members can be as traumatic as the disease itself.

Support Services at Sloan-Kettering

Sloan-Kettering offers a significant array of support for its patients.  The following are some services that are provided for mesothelioma patients at Sloan-Kettering:

•    Inpatient Counseling & Support Groups

Sloan-Kettering understands that there is no “one-size-fits-all coping style” when it comes to dealing with cancer.  Therefore, there are experienced counselors at Sloan-Kettering that are made available to all patients to help them handle any distress they may develop.

•    Outpatient Counseling

Outpatient counseling at Sloan-Kettering is offered to cancer patients regardless of whether or not they are receiving care at Sloan-Kettering.

•    Nutrition

At Sloan-Kettering you can request to meet with a certified dietitian-nutritionist who can help you assess certain diets and who can help you eat properly while undergoing treatment.  If loss of appetite is a problem, the dietitian can make suggestions of foods necessary for nourishment and energy.

•    Symptom Management and Support

Sloan-Kettering is dedicated to ensuring that all its patients do not suffer from avoidable discomfort.  If a patient is experiencing pain or other symptoms from treatment, Sloan-Kettering has created a Pain and Palliative Care Service that offers help with physical symptoms such as shortness of breath or nausea but also non-physical symptoms such as sadness, anxiety or depression that can lead to pain.

•    Extra Help At Home

Sloan-Kettering recognizes that after a patient is released, they may need further assistance or they may need certain equipment at home.  Therefore, Sloan-Kettering has case managers who are available on each floor that will help patients get the care and supplies they need.

•    Complementary Therapies

Therapists in the Integrated Medicine Service create services that complement your treatment and are targeted to help the spirit, mind, and body.

•    Patient-to-Patient Volunteers

Sometimes nothing can be more comforting to a mesothelioma patient than talking with someone who has been through what you are currently experiencing.  Sloan-Kettering attempts to match patients with other patients who have been through a similar experience.

•    Patient Representatives

Patient Representatives are available at Sloan-Kettering.  They can help you with any complaints or concerns you may have.  They act as your advocate to ensure that your rights are respected and any concerns you may have are addressed.

Better Treatment for Mesothelioma Patients

Over the years, the law firm of Galiher DeRobertis & Waxman has worked with many researchers and medical professionals who have made great progress in their search for better treatments and, ultimately, a cure for mesothelioma.  Attorney Ilana Waxman says, “we are pleased to see institutions such as Sloan-Kettering focusing on improving the quality of life of mesothelioma patients, not just focusing on treating the disease.  These relatively new approaches to treating the entire patient will no doubt continue to expand and will allow mesothelioma patients to have a higher quality of life while dealing with this disease.”

Coping with Mesothelioma in 2010

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.

Electronic Medical Records May Help In Treatment of Mesothelioma

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.

International Mesothelioma Program (IMP) Provides Support for Mesothelioma Caregivers

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.