Mesothelioma: A Patient’s Road Map

September 15, 2010

Patients diagnosed with mesothelioma find themselves at the beginning of a journey. Because of the rarity of the disease and the developing nature of the treatments, it is a journey that will take them on sparsely-traveled, out of the way back-roads. The kind of roads that are often difficult to navigate. Difficult, that is, unless you have a good road map.

The Pacific Heart, Lung & Blood Institute (“PHLBI”) has assembled a new brochure entitled: Mesothelioma: A Patient’s Road Map to help mesothelioma patients navigate the many roads before them on their journey to proper diagnosis, treatment and coping with their disease.
 
As you may know, PHLBI is a non-profit medical research organization focusing on the treatment and prevention of pleural mesothelioma. PHLBI was founded in 2002 by Roger Worthington and Dr. Robert Cameron, head of the Mesothelioma Program at UCLA Medical Center. Dr. Cameron serves as PHLBI’s Scientific Advisor and is a constant contributor to the patient resources available through PHLBI.
 
The Patient’s Road Map is a helpful and informative guide to proper diagnosis, treatment and coping with pleural mesothelioma. We have recently sent copies of the brochure to many of our current and former clients. We have also asked for their input as to how the brochure can be improved so that it can be an even better resource for families confronting a mesothelioma diagnosis. We will pass along the feedback we receive in future postings. 
 
To get your own copy of Mesothelioma: A Patient’s Road Map, please call us at (800) 831-9399 or email us at info@mesothel.com.

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PHLBI announces position on asbestos ban legislation

April 4, 2008

The following announcement was released by the Pacific Heart, Lung & Blood Institute today regarding the pending asbestos ban legislation in the U.S. House of Representatives:

The Pacific Heart, Lung & Blood Institute unanimously supports a complete ban on asbestos-containing products and adequate funding for research on asbestos-related diseases. The House Committee on Energy and Commerce’s draft bill, currently referred to as the “committee print,” is the best vehicle to address a true ban and provide meaningful funding.

Public health concerns should prevail

We support the committee print’s ban on all asbestos containing products. We explicitly reject the “less than one-percent” exemption, which would allow the continued use of asbestos as long as this toxic mineral is less than one percent by product weight. Such an exemption would allow industry to include one pound of lethal asbestos in a 100-pound bag of insulation. This one-percent exemption would perpetuate the misery of the asbestos disease epidemic and is indefensible on public health policy grounds.

We support the committee print’s broad, effective asbestos ban as the first federal legislation that recognizes what scientists have known for decades: there is no safe level of exposure to asbestos. The committee print’s broad ban also reinforces the fact that there is no scientific or public health basis for allowing the one-percent exemption. The committee print also authorizes government-funded compliance testing of products in American markets, which will safeguard against machinations by industry to dodge the ban.

The Pacific Heart, Lung & Blood Institute supports the existing committee print as the most effective, science-based standard for effectively banning asbestos. Asbestos is responsible for the worst occupational health epidemic in our country’s history. We have seen no compelling health-based reason to support an exemption that would, in our view, only perpetuate the asbestos health epidemic. Sadly, the exemption is a stark reminder of the asbestos industry’s dark history of fabricating scientific research, stifling work safety regulation, and putting profits over people.

Research funding for treatment and a cure

The Pacific Heart, Lung & Blood Institute supports asbestos ban legislation that includes funding for asbestos disease research. A ban must be accompanied by significant resources for public awareness, for better treatment and for finding a cure.

We support unified efforts to draft meaningful research legislation that will be merged with the committee print’s current ban provisions. The committee print, with its ban provisions and its still undrafted research provision, offers an unparalleled chance for advocates and scientists to obtain, for the first time ever, enormous financial resources to better treat and ultimately cure asbestos diseases. The House subcommittee responsible for drafting these research provisions is already at work. The time is ripe for advocates to unite and work with the House to consolidate and strengthen these crucial research provisions.

The Pacific Heart, Lung & Blood Institute supports provisions that:

1.    Establish a competitive peer review grant program with targeted research priorities such as biological therapies, multi-modal therapies, prevention, biomarkers, and pain management;
2.    Fund centers of research and treatment excellence from coast to coast;
3.    Fund a database, registry and tissue bank;
4.    Create an asbestos surveillance and public awareness program;
5.    Appropriate $100 million over the first five years, divided between the National Institute of Health, the Center for Disease Control, and the Veterans Administration. We note that about 1/3 of all victims of mesothelioma in the U.S. were exposed while serving in the navy or naval shipyards.

The Pacific Heart, Lung & Blood Institute believes that the opportunity for a united front is extraordinary. By working together with victims and their families, groups such as the Asbestos Disease Awareness Organization, the Mesothelioma Applied Research Foundation, doctors, advocates, cancer research institutes, and national centers for excellence, we can—here and now—draft legislation to fully fund mesothelioma research while also supporting an effective ban as spelled out in the existing committee print.

Now versus later

The Pacific Heart, Lung & Blood Institute supports the committee print’s statutory approach to an asbestos ban, and rejects the rulemaking approach used in previous attempts to ban asbestos. Statutory bans have a proven track record with toxic materials such as PCBs and DDT.

We urge all stakeholders to join with us in helping influence research funding provisions, which have yet to be crafted in the House’s draft bill. Working together to write an improved bill in the House will provide a superior version to the Senate bill, which will face robust opposition in conference committee due to its unconscionable one-percent exemption. After a century of death and disease, the time for delay is past. Our board supports an immediate, unambiguous ban with research funding commensurate with the scope of the asbestos health epidemic today.

About

The Pacific Heart, Lung & Blood Institute is a non-profit 501(c)3 corporation composed of physicians, patients, and advocates dedicated to the eradication of diseases of the heart, lungs, and blood. PHLBI conducts innovative research to benefit future generations.

Phone: (310) 478-4678 | Fax: (310) 988-2693
1615 Westwood Blvd., Suite 204
Los Angeles, CA 90024
Email: info@phlbi.org
http://www.phlbi.org


Notes from ADAO 4th annual asbestos awareness conference

April 1, 2008

Summary by Jessica Like, executive director of the Pacific Heart, Lung & Blood Institute, Los Angeles

Conference held at the Karmanos Cancer Institute, Detroit, MI

Richard Lemen, PhD, MSPH Assistant Surgeon General, USPHS (Ret.), ADAO Science Advisory Board Co-Chair
Opening Address: History of Asbestos Disease and Preventing Exposure Prevention is the Best Cure!Dr. Lemen’s speech discussed the varieties of asbestos fibers with a specific focus on the Thetford Mines in Canada that produced 50 millions tons of chrysotile asbestos yielded from the veins of crushed rocks. Chrysotile asbestos has been dubbed the “safe asbestos” yet Dr. Lemen pointed to new studies that show tremolite contained chrysotile causing new mesothelioma cases. Dr. Lemen suggests that beyond the contamination theory, there may be an underlying reason as to why mesothelioma may in fact be caused from pure chrysotile.

Many treating specialists understand that mesothelioma originates on the pleura, not in the lung. Dr. Lemen speculates that mesothelioma may be caused from chrysotile, the type of asbestos fiber that clears the lungs instead of amphibole fibers which can be seen to remain in the lung upon inspection. Dr. Lemen asks if chrysotile is causing mesothelioma outside of the lung or are amphiboles (which account for 5% of asbestos fibers) causing mesothelioma from inside the lung?

Furthermore, chrysotile can often be found throughout the body in multiple locations, even in the urine of some patients. He added that no study of which he is aware shows that chrysotile does not cause mesothelioma. Dr. Lemen ended his speech with his input on the Ban Asbestos Act which currently allows up to 1% of asbestos by weight & is currently a common adoption of corporations who use asbestos. Dr. Lemen staunchly supports a total ban as asbestos affects people in many ways: it destroys individuals and families and causes a wide range of diseases and side effects – more than just mesothelioma and asbestosis.

Session 2: Diagnosis and Treatment:
Michael R. Harbut, MD, MPH, FCCP CoDirector, National Center for Vermiculite and Asbestos-Related Cancers Karmanos Cancer Institute
Non-malignant ARD (Asbestos-Related Disease)

Dr. Harbut summarizes some of the challenges faced by the medical community in treating mesothelioma. He points out that when patients present with other common diseases or cancers yet do not have the tell-tale symptoms of those diseases, they are still treated for the disease. However, legally if someone has an asbestos-related disease without asbestos exposure, the patient has no disease. From a medical standpoint if a patient has an asbestos-related disease with no asbestos exposure, this presents a “challenge.” Dr. Harbut’s point is that patients must be treated for the disease they have, regardless of legal ramifications.

He further stated some of the other medical problems for ARDs such as the inaccurate techniques to measure plaque value and the still forward movement in locating biomarkers other than osteopontin and SMRP. Dr. Harbut mentioned the research of which they are capable of producing such research into biomarkers is largely due to their database on asbestos diseases which dates back to the 1980s.

John C. Ruckdeschel, M.D., President and CEO, Karmanos Cancer Institute Malignant ARD (Asbestos-Related Disease)
Dr. Ruckdeschel’s presentation focused on the current barriers to successful therapies:

* Medical community nihilism (i.e. pulmonologists tell patients nothing can be done)
* Quick fix interferes with novel therapies (i.e. talc pleurodesis)
* Lack of centers with documented track records for treatment of disease (i.e. more multimodal centers for treatment around the nation)
* Lack of large, standardized trials
* Paucity of research institutions (perhaps something that could be remedied by the Ban Asbestos Act)

Dr. Ruckdeschel points out the need for new combinations of chemotherapy and maintenance therapy and echoes Dr. Robert Cameron’s long standing sentiment that Alimta/cisplatin chemotherapy should be administered in conjunction with a multimodal treatment plan and that the FDA approval of Alimta is unacceptable.

Dr. Ruckdeschel goes on to discuss the major surgeries of pleurectomy with Decortication v. extra-pleural pneumonectomy and acknowledges that the PD brings better results overall, that neither are beneficial without full cytoreduction, but then ends with stating that their team still believes the EPP is preferable for younger patients.

Rebecca J. W. Cline, PhD, Senior Scientist, Barbara Ann Karmanos Cancer Institute, and Associate Professor of Family Medicine and Public Health Sciences, Wayne State University
Psycho-Social Impact of ARD (Asbestos-Related Disease)

Dr. Cline and her team spent much time with Libby, Montana residents discussing the impact of the ARDs which have torn apart the community. She came away with valuable insights on how patients and those without ARDs view themselves. Most significantly, the stigma of ARD is equivalent to HIV for the Libby residents. They are embarrassed to speak of it with each other and the most appropriate example for this is the scenario of two women who had been best friends for 20 years who had never told each other they had been battling ARDs for 5 years, until they met in the clinic on the same day.

Warren Teel, M.D., Consultant Physician Occupational Health Clinics for Ontario Workers, Sarnia-Lambton
Pleural Plaques eh? A Canadian Experience Dealing with Asbestos-exposed Workers

Dr. Teel warmed the crowd with his good humor before delving into the increasing problem of ARDs in Canada, specifically in Sarnia, a city in Lambton County, otherwise known as Chemical Valley. More ARDs occur in Lambton than any other county in Canada, and drastically so.

Dr. Teel’s team works to identify work-related diseases and to bring awareness of these diseases to locals and to the rest of Canada. He remarks that despite research on biomarkers, no definitive data exists (regarding osteopontin or mesothelin), so instead they take an active approach with those highly exposed to asbestos by sending them to get yearly scans. So far, they have been able to help a handful of patients get early treatment because the scans have found the disease in beginning stages. Yet, Dr. Teel points out some of the problems with this method, including potentially extensive radiation to patients.

Terry Lynch, Internationall Vice President, Political & Legislative Director/Health Hazard Administrator, Insulators Union
Mesothelioma and the Asbestos Workers: Father, Spouse, Contemporary and Daughter. A Short Story of Their Exposure and Disease

PHLBI’s Director, Terry Lynch, opened with praise for the key figures in the ban asbestos movement, from doctors, to advocates, lawyers to legislators. Mr. Lynch went on to describe the impact of asbestos on his own family and called again for a complete ban on asbestos because there is no safe level of exposure. To illustrate, Mr. Lynch referenced the potential for another entire generation of exposed people if the proposal to burn asbestos-laden buildings in New Orleans is followed through upon or if the “wet-method” experiment in Fort Worth, Texas in December 2007 were expanded.

Mr. Lynch discussed his union’s moral obligation to keep their workers safe and extends this to all citizens. He mentioned that their union no longer uses asbestos in any of their trade work and has in fact changed their name from the Asbestos Workers Union to the International Association of Heat and Frost Insulators and Allied Workers. Mr. Lynch’s speech dovetailed into a moving story about other families ripped apart from asbestos and laments the fact that others could continue to experience such devastation if the Ban Asbestos Act is passed. To illustrate the point succinctly, under the revised language, a 50 lb bag of cement (a commonly used product by workers) could contain half a pound of asbestos by weight under this so-called ban. Such legislation serves to legalize asbestos.

Session 3: North American Action on Asbestos
Brad Black, MD, Medical Director, Center for Asbestos Related Disease (CARD)
Card Clinic & Community Action in Libby

Dr. Black dedicated his services to asbestos exposed persons in Libby, Montana and eight years ago opened the Center for Asbestos-Related Disease in Libby, known as CARD. CARD health services for residents, community awareness and clean-up, and research upon the population. Dr. Black laments that no database has yet been opened, but they are hopeful to have a database next year. CARD further provides a baseline risk assessment for the EPA.

Dr. Black presented the devastation of asbestos on Libby through a slide show of the many exposure sights, including baseball fields, fishing spots along the river, the crushed rock available for residents to take home and use as desired or for children to play upon. Further environmental exposure is found in the local golf course which has not received enough funding for clean-up and they continue to find new spots with rocks containing asbestos. Of Libby’s population of 10,000, 31 mesothelioma patients have been diagnosed in the last 8 years with at least 9 from environmental exposure alone. Libby is a tragedy yet it remains secluded with little attraction from the national government.

Aubrey Miller, MD, MPH, Senior Medical Officer & Toxicologist, Environmental Protection Agency (EPA)
EPA (NOA and Superfund Sites)

Dr. Miller presented a moving and deeply insightful presentation on public health issues and concerns regarding asbestos in the environment. He points out that centuries of public recognition still has not led to public health action. Dr. Miller has largely been outspoken on a need for a complete ban on asbestos and asserts the problems with the language on the current legislation allowing up to 1% asbestos by weight.

In studies, the EPA has monitored personal exposure verse environmental exposure. Allowing up to 1% asbestos by weight leads to greater personal contamination (as they found through personal monitoring gear) than just the asbestos found in the air. In El Dorado, California, workers demonstrated this theory by while wearing masks through the bike hills where asbestos is known to be found in the environment. The difference between the airborne environmental exposure and individual personal exposure was great and illustrates the need for further reform. He points out that because technology can now smaller quantities of asbestos exposure, essentially less than 0%, we should not accept a ban that does less than this. All fiber types contribute to ARDs and therefore these diseases need to a health concern for the EPA.

Dr. Miller’s presentation ended with a video of a worker trying to remove asbestos-filled insulation from an attic. Upon disturbing the material, large amounts of dust were released into the air. This video should be seen by anyone who doubts that up to 1% asbestos allowed in products is acceptable.

Paul Zygielbaum, ADAO Project Manager and Mesothelioma Patient
ADAO Product Testing Report

Mr. Zygielbaum updated the audience on ADAO’s testing of commercially available products that were found to contain asbestos. Full results are available here.

Mr. Zygielbaum furthermore discussed that the general public believes that asbestos is a banned product and is disappointed that legislators treat asbestos as old news.  ADAO funded the product testing which had major impact including press coverage, stop sales of the CSI fingerprint kit, congressional attention, public awareness, and further information on the state of asbestos in the US.  He echoes the sentiment that the current legislation or so-called “ban” legitimizes asbestos.  ADAO’s test results and the Planet Toys fingerprint kit, in particular, drew the subcommittee’s attention and greatly strengthened the position of advocates of a complete ban.

John Thayer, Former U.S. Capitol Tunnel Worker Supervisor
2008 Update: Asbestos Under the Steps of the U.S. Capitol

John Thayer was the supervisor for the workers beneath the Washington, DC tunnels for over ten years (a tunnel system which has existed for over 100 years). Mr. Thayer described the conditions in the 6 mile + stretch of asbestos-laden tunnels where workers spent long hours in 120 – 160 degree heat without fans so as not to disturb the asbestos and prevent public exposure.

In the meantime, Thayer and his men were being exposed to large amounts of asbestos and working in terrible conditions. Though Mr. Thayer tried the appropriate avenues of letting his superiors know about the conditions, including several citations to clean up the area, his efforts were ignored and met with no response from upper management. Mr. Thayer finally decided to go public with the information in order to find some resolution. He was fired. All ten of his employees have been forced to find different work and many are back in school learning a new trade. They all have health problems now. Mr. Thayer has severe scarring of lungs and indeed had this scarring years ago though his doctor never informed him of his findings. Mr. Thayer now lives in another state until he can finish his schooling and rejoin his family.

Linda Reinstein, Executive Director and Co-founder, Asbestos Disease Awareness Organization

Reinstein presented five years of personal and organizational experience in her session “Patient Advocacy and Matrix of Care.” She focused on building a roadmap for those exposed to asbestos or diagnosed with an asbestos-caused disease. “It is all about taming chaos, making informed choices for today, the future, and for living YOUR life.”

Becoming informed and remaining organized was the theme of her presentation, which was built around the life-changing physical, financial, psychological, and psychosocial issues faced by victims. Reinstein knows first-hand that asbestos-related disease affects the entire family. She summed it by saying, “Knowledge is power, and it mitigates the trauma-induced psychological paralysis.”

Reinstein shared her “multidisciplinary team approach” for patients. “It takes an expert team to help map your plan.”

Understanding your options makes choosing and managing treatment easier. Keep your team informed and encourage collaborative efforts. Reinstein recalled how it can be a full time job managing your treatment and that you need to become your own best advocate and select a co-advocate too.

Reinstein touched on the personal documentation she developed to remain organized, which she believed help to maximize time and have productive meetings with physicians during treatment.

Built around the acronym “LIFE”, Reinstein touched on the legal, insurance, financial and end of life requests needed to build strength, understanding, and planning for the patient and family members.

Two of Reinstein’s Top Ten points from the Reinstein School of Hard Knocks were:

1. Live Life – Use your calendar
2. Accept your “new normal”

“Most importantly,” Reinstein concluded with tears in her eyes and a family photo on the projection screen, “live well, love much, and laugh often.”


Giant and patriarch of the meso family finds peace

October 9, 2007

John McNamara: 4/27/46-10/7/2007

by Seth Davidson

San Pedro, CA – October 8, 2007

John McNamara’s voice fell silent, once and for all, on October 7, 2007. The voice of a champion, the voice of a husband, the voice of a father, the voice of a patient, the voice of a veteran, the voice of a hero, the voice of an advocate, the voice of a friend, the voice of a man demanding justice, the voice of a seer, the voice of a fighter, the voice of a peacemaker–each of these myriad voices and a thousand more fell silent on Sunday, more than three years after John was diagnosed with pleural mesothelioma.

The reverberations of John McNamara’s voices, however, resonate with the same strength and power as on any other day, because the voice of truth speaks forever.

John and daughters

“I met John shortly after he was diagnosed,” said friend and attorney John Caron. “After five minutes you realize you’re spending time with a lifelong friend. He took on life with extraordinary energy, and his fight against meso was the same way. He didn’t know the meaning of rest. Shortly after surgery he was walking, hiking, then calling from the top of Diamond Head with his daughters, laughing to say he’d passed a bunch of younger people, none of whom appeared to have mesothelioma. That’s the same energy he poured back into the meso community.”

Unbowed, unafraid

Like tens of thousands before him, John was struck down by mesothelioma in the prime of his life. Even with mesothelioma, at the age of 61 John’s “prime of life” was a force to reckon with. Two days before he died, John and his beloved T.C. were in Washington, D.C. with their “band of meso brothers” advocating for increased medical research on this dreaded disease.

John and T.C.

The foundation of his life was his marriage to T.C. More than thirty years of passion, love, commitment, struggle, and partnership had molded John into the iron man-mountain that he was. Despite the bad odds, the frequent hospital visits, and the roller coaster of emotions all cancer survivors ride, if you spent one minute around this dynamic duo you felt that everything was possible. After his surgery, radiation therapy, and interferon treatments, John seemed to be riding the crest of a beautiful wave, propelled by powerful forces, without end.

Even when the end came, his doctors puzzled over the exact precipitating cause. John suffered a recurrence of his cancer in early September, but his doctors opined that the likely cause of death was pneumonia brought on by an aggressive and swift infection.

“John was an incredible warrior who approached mesothelioma like he approached life, with individuality, vigor and courage,” reflected Dr. Robert Cameron, thoracic oncologist at UCLA’s David Geffen School of Medicine who operated on John in November, 2005.

“He never acknowledged the suffering that he endured, even to the end,” continued Dr. Cameron, who helped treat John at his hotel in Washington when John suddenly experienced severe back pain and numbness while the two were attending a mesothelioma medical symposium. “John dedicated himself to helping others with the disease, even when his own life was in jeopardy. His passing will be a sad loss for the entire mesothelioma community.”

John and T.C. were always thankful for the extra time they believed Dr. Cameron gave them. When he was first diagnosed, local doctors soberly predicted that John only had a few months to live, and that aggressive treatments would be futile.

Good works from the heart of a great man

The McNamaras understood that mesothelioma patients faced a gauntlet once they received their diagnosis. The biggest hurdle is access to treatment. For patients who live far from the East or West coasts, travel and lodging logistics consume precious time, money, and emotional energy.

Having gone through the wringer, John immediately put himself in the shoes of those not fortunate enough to live near UCLA, and for whom a consultation at UCLA’s mesothelioma program with Dr. Cameron would be an unbearable burden. The McNamaras decided to help ease the burden for others. They rented an apartment, furnished it, and made it available for free to mesothelioma patients visiting Los Angeles to consult with Dr. Cameron.

Kerry Kelley, whose husband Kermit underwent surgery in October and who stayed at the McNamara’s mesothelioma apartment, calls the McNamaras “a godsend. John and T.C. didn’t know us. But they knew what we were going through. We couldn’t have done this without them.”

John knew that his own experience with mesothelioma was invaluable, and rather than dwell on his own situation he took every opportunity to contribute and to support the cause of eradicating mesothelioma. Every year at the MARF mesothelioma symposium, John was there. Slapping backs, importuning legislators, encouraging patients, interrogating researchers, he awed those around him with his courage and good cheer. Hope, the resource always in shortest supply for mesothelioma patients, was as close as John’s ten-acre smile, in unlimited quantities.

“He was an empowering, courageous man,” says Linda Reinstein, executive director and co-founder of the Asbestos Disease Awareness Organization. “He told me about his next great goal-to climb Half Dome. That unconquerable, sheer granite face that looks impossible, but that you can get up if you take it one step at a time. It’s a meso march. One step at a time. And John had it in his sights.”

John’s “Bully Pulpit”

When the 2007 conference came around, John cheerfully made plans to attend once again as a donor, spokesman, and leader for the patient community. Before the October symposium, however, he learned that his cancer had returned. This time it had metastasized as a tumor on his spine. His physician counseled him to stay at home and gather his strength for an operation to remove the tumor.

Stay at home? John McNamara? Miss the most important mesothelioma advocacy conference of the year due to a life-threatening tumor? Refuse to mount the steps and hold forth from his bully pulpit? For John McNamara, the risks were worth the reward.

He packed his bags and arrived at the conference full of vigor and ready to lead the charge one more time. On Thursday evening John joined the mesothelioma community on the steps of our nation’s Capitol, where he lent his powerful voice to a candlelight vigil honoring those who had succumbed to the ravages of asbestos. His voice and the voices of thousands of others had coalesced into something concrete: passage of U.S. Senator Patty Murray’s Ban Asbestos Act.

“You know, if it wasn’t for Dr. Cameron, I wouldn’t be here,” John mused on Thursday. “I wouldn’t be anywhere. This cancer, I don’t have time for it. I have young children to raise and important things to do-like making sure they get good report cards.”

John’s priorities were grounded in the bedrock of his family. He felt that his obligations as a father were the most important ones he had, and he had no intentions of letting meso interfere.

The symposium saw John at his full-blown best, making new friends who walked away feeling like they’d known him since childhood. He chatted up countless strangers, people who lost “stranger” status after the first five seconds, and lectured them about the importance of investing in real estate. If you had a hand, and you were at the 2007 symposium, it was shaken by John McNamara. If you had a soul, he looked into it, and left you smiling.

Jessica Like, executive director of the Pacific Heart, Lung & Blood Institute, spoke eloquently about John and his journey. “Three days ago I was present when Senator Patty Murray said, ‘When someone with great passion dies, that passion is passed along to someone else,’ as she addressed a congregation of mesothelioma patients. As I listened to her speech sitting next to T.C., I thought about John’s absolute passion for life. Every day he brought hope to other mesothelioma patients by sharing his story, by donating time and money, and by spreading the word about mesothelioma and our need to find a cure. Over this past weekend I watched John smile as he told others about traveling, raising his children, being a doting grandfather and husband, and in his spare time, battling to fund mesothelioma research and help pass legislation that would ban asbestos forever in this country. His great passion was contagious and he bestowed it upon the hundreds of people he touched. We have all been robbed of John McNamara, but we will carry the legacy of his passion in our hearts forever.”

The voice that none could silence

The relentless pace and pressure of the symposium began to accumulate. Going full-bore all day Thursday and Friday, John’s massive frame slowly began to weaken. His method of rest? Taking the afternoon off on Friday to go sightseeing. John struggled to get from the front door of the hotel to the elevator, taking baby steps.

Late that afternoon the paralysis set in, and John did not leave his room that evening. A first. Then John missed the group photo that night at dinner. A first.

Bowed, never broken, he made the stand of a giant at his last MARF conference, refusing to let the disease deprive him of so much as a single word. If meso would take him down, it would be in the service of the people who needed him, surrounded by those who loved him, calling out in righteousness and good cheer that this disease must be cured now.

By Sunday night, when John’s plane touched down in Los Angeles, his condition was critical. Rushed to the emergency room at UCLA, he succumbed in the early morning hours.

The speed and finality of John’s passing has left us all stunned, bringing to mind the wise words of another whose beloved husband was similarly felled: “When the end of mesothelioma comes as a shock, you know he has lived a courageous life.”

Better, more fitting words for a titan like John have never been said.

John is survived by his wife T.C., and his three children Nicollette Annie, Shannon Hayley, and Katherine Claire.


Nikos Hontzeas Joins Fight against Asbestos Cancer

September 24, 2007

San Pedro, CA – September 12, 2007

Nikos Hontzeas lost his mother to mesothelioma when he was ten years old. The doctors first misdiagnosed her with pneumonia, a mistake that still occurs with alarming frequency due to mesothelioma’s relative rarity. This traumatic experience shaped Nikos’s life as he felt the ravages of the disease at an early age.

Nikos dedicated his life to cancer research after his father died from colon cancer, and his wife’s brush with ovarian cancer continued to drive home what everyone knows: not enough is being done quickly enough.

The Pacific Heart, Lung, and Blood Institute has hired Nikos as part of its research team. As a post-doctoral research associate at UCLA’s David Geffen School of Medicine, Nikos has worked on cancer-related research projects at UCLA since 2005. He joined PHLBI because, in his words, “Dr. Cameron is realistic about the possibilities with mesothelioma research, he has a fantastic approach. He’s doing this out of his own drive and passion because it’s the right thing to do. It really makes me feel good about working here.”

Nikos was also impressed by the survival times of Dr. Cameron’s mesothelioma patients, up to 5 years in some cases, and the focus on quality of life as well as quantity of life. By pursuing a combination of therapies to extend life, from cell studies to mouse studies, and eventually to clinical trials, Nikos believes that much can be accomplished.

Nikos’s father was a violinist, composer, and the head of a conservatory in Montreal. His mother was an accomplished flute player. As a violinist himself, with an abiding love for classical music, Nikos brings an interest in culture as well as science to his work.

 “It’s amazing that so many people who’ve lost someone donate money to this cause, but seeing the generosity of people like Dr. Cameron and those who are in a position to help actually doing so, is wonderful,” Nikos says.


Worthington donates $250,000 to meso research

September 24, 2007

Worthington Honors Father’s Memory with PHLBI Gift

San Pedro, CA – Aug. 15, 2007 – “It is sharing that keeps the engine of humanity working, and shines a light on the issues that really should be out there for open, and unapologetic discourse.” June Breit, mesothelioma patient, warrior, and survivor.

David “Punch” Worthington, Ph.D, went down swinging. Larger than life, he was an outdoorsman, a boxer, a geneticist, a union organizer, and a father. He left an enduring sense of social justice as a legacy for his friends, his sons, and the research lab that bears his name.

On the first anniversary of Punch’s death, son Roger has donated $250,000 to the Pacific Heart, Lung, and Blood Institute’s research lab named after Punch. “Punch had an extraordinary love of life and a profound respect for people. He thought that the best way to counter injustice was to stand up and fight it,” Worthington said. “He was also a scientist and he’d be proud of our work in both preventing and treating asbestos cancers.”

Terry Lynch, political and legislative director for the Asbestos Workers Union, offered this fitting tribute:

“Reflecting on the one year anniversary of the passing of our dear friend, it is a tremendous source of pride for me to be associated with the Pacific Heart, Lung, and Blood Institute on behalf of the Asbestos Workers Union. It is very appropriate that the centerpiece of PHLBI is named in honor of Punch. The David ‘Punch’ Worthington Research Laboratory is located at the David Geffen School of Medicine at UCLA. Punch was truly a great American who fought the good fight on many fronts, including his brave battle with lung cancer. While Punch continues to be missed, he will always be a tremendous inspiration to all of those who knew and loved him.”

Punch died on August 25, 2006, from asbestos cancer. His estate donated $90,000 to the Pacific Heart, Lung, and Blood Institute to further prevention, treatment, and cure for abestos disease. With his gift in Punch’s memory, Roger Worthington will have given over $750,000 to the Institute.

Worthington will present a check to PHLBI on Monday, August 27, at an informal noon ceremony on the lawn outside Cafe Med at UCLA Medical Center. All are welcome to attend. Click here for directions.

PHLBI’s research projects include:

Mesothelioma Induction: Molecular pathways in carcinogenesis. The long latency period between asbestos exposure and the development of mesothelioma provides an opportunity to study the molecular pathways in the pathogenesis of asbestos-related cancer. Studying the developmental biology of these tumors in exposed animals and in established tumor lines will allow targeted therapies to be devised to treat malignant pleural mesothelioma.

Immunotherapy: Immunotherapy enhances the body’s natural defense system. Other cancer treatments already utilize immunotherapy. Data and experience suggest that mesothelioma may be treated by manipulating the immune system. One promising treatment option is the immunotoxin interleukin-4 or IL-4. PHLBI currently has 8 projects related to immunotherapy. The first phase of hyperthermia treatment is already underway, and the overall project is ongoing.

Interferon Alpha: An immediate goal for mesothelioma treaters is controlling the disease with chronic suppressive therapy. A prime molecule for this type of approach has been identified as interferon alpha. A small selection of patients currently undergoing weekly injections of interferon alpha is doing well. Some are in their second year of treatment.

Disease Prevention: Anti-inflammatory agents like Celebrex are available for prevention of colon cancer in high risk individuals and for treatment of rheumatoid arthritis. PHLBI’s research also focuses on preventing further blood vessel formation to stop tumor growth. A Celebrex clinical trial is ongoing at UCLA and is available to asbestos workers who also smoked.


Hyperthermic treatment slows meso growth

September 24, 2007

August 3, 2007:

Pacific Heart, Lung, and Blood Institute optimistic about hyperthermic treatment

San Pedro, CA – Aug. 3, 2007 – What if you could beat back mesothelioma with a hot bath? That would be too good to be true, and for now, it is. However, the Pacific Heart, Lung, and Blood Institute in Los Angeles is learning that high-temperature bathing of mesothelioma cells may slow down or even stop their growth.

This current study is phase I of a project testing hyperthermia with and without adjuvant therapy. The project first seeks to compare a variety of individual therapies: hyperthermia, COX-2 inhibition, and IL-4 toxin. Those results will suggest which therapies can be combined for maximum effectiveness in phase II. These combinations provide hope that the current 1-2 year median survival for mesothelioma patients can be significantly increased.

According to Jessica Like, executive director of PHLBI, “The long-range goal for this project is to develop effective anti-tumor treatment strategies. Heat, which is toxic for living cells, increases tumor penetration for chemotherapy. Some clinical trials are in the process of determining whether hyperthermia with chemotherapy improves survival compared to chemo by itself.

“Although hyperthermia has been utilized in peritoneal mesothelioma, it has not yet been applied to pleural mesothelioma. We hope that it soon will be.”

The important work being done at the Institute includes plans for a study that begins in October, testing the effectiveness of IL-4 toxins in conjunction with Celebrex to see if it will kill or inhibit the induction of mesothelioma in lab animals.

Click here to learn more about the Institute, and here if you’d like to make a donation to support PHLBI’s research activities.