2008 International Symposium on Malignant Mesothelioma
Hosted by the Mesothelioma Applied Research Foundation (MARF)
The Mesothelioma Applied Research Foundation is the nonprofit collaboration of patients and families, physcians, advocates, and researchers dedicated to eradicating the life-ending and viscious effects of mesothelioma.
The 5th Annual International Symposium on Malignant Mesothelioma was held in the Hyatt Hotel in Washington, DC from June 26 - 28, 2008. Each day focused on a different aspect of eradicating mesothelioma: advocacy, science, and community. Jessica Like, executive director of the Pacific Heart, Lung & Blood Institute, offers summaries and her own input below. For more information, visit MARF's website at www.curemeso.org.
Agenda Schedule
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As presented June 26, 2008: Advocacy Day
Nicholas Vogelzang, MD, Nevada Cancer Institute & Chairman of the Meso Foundation Board of Directors
Welcome
Dr. Vogelzang has been lending his expertise to the Meso Foundation since its inception and started the 6th Annual Symposium by welcoming the many patients and their families, scientists, doctors, and advocates to Washington, DC. He reminded the attendees of the power of a collective voice to move advocacy and research forward, inspiring the group to believe in a world without mesothelioma.
Dr. Nicholas Vogelzang, Chairman of MARF's Board of Directors
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Chris Hahn, Executive Director of the Meso Foundation
Orientation: Effective Advocacy and the Case for Federal Meso Research Funding
Chris is the Meso Foundation’s first Executive Director. He has helped grow the Foundation along with a great staff. With a hearty welcome to the attendees, Hahn quickly gave an overview of the purpose behind advocacy and how to effectively lobby. Some main points included:
- Share your personal story
- Discuss the need for research funding
- Explain that only when asbestos is banned can disease be completely prevented
What followed was a crash course of the use of asbestos in the United States, beginning with the Industrial Revolution onwards to its increasing prevalence in the 1970s. At that time, the EPA never effectively banned asbestos but instead began to regulate its use. But even with regulation, there are many examples of disregard for human health in the US’s history of asbestos.
Many are familiar with the disaster in Libby, Montana where W.R. Grace mined naturally occurring asbestos, known as vermiculite. This asbestos was used in potting soil and other products which were shipped over the entire U.S. W.R. Grace covered up their work for decades and the effect ravaged the city and continues to plague residents and those who traveled through.
Hahn also sited the World Trade Center collapse that released approximately 1,000 tons of asbestos into the air. One full tower was completed inundated with asbestos and half of the other tower. After the collapse the EPA wrongly released that the air levels were safe. However, when appropriate sensitive methodology was used to test the air quality, levels twice the acceptable amount of asbestos was found. Many of those who were exposed at the time are already developing related illnesses, many more will continue to surface.
Offering a brief history on the ban asbestos legislation, Hahn explained that in 2001, Senator Patty Murray approached MARF to write the legislation for a ban asbestos act. Working with experts, MARF crafted language to call for a complete ban as well as needed research funding to cope with existing disease. Language included $1 Million per year to be given to centers of excellence for meaningful clinical research.
A few years later, different legislation (known as the FAIR Act) was crafted to set up a trust fund for victims of asbestos but no money would be set aside for research. This legislation did not pass.
By 2007, the original language MARF helped craft gained traction and was passed through the U.S. Senate unanimously in October 2007. However, changes were made including language tweaks which would allow 1% of asbestos by weight to be used in products.
Over the next months, Hahn recognized the efforts of ADAO, the AFL-CIO, and specialists such as Aubrey Miller, Dr. Michael Harbut, and Barry Castleman, who helped push for new language in the Ban Asbestos Act. What resulted was a ban that successfully calls for a complete ban. Currently, the U.S. House of Representatives is reviewing this bill, known as the “committee print.”
See Hahn’s chart outlining differences in the legislation.
Afterwards, attendees met with their Representatives asking for their support of the committee print version. Thursday afternoon, attendees met with their Senators thanking them for their support and again asking for their support to agree to the ban that the House will approve later this year so that the ban may move forward to the President quickly.
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Chris Hahn, Executive Director of the Meso Foundation
Lexi Miletto, granddaughter of Joseph Miletto who succumbed to peritoneal mesothelioma
Taylor Stoeckler, 15 year-old daughter of Chris Stoeckler who succumbed to mesothelioma
Julie Gundlach, a 35 year-old mother battling peritoneal mesothelioma
Press Conference
A powerful panel of speakers with different viewpoints on the tragedies of how mesothelioma affects individuals and families gathered on Thursday afternoon. Chris Hahn opened the press release explaining the importance of advocates (doctors, researchers, and most importantly, patients and families directly impacted by mesothelioma) to ban asbestos and fund mesothelioma research.
Lexi Miletto speaks at the press conference
Lexi Miletto, a very composed and well-spoken 7th grader spoke about the loss of her grandfather, “Pop-Pop” to a preventable disease. She called for a ban on asbestos and the need to earmark research funding.
Taylor Stoeckler recalled the loss of her father and how deeply he is missed. She could not keep back the tears as she spoke about the tragedy of loosing her father, an advisor, caregiver, and protector. She regrets the fuss she once put up when he wanted her to work on a project with him (as all teenagers remember) and how she would give anything to willingly be by his side while tinkering on different projects around the house. Taylor said, “Everyone deserves a father,” and asked the government to stand behind the ban asbestos act.
Julie Gundlach followed with her experience battling peritoneal mesothelioma and the knowledge that she might not see her 5 year old grow up. Gundlach has traveled to New York City 22 times for treatment with Dr. Taub. She is frustrated that the government does not want to tell the truth about asbestos, and she vowed to raise her voice about this issue as long as she can.
See the full press release.
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As presented June 27, 2008: Science Day
Session I: Peritoneal Mesothelioma
Robert Taub, MD, PhD, Columbia University
Intracavitary Chemotherapy for Malignant Mesothelioma
Dr. Taub has been at the forefront of developing better treatments for both peritoneal and pleural mesothelioma. Dr. Taub’s team has treated over 120 patients for the past ten years using a protocol that includes surgery debulking (laparotomy, omentectomy, and cytoreduction), insertion of a catheter for 12 infusions of chemotherapy, followed by a second laparotomy and further hyperthermic intraperitoneal chemotherapy, finished with abdominal radiotherapy. The median overall survival was 70 months.
Dr. Taub further noted that multimodal treatment (surgery plus chemo plus radiation) “is necessary to eradicate mesothelioma or lead to a quality prolongation of patient survival.” He also suggested that two operations to reduce tumor may be more effective than one initial surgery.
From Left to Right: Dr. Robert Taub presenting, Dr. Raffit Hassan (Chairman of MARF's Scientific Advisory Board)
During the Q&A panel following Dr. Taub’s discussion, he was asked about the possible progression of epithelial cells into sarcomatoid cells. He responded that it is not common for cells to change from one type to another, but what is necessary is the need for large tissue samples during biopsy to determine the extent of cell types.
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James Pingpank, Jr., MD, National Cancer Institute
Analysis of Survival in 101 Patients with Malignant Peritoneal Mesothelioma Undergoing Systematic Surgical Cytoreduction, Continuous Hyperthermic Peritoneal Perfusion (CHPP) and Early Post-Operative Intraperitoneal Chemotherapy
Similar to Dr. Taub’s presentation, Dr. Pingpank shared results from a recent study where patients underwent surgical resection followed by heated chemotherapy at 42-43 degrees Celsius pumped through the body for 90 minutes. Overall survival of patients was approximately 40 months.
The NCI learned that mesothelioma can be controlled through treatment of regional therapy. However, patients should be identified for high risk early disease recurrence in order to determine chemotherapy’s role as treatment.
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Session II: Pleural Meso Surgical Options
Raja Flores, MD, Memorial Sloan-Kettering Cancer Center
Surgical Options for Treatment of Malignant Pleural Mesothelioma
Dr. Flores discussed the wide range of treatment options from the highly radical extra pleural pneumonectomy (EPP) which removes the affected lung to observation alone. He also clarified the way data is compiled in research studies so that patients may better understand this information when making decisions about treatment.
Initially, Dr. Flores discussed the different ways that research studies track survival, beginning either at the time of diagnosis or when symptoms began (which might have been years before a firm diagnosis is made). He cautioned individuals to find out which of these methods a research program with long survivals is using. Furthermore, a problem with older studies is the lack of a CAT scan and no staging system. In older research studies, late stage patients were grouped with early stage. Often, because CAT scans were not used, tracking of disease progression was inadequate. Dr. Flores explained the need to further stratify mesothelioma cases by their proper pathology, separating the epithelial type (which has better responses to treatment) from sarcomatoid type (which is more aggressive).
From Left to Right: Dr. Raja Flores presenting, Dr. Robert Kratzke, Dr. Raffit Hassan (Chairman of MARF's Scientific Advisory Board)
He added that any doctor who does not refer a patient to see a specializing surgeon is clearly not familiar with the results that surgeons obtain. The medical community still has a misconception about the mortality related to radical surgery which is no longer the case. Again, the poor survival rates were linked to patients at all stages and cell types lumped together. Mortality rates were once at 31% for EPP decades ago but are currently less than 5% now, another reason to reevaluate the need for surgical management.
Dr. Flores reviewed the staging system frequently used for mesothelioma now. PHLBI has this information available at: http://phlbi.org/meso_faqs.asp#4
After explaining how to better understand research results, Dr. Flores explained the way he determines which surgery a patient should undergo. Though a PET/CT scan is the best tool to determine the activity in the chest, this test is often inaccurate. Therefore, a surgeon does not always know what is involved until the surgery begins, “You have to pop the hood to see what’s inside.”
For tumors that have formed in the fissures of the lung, which is advanced, Dr. Flores performs the EPP surgery, a procedure which usually involves an “en-bloc resection of the lung, pleura, pericardium, and diaphragm.” However, if the tumor has not progressed that far, he performs the pleurectomy with decortication (P/D) which “involves resection of the parietal and visceral pleurae, pericardium and diaphragm when necessary while sparing the lung.” Both surgeries aim to remove gross disease or in other words, provide a complete response (as opposed to chemotherapy which cannot achieve such a response).
Speaking clearly and precisely, Dr. Flores inspired hope in the attendees by showing that in a recent study, 31 patients survived 51 months. Furthermore, Dr. Flores reported on the recent success of the P/D. In a new clinical trial, patients at Sloan-Kettering may undergo neoadjuvant therapy followed by the P/D or the EPP (a new choice where the EPP was previously the only option).
See Dr. Raja Flores' recent publication comparing the P/D and the EPP.
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Robert Kratzke, MD, University of Minnesota Medical School
Post-Operative Intrapleural Chemotherapy for Mesothelioma
Dr. Kratzke believes that though trimodal therapy for mesothelioma (which usually includes some combination of chemotherapy, surgery, and radiation) may offer the best survival rates, there are still limitations. His research is investigating the role of hyperthermic intracavitary chemotherapy.
Intracavitary chemotherapy allows for the chemotherapy to be directly administered to the cancer cells maximizing its efficacy and limits the toxicities (which lead to side effects). Hyperthermia is believed to increase the effectiveness of chemotherapy.
Alimta (pemetrexed) is the chemotherapy being used in this research because it is highly soluble, has a short half-life, and is stable at high temperatures (42 degrees Celsius) while delivering a 41.3% response rate for those with unresectable disease.
Animal studies show potential benefit. Hyperthermic chemo may be given during surgical resection or with a VATS infusion which is currently a new clinical trial available at the University of Michigan.
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Session III: Emerging Therapies
Anne Tsao, MD, MD Anderson Cancer Center
Identifying New Targeted Therapies for Malignant Pleural Mesothelioma
Dr. Tsao discussed some of the current research at MD Anderson Cancer Center in Houston, TX. Some of this research includes the archival tissue bank which is collecting clinical data for specimens from 89 patients, including tumors, serum, and plasma. Malignant pleural mesothelioma cell lines and mesothelial tissue lines have also been obtained from outside labs for research.
This data will be used in ongoing research testing chemotherapies. Because mesothelioma causes abnormal capillary growth in the body and has poor lymphatic drainage, chemotherapies have not been highly successful. The combination of Alimta and Cisplatin give the highest efficacy for patients with survival averaging 12.1 months. But research into a drug known as AZD2171 appears promising as does a clinical trial which will follow patients who undergo either a pleurectomy with decortication or the extra pleural pneumonectomy, followed by radiation and adjuvant chemotherapy if needed. This trial pursues the most aggressive treatment approach. Research into biomarkers is also ongoing.
Of interest to patients on Medicare, Dr. Tsao reported that Medicare is no longer paying for PET/CT scans; therefore MD Anderson will incorporate the PET/CT scans into their clinical trials.
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Steven Albelda, MD, University of Pennsylvania Medical Center
Tumor Immunology and Immunotherapy
Dr. Albelda discussed the underlying problem of tumor development which is that the “tumor tricks the body into accepting it as ‘normal,’” which is due in part to the proteins which tumors have that prevent the body’s immune system from recognizing them as foreign and dangerous.
To combat this situation, chemotherapy can be used, but Dr. Albelda prefers finding a gentler system to treat mesothelioma, a system that uses the immune system. One approach is to inject the immune system with interferon which alerts and stimulates the immune system while killing the tumor cells. This could be accomplished by injecting an adenovirus into the tumor. This gene therapy halts tumor development in three different areas:
- Directly prevents tumor cells from surviving and dividing.
- Activates the body’s natural immune responses
- Decreases blood supply to the tumor by preventing blood vessel formation (a process known as anti-angiogenesis)
Clinical trials testing this gene therapy are already underway. The interferon injection is inserted into the pleural space. Ten patients received a single dose and 13 received multiple doses of the injection. Patients reported minimal side effects and more than one third had a favorable response. Further clinical trials are scheduled to open at the Mayo Clinic at the end of 2008.
Further therapy targeting mesothelin are also underway. Mesothelin is a protein often expressed on mesothelioma cells and using a specific antibody combined with a deadly poison, new therapies may be able to directly target mesothelioma cells. In contrast, chemotherapy agents often kill healthy cells along with cancerous cells. Dr. Albelda pointed out that a new anti-mesothelin monoclonal antibody known as MORAb-009 may be particular useful and works similarly to the drug Herceptin, which has been a break-through drug for breast cancer treatment.
Currently in clinical trial is a mesothelin tumor vaccine known as CRS-207, which “literally ‘vaccinates’ the body against the mesothelioma tumor.” Results are not yet published.
Overall, Dr. Albelda believes immunotherapy for mesothelioma is very promising currently and future trials will be combined with existing therapies such as Alimta/Cisplatin chemo. However, patients must be willing to participate in these trials in order to determine their efficacy. For those who want more information on this research, please contact the Meso Foundation.
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Session IV: Optimizing Patient Care
Mary Hesdorffer, MS, APRN, Medical Liaison for the Meso Foundation
Optimizing Patient Care
Mary Hesdorffer answers patient questions and puts patients in contact with treating specialists around the nation through the Meso Foundation. Previously she worked as a nurse for Dr. Robert Taub before joining the Foundation full time.
Hesdorffer’s advice for patients begins with decision making. The patient should always make the ultimate decision regarding treatment, though responsibility is shared with family and caregivers. Good decision making occurs in a non-stressful environment with proper information and expert guidance from a specialist. Patients with mesothelioma are burdened with finding correct information about their treatment options along with other burdens such as traveling to unfamiliar areas.
A medical team can prepare the patient for making complex decisions by properly educating the patient and dispelling any improper info the patient may have heard. Mesothelioma experts can also balance the correct amount of hope and truth when discussing treatment and prognosis. Experts can also make recommendations for the best treatment even if it is to see different specialists.
When discussing treatment options, patients should be aware of how best to communicate with the doctor, such as using consultation time to have a long, frank discussion with their doctor because the physical consultation can often be a minor part of guiding treatment. Patients should also be prepared with facing the time trade off dilemma whereas some treatments may give more quantity but less quality or vice versa.
Hesdorffer suggests that “one right” answer may not exist, but a good plan should be developed and decisions should be set within a reasonable timeframe.
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As presented June 28, 2008: Community Day
Chris Hahn, Executive Director of the Meso Foundation
The Meso Foundation and Our Work: Targeting a Cure
Chris Hahn, executive director of MARF
Chris Hahn’s dedication to the Meso Foundation began in June 2000 as he became the first executive director and only staff member. The Meso Foundation remains the only independent program supporting mesothelioma research in the U.S., granting competitive awards based on merit. To date, MARF has given over $5 million in research grants designed to be seed funding for 51 projects.
MARF serves the mesothelioma community through research funding and also through advocacy, raising awareness about the dangers of asbestos and the social neglect of mesothelioma. MARF’s message focuses on changing the individual’s victimism to activism by taking control of the situation and creating something good for others.
Additionally, MARF provides education and support for patients and families through their website, online community, and the annual symposium. MARF focuses on a clear, level playing field with the goal of transparency in their efforts. Hahn reminds the attendees that MARF is a non-profit and answers to the community, not to share holders.
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Activism: Volunteer Breakout Sessions
Chris Hahn, Executive Director of the Meso Foundation
Advocating for Change – Using Your Voice & Story to Cure Meso
In an informal discussion, Chris Hahn led a Q&A with attendees gathering helpful info on how to raise mesothelioma awareness. Suggestions on how to raise awareness included:
- Use your personal story to inspire activism:
Contact the media (news story, letter to the editor, public service announcements) with your personal story which might have been serving the U.S. in the Navy and how you later developed mesothelioma. Explain that you are one of thousands of sailors who served the Navy and were exposed to asbestos. Then broaden the story further to include the facts about asbestos and asbestos-related disease.
- Participate in local health fairs and community events:
Make your own poster and ask for MARF brochures to hand out at the event and educate the attendees.
- Contact local unions and organizations affected by meso
- Distribute literature to physicians and at-risk groups
- Participate in the Action Alerts sent out
- Email and phone Federal and Local Representatives
- Sign petitions
- Meet with politicians
- Use contacts and individual relationships to build awareness
- Take advantage of special days to raise awareness in the community. PHLBI suggests the following to start:
- April 1: Asbestos Awareness Day
- April 1 – 7: Asbestos Awareness Week
- April 28: International Workers Memorial Day
- September 1: Labor Day
- September 11: Remembrance of the World Trade Center
- September 23: Mesothelioma Awareness Day
- November: National Lung Month
From Left to Right: The Losch Family, Latantya Manuel (MARF Director), The McNamara Family
For more information, visit the Mesothelioma Applied Research Foundation at www.curemeso.org.