Santa Barbara, CALawyers and Settlements spoke to Mary Hesdorffer, Nurse Practitioner and Medical Liaison for the Mesothelioma Applied Research Foundation. The Meso Foundation funds research on mesothelioma, the incurable cancer caused by exposure to asbestos. In addition, a major part of the organization's energy goes into providing a wealth of support for those afflicted and their caregivers.
LawyersandSettlements (LAS): What is your role as Medical Liaison?
Mary Hesdorffer (MH): It is my responsibility to see that our patients are aware of all the options available to them based on the stage of their disease and histology [the microscopic study of tissue and cells] as mesothelioma has three different histology, all of which impact survival differently.
It is crucial that I remain current, so I volunteer one day per week at John Hopkins Medical Institution where I see mesothelioma patients.
LAS: On any given day, how might your interactions proceed?
MH: Today, for example, I got a phone call from a patient who had received information on a treatment and wanted to know if it could be possible for him. We discussed the research and he understood it wasn't applicable. Then there was an email from the family of someone in Colorado that I treated for seven years in New York. The person was in the active stages of dying and wanted to make sure they'd exhausted all possible options. After that, I was in touch with the Southwest Oncology Group, which is a consortium of hospitals that have recently developed a mesothelioma task force to develop research protocols and focus on increasing accrual to clinical trials. All that before 10 am this morning.
LAS: How do you take a patient from diagnosis to treatment?
MH: A new patient will call me and needs to know where to go, who to see. [Perhaps] the newly diagnosed patient has just been told that they have a fatal disease by someone who has had little or no experience treating this disease so they are not introduced to the possibilities and extended survival from some of the new therapies that are being studied.
I make an assessment by phone, considering what stage they're in: is it one lung or two lungs, is it the aggressive type. Then I make a decision.
If it's operable, they are sent to surgery for consultation. With any rare and aggressive form of cancer, consultation with a specialist can greatly impact survival. They might be offered the FDA approved Alimta/Cisplatin combination plus an additional agent being studied or a new drug under investigation.
If they are surgical, the best survivals in all cancers are with surgeons that perform these operations frequently and understand their disease. In many cases, you have this one opportunity that means the difference between life and death.
If they're not operable, we discuss clinical trials. If they don't see a specialist, they are offered the standard of care Alimta/Cisplatin, which extends survival from 9.2 to 12.3 months.
When more than one option of the treatment has been offered, I tell them how to make a decision and why they've been offered certain treatments, its risks and benefits and what they hope to gain.
LAS: What state of mind is the patient in, at this point?
MH: Very upset. At first when they're diagnosed they're told they have life expectancy of 9-12 months. Many local oncologists are not willing to treat them. If they don't see that many of these patients, and it's a disease that's not treatable by chemotherapy alone, and then it's not curable, why bother. That's hard to take for a patient.
LAS: Why so little concern?
MH: In contrast to other cancers that have various approved treatments, only one exists for mesothelioma--the Alimta/Cisplatin regiment. It is such a rare disease, striking so few people: 250 per year in peritoneal (abdominal) and 2,500 in pleural (chest).
LAS: How does its rarity affect the finding of a cure?
MH: It is so rare that if you just look at the economics of pharmaceutical companies, they're not going to make huge profits. That's where the Foundation steps in and funds research. That's why the Foundation is so necessary.
LAS: What kind of support do you offer once the patient has made their decision?
MH: We provide peer support where patients are connected on our website bulletin board, which is the email communication room for the Foundation.
I will buddy them with a similar patient who has been through the same treatment. This can be by phone contact for patients who don't have email or would prefer to speak directly to other patients.
I also continue to speak to them. If things are smooth, I may not hear from them for months, but if the treatment doesn't work, they call back. At this point I refer them for clinical trials.
LAS: What facilities would you direct them to?
MH: Some institutions that have mesothelioma programs and conduct trials are: NYU School of Medicine, Memorial Sloan Kettering, National Cancer Institute, Columbia University, Nevada Cancer Institute, University of Chicago, University of Pennsylvania, and John Hopkins Medical Institution in Maryland.
LAS: That sounds like an added burden for the families.
MH: There's lots of travelling back and forth. I know of one wife who recalled making 50 trips to New York back and forth in a three year period for treatment. It's a very difficult process, and few experts, few options and survival can depend on distant center with expertise. There's the cost of meals, flights, caring for parents and kids back home and leaving their entire support system at home.
For patients who are financially in arrears, we have a family fund which provides a $1,000 stipend to consult a specialist. In addition to the referral, I assist in finding hotel accommodations and flight assistance. It's so important for us to supply this support.
LAS: What is the hardest part for patients?
MH: It's so frightening. It's different than if you ended up in the hospital because of an accident. You need to gather the necessary information and travel away from your comfort zone and are faced with choices that prolong survival but are not curative. But you have to make a choice, and that's a very scary thing for a patient.
LAS: Can you describe the treatment?
MH: If it's pleural, meaning one lung involved and no lymph, they'll use extra-pleural pneumonectomy. In this procedure, the lung and tissue surrounding the lung, the heart and the diaphragm are removed with chemotherapy that is given either before or after the procedure. Radiation therapy is also given to prevent local recurrence.
After that, there's physical therapy to recondition the patient to breathe with just one lung. This is, again, not curative; it is an attempt to prolong survival.So you can imagine being presented with this treatment and knowing there's no cure.
In abdominal mesothelioma, they open the abdomen and remove as much disease as possible. Chemo is given directly into the abdomen as a heated profusion. That can also be followed by nausea and vomiting.
LAS: Are you at all involved in the research aspects of the Meso Foundation?
MH: I am deeply involved in the grants program which also gives me access to the thought leaders researching this disease.
LAS: The Meso Foundation offers a very unique opportunity to put a human face on science.
MH: We have a yearly symposium where we bring together basic scientists, clinicians and patients to discuss the latest developments and provide an opportunity for socialization with mesothelioma patients from around the world.
This is a unique opportunity as scientists are able to put a face to the disease they are working on and patients are empowered by being able to speak directly with these brilliant individuals who are devoting their careers in a search for a cure.