Being diagnosed with mesothelioma is understandably a frightening and stressful time for patients, their families and loved ones.  Besides coping with medical issues and treatment plans, there are a myriad of practical matters to consider.  One of the most pressing issues is deciding what to do about accommodations when it becomes necessary to travel to a medical center in a distant city, especially if for an extended period of time while undergoing testing, surgery, and other treatment and follow-up care.  The cost of hotel rooms, even at special “medical rates,” can mount quickly, especially when the visits are frequent or prolonged.  Dr. David Sugarbaker, the director and founder of the International Mesothelioma Program (IMP), and his entire team have made it part of their mission to address this concern for the patients they treat.

“The House”

There is a wonderful place right across the street from the main entrance to Brigham and Women’s Hospital (BWH) in Boston, Massachusetts, affectionately referred to by mesothelioma patients and their families as “The House.”  It is a haven of sorts, a place where patients and their families can live while they are in Boston undergoing treatment at the International Mesothelioma Program, and they soon find that it offers far more than shelter.

Attorney Gary Galiher recently met with Dr. Sugarbaker and other doctors and researchers at the International Mesothelioma Program and had the opportunity to visit the “Meso House,” as it is fondly referred to by many patients and families.  The house is a Boston triple decker located at 48 Francis Street.  The 4,400 square foot house is owned by the hospital and, after renovation and remodeling, opened in the summer of 2008.  The families of mesothelioma  patients who are undergoing treatment can stay there for a modest donation of $30 per night.  It is expected that they will stay for two weeks or more, before, during, and after mesothelioma surgery.  Gary Galiher had high praise for the house:

“The House is extremely comfortable and convenient for the patients and their families since it is right across the street from the entrance to the hospital.  It is very nicely decorated and has a full kitchen with everything the families need to prepare their meals.  One of our clients has been there for over three weeks now.  He and his wife feel as though it’s a ‘home away from home’ for them.”

Each of the three floors accommodates three families, except the first floor which accommodates two.  Each family has its own fully furnished bedroom.  They share a comfortable living room, as well as a walk-out back deck with table and chairs and a fully equipped kitchen with all major appliances.

The “Instant Support System”

Here families and patients have a chance to meet each other and to share their experiences.  On-site housing coordinator Cristin O’Rourke calls the house “an instant support system.”  Wives get together at the end of the day.  People who are going through the same thing meet, encourage, and support each other.  This is a time that can be lonely and frightening.  Here, some of the burdens are lifted, the load is made lighter, and the sense of isolation is replaced by a sense of connection and shared bonds.

Attorney Gary Galiher found that, “Our client and his wife have become very close to the other families with whom they share the house.  Theirs is a unique experience and one these families and caregivers so intimately understand.  Each family has a sense of what the other is going through and provides a special kind of support.”

Families can take meals together and relax in the living room.  They can retire to the peace and privacy of their quarters for needed rest.  It offers respite for caregivers, who often find that their responsibilities are now 24/7, as they gather at the end of the day, perhaps just to share a moment or two with someone who knows what they are going through.  The journey is a long one, but it need not be taken alone.  They have friends.  People care.  And their medical team is right across the street.  Its team members are part of “The House” too, as its nurses, counselors, chaplains, and social workers cross Francis Street, seeing to the care of their patients and their loved ones.

A Beautiful Home

“The House” is not merely a house, it is a beautiful home for patients and families, many of whom find themselves far away from their own homes in a strange city with very cold winters.  “The House” thus becomes a haven, a place where the emotional support and care of those it shelters is  paramount.  The on-site housing coordinator, Cristin O’Rourke, is there to look after the guests’ needs and to help with their concerns.  Upon arrival, each family is given a “resource packet,” which has helpful information on an array of subjects, including information about the city, transportation, the location of pharmacies, worship, and entertainment.

For reservations, contact social worker Charlene Haouiliya at (617) 732-5500, ext. 32819.

Mesothelioma Researcher in the U.S. and in Italy

Dr. Michele Carbone

Dr. Giovanni Gaudino began his collaboration with Dr. Michele Carbone at the Cancer Research Center of Hawaii (CRCH) in early 2008.  Since then, he has been to Hawaii three times, each time taking what he calls “short sabbaticals” from his teaching and research duties in Italy.  While in Hawaii, he has had the opportunity to appreciate the good work of the scientists and the wonderful progress that has been made at the Center.  He and Dr. Carbone are working on finding ways in which they can collaborate even more.  Today Dr. Gaudino is now on the faculty of the Cancer Center as a Professor of Research.

In Dr. Gaudino’s view, it is not easy to run a top-level cancer center in the United States.  It is much more competitive in the United States than in Europe.  Here the universities and the cancer centers are very open to foreigners, and they hire the best scientists from all over the world.  For this reason, the best work and publications and clinical trial results are coming from this country.

Dr. Gaudino also enjoys Hawaii.  It is a beautiful place, of course, but the most important part of his experience here has been what he calls “the human environment,” the friendliness of the people, the Aloha spirit, which he says reminds him of the Mediterranean area.

Mesothelioma Research Requires Collaboration

“I have to say that for any kind of cancer, this collaboration, which is going [on] here, …is, … the only way to proceed, and so I’m very, very glad that it’s here.  The Cancer Center is doing so well.” – Giovanni Gaudino

In Dr. Gaudino’s experience, there is very good collaboration between the scientists at the Cancer Research Center of Hawaii and the clinicians and hospitals in Honolulu.  He feels that the Cancer Center has the potential to develop a network even better than that which they have developed in Italy.  His colleagues, the basic scientists, are working hard to develop new therapies, and their communication with physicians is very good.  The work is very promising and offers much hope to mesothelioma patients.  Dr. Gaudino believes that this collaborative approach is the only way to proceed, whether it concerns research for mesothelioma or for any type of cancer.

The Winning Mesothelioma Research Team

“… every scientist is convinced that his own work is the most important…And this is understandable.  But it’s not true…So,…the winning team is the team made of many different persons sitting around the table and trying to argue, and trying to demonstrate that his own point is the best.  But this is the way things can be done.” – Giovanni Gaudino

Dr. Michele Carbone, the director of the Cancer Center and a well-funded mesothelioma researcher, believes that the multidisciplinary approach to cancer research is the only way to win the battle, and Dr. Gaudino agrees with him 100%.  Only by scientists from multiple disciplines – molecular scientists, immunologists, epidemiologists, and physicians – coming together to share their views will the goal be reached in a fast, efficient way.  This is the only way to get things done.  These scientists, from their varied disciplines, make up the winning team to improve treatment of mesothelioma patients with the goal of prolonging lives.

Working Toward A Cure for Mesothelioma

We hope you have enjoyed your visit with Dr. Giovanni Gaudino, our Visiting Scholar at the Cancer Research Center of Hawaii, as much as we enjoyed the time we spent with him.  We hope this presentation has informed, inspired and encouraged you, and that you have been reassured that you are not alone in this battle.  Scientists and researchers from around the world and from multiple disciplines are collaborating with each other and with clinicians and other physicians to develop new therapies for mesothelioma patients, and in “working towards a cure,” to improve the quality of life for those who suffer from this disease as a result of exposure to asbestos in their work or other environments.

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.

The Importance of Clinical Trials

Many of us know that malignant mesothelioma is very difficult to treat.  Dr. Giovanni Gaudino, the prominent Italian medical researcher, talked to Galiher DeRobertis Ono 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.

Dr. Giovanni Gaudino is an Italian biochemist and molecular biologist who researches the molecular mechanisms of asbestos and its relationship to the development of mesothelioma.  Attorney Gary Galiher had the privilege of interviewing this humble and dedicated scientist.  His interview appears on our website in a series.  This is the fourth video in the series.

Well known approaches to cancer treatment include surgery, radiation therapy, chemotherapy, immunotherapy, and chemicals.  All of these conventional therapies have been and are still being used to treat mesothelioma.  While some of these approaches have been successful with other solid tumors, unfortunately, this has not been the case with mesothelioma.

“All these agents can kill cells. . . .  Unfortunately, this is not true for mesothelioma, because, as I say, it is a very resistant tumor to … conventional therapy.  So, because of that, we try to find … new therapeutic approaches.” – Giovanni Gaudino

One of these important new approaches is aimed at overcoming chemoresistance and interfering with cell survival.

Overcoming Chemoresistance

Scientists like Dr. Gaudino have been studying how mesothelioma cells develop; in other words, what has gone awry in the normal cell life of growing, maturing and then dying off.  Dr. Gaudino points out that the growth signals that lead to cancer cell proliferation and neoplastic transformation are the result of a series of biochemical reactions that start at the cell’s surface and move down in a multi-step process called “receptor downstream signaling.”  This continues until the signals reach the nucleus of the cell and their final destination, which is the DNA.  The DNA is the “port master” of all that is going on in the cell.  The “big button” on the top of the cell membrane is called the “Receptor Tyrosine Kinases.”  It mediates the process by which cells become resistant to cell apoptosis, or what is known as “programmed cell death.”  Apoptosis is a normal process of getting rid of old cells.  In an average adult human, 50 to 70 billion cells die every day as a result of apoptosis.  In patients with mesothelioma as well as other cancers, there is insufficient apoptosis, and there is cell proliferation of abnormal cells.

“So the rationale of our work was that the Receptor Tyrosine Kinases, which is the big button that you see on top of the handle of the cell membrane, can be a good target, and by inhibiting [the] receptor downstream signaling . . . we could get rid of the tumor chemoresistance.” – Giovanni Gaudino

The purpose of the drugs used to target this button, then, would be to interfere with cancer cell survival and chemoresistance.

Cell Survival

There are many different molecules involved in cell survival and apoptosis.  These molecules are on the surface of the cell, in the interior of the cell, and in the nucleus.  These molecules all have names so that they can be identified.  Thus, if someone is exposed to asbestos, this toxic exposure combines with genetic factors and many other different reactions.  These different reactions are all pathways that determine cell survival and the transformation of normal tissue to tumor cells which results in cancer, in this instance, malignant mesothelioma.

“And, cell survival is a very important step for a cancer, because if [a] cell can survive despite all the DNA mutations, the DNA damage they suffer, it means they have a good chance to become tumor cells and to .. [become] cancer.” – Giovanni Gaudino