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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Standing strong against mesothelioma: pleurectomy/decortication with Dr. Cameron

October 16, 2007

All Systems Go!

In one hour, 68 year-old Kermit Kelley was about to undergo life-altering surgery. It was nine a.m. in the pre-op staging area at UCLA’s David Geffen School of Medicine. A steady stream of nurses and doctors had been visiting Kermit since seven o’clock, hooking him up to this, inserting that.

Since his diagnosis with malignant mesothelioma in July, 2007, Kermit and his wife Kerry had pored over the medical literature. They asked all the questions: Should he have chemotherapy? If so, when—before surgery or after? Should he even have surgery? If so, what surgery? The extra-pleural pneumonectomy (EPP), in which the diaphragm, tumor and lung are amputated? Or the pleurectomy/decortication (P/D), in which the doctor removes only the tumor and spares the lung?

Sifting for a solution

The answers were not clear cut. “We knew that lots of doctors liked the EPP,” said Kerry. “But we hated the idea of losing Kermit’s lung. Why take out the lung if it’s healthy and free from cancer? It just didn’t make any sense.”

 

Kelley 1

Bring it on! Kermit Kelley and wife Kerry await final instructions before surgery. UCLA’s David Geffen School of Medicine, September 27, 2007.

The Kelleys learned that the EPP was widely considered to be the surgical standard of care. “Sure, it’s the standard,” said Kerry. “But what does that mean? The standard for every breast cancer used to be a radical mastectomy, and now we know how wrongheaded that was. I’m no doctor, but I’ve got common sense, and some things just don’t feel right.”

They knew that neither operation would cure Kermit’s mesothelioma. Both operations, even if performed by a world-class surgeon like Dr. Cameron, would leave microscopic malignant cancer cells in the chest cavity. They learned that recurrence was virtually certain, that it was a matter of “when” rather than a matter of “if.”

“Then we found out that the EPP can sometimes actually speed up the spread of the disease. That really scared us. Why would we do a surgery that takes away a healthy lung and helps the cancer grow in other parts of his body? It didn’t add up.”

The Kelleys were troubled that if they had the EPP, the risk of cancer spreading might increase, since the surgeon typically removes the entire diaphragm, a cutting process which can create holes through which malignant cells metastasize elsewhere by spilling into the peritoneum.

Since the tumor’s recurrence is a virtual certainty, what if it cropped up in the only good lung after the other lung had been removed? What then? The evidence began to tilt in favor of Dr. Cameron’s pleurectomy/decortication.

Straight talk

The Kelleys consulted with Dr. Robert Cameron, director of the Mesothelioma Program at UCLA.

“I liked him right away,” said Kermit. “Forthright. No sugar-coating. Compassionate. Objective. A man you can respect after the first five words come out of his mouth.”

Kelley 2

Encouragement: Dr. Cameron advises Kermit of test results showing the tumor had encased the lung and locked up the diaphragm. Game plan: liberate the lung, restore normal lung function.

Adds Kerry, “Dr. Cameron didn’t promise a cure or tell us that his surgery was always better than the EPP. He laid out the facts—because of all the other parts of therapy and other factors and such, you can’t scientifically say one is better than the other. But he did say he would try to buy us some time.”

If the surgery succeeded, the post-operative period would allow them to also pursue complementary therapies such as immunotherapy with interferon alpha. Dr. Cameron explained that the published survival data did not clearly favor the EPP over the pleurectomy. He advised that more articles were being published that questioned the presumed merits of the EPP over the P/D, much as surgeons years ago began to question and later discard the strategy of performing a radical mastectomy for every breast cancer.

The Kelleys were also impressed with quality of life issues after the surgery. “I’ve got a good heart, but I was concerned about putting more stress on my ticker if I only had one lung,” Kermit said.

Kermit, a career water works contractor in the public and private sector for over thirty years, knew the value of hard work. “Sometimes doing the job right means working harder and longer. You know that on the job site, but you don’t ever think about it like that with surgeons. You know, it’s true. Sometimes the difference between doing a good surgery is kind of like doing a good piece of carpentry, the guy who is more patient and has more experience and knows his tools better and knows his wood better is the guy who does the better job. You don’t think of working on a lung the same as working on a cabinet, but I suppose when you get down to it, maybe it is.”

Kelley 3

Search and destroy: Dr. Cameron (R) and Dr. Peng (L) opening the chest. The thick rind of tumor was immediately evident.

The Kelleys learned that the EPP was a simpler procedure that took 3-4 hours, whereas Dr. Cameron’s surgery was more complicated, and often took 4-9 hours, depending on whether the tumor had invaded the chest wall, heart sac, or diaphragm. Kermit read that each procedure cost about the same, but that Medicare paid the surgeon more for the easier EPP than for the longer, more arduous P/D.

Crossing the Rubicon

“That did it for me,” Kermit said. “Dr. Cameron is willing to work twice as long for less money because he believes the pleurectomy is the way to go. If I’m going to let a doctor stick his hands into my chest, I want the hands of a skilled craftsmen who’s not afraid of hard work. That’s how I was raised.”

Kermit decided that he could more effectively pursue the healing process with two healthy lungs rather than one, quarterbacked by a doctor who was not afraid of a hard day’s work, who was an expert surgeon, and who was committed to helping his patient from start to finish. “I didn’t want a surgeon who would cut and run. I know this is a long haul. I wanted a doctor who would help us with options after surgery.”

Adds Kerry: “We believe it all came down to quality of life. With two healthy lungs he has a better chance of recovering from the surgery and has a better chance of living a high quality of life.

A tumor that slowly suffocates

Thoracic surgery is one of the surgical specialties whose practitioners are often regarded with awe. These are the men and women who operate on and around the heart and lungs, the organs that more than any except the brain symbolize humanity and life. The P/D begins by cutting open the chest, clipping out a rib, and spreading open the chest wall.

In a healthy person, such a procedure would reveal the lung and diaphragm, working together to pump air into the oxygen-hungry body. But in Kermit’s case, the open chest revealed a smooth, red, thick rubbery blanket that encased the entire lung and stuck like cement to the chest wall.

The massive mesothelioma tumor had grown around his lung, compressed it, and finally collapsed it. He had only one lung working now, and the void in his chest testified to the power and destructive force of the relentless tumor.

Stripping away the serpent

Dr. Cameron first explored the extent of the tumor with his hand, inserting it into Kermit’s chest. Although the PET scan had depicted the tumor as small to moderately sized, reality proved far different. As it slowly strangled his lung, the cancer had also latched onto the lining of his heart and his diaphragm. Inveigling itself with a complex network of veins and arteries, the giant tumor had positioned itself so that removing it might be more dangerous than leaving it alone.

Kelley 4

The devil by its horns: After stripping the tumor off the chest wall and lung apex, Dr. Cameron holds a flap of tumor. Fours hours to go.

It became clear in an instant why so many surgeons prefer the EPP and eschew the P/D: patience and skill. Working the tenacious and deadly tumor away from the organs and arteries had to be done millimeter by millimeter. The patience, concentration, and methodical repetition required to strip away the cancerous blanket are monumental. It takes all of that, plus nimble fingers, which are probably the surgeon’s best tumor-stripping device.

Uncertainty was another factor. What if after all the hard work of chiseling the tumor off the chest wall and diaphragm it turned out the tumor had trespassed – i.e., contaminated – the actual lung lobes? If the surgeon simply amputated the entire tumor-encoated lung, without daring to strip it off, and it later turned out the lungs were tumor free, well, by that time it would be too late. More risk, more tedious labor were the only certainties. But, with all big risks comes great pay-offs.

Dr. Cameron’s legendary stamina was evident after the first few hours passed. Never leaving his patient’s side for even a second, he carefully and laboriously performed his delicate work. As other members of the surgical team finally succumbed to fatigue or shift’s end, Dr. Cameron remained at the helm of his ship, calmly, patiently, firmly guiding the hulk of his surgical team to its final destination: peeling away the cancer within

Dr. Richard Peng, an enormously talented young surgeon from Orange County, worked in tandem with Dr. Cameron, following his guidance and working with extraordinary care and precision within the narrow confines of the chest cavity. Dexterously using his surgical tools as he sutured together a patch of bovine diaphragm to replace the pieces of diaphragm lost to the tumor, Dr. Peng displayed the same level of focus and complete absorption as his mentor. They had to, as stripping away tumor off of a 2 mm thick sheet of muscle is like cutting glue from the surface of a balloon without puncturing it. Dr. Cameron and Dr. Peng were well aware of the risks of nicking the diaphragm and thus providing a portal through which the malignant cells could travel to the gut.

 

Kelley 5

Out, out!: Dr. Cameron holds the thick, rubbery tumor after meticulously scraping it off the thin diaphragm muscle.

The beating heart

Kermit’s tumor, however, had decided to throw Dr. Cameron a curve. In addition to its insidious growth along the lung and diaphragm, it had snaked its way up to the pericardium, the delicate sac that encloses the human heart. Removing the tumor without damaging the pericardium was crucial to keeping the cancer off of the heart. In a worst-case scenario a patient can live with only one lung—the same can obviously not be said for the heart.

By now the operation was six hours long, and at a time when most people would collapse simply from having to stand in one place for so long, Dr. Cameron was just as focused and fresh as the moment he’d begun—never mind that he had left the operating room the prior evening at midnight. Never moving from his patient’s side, he and Dr. Peng carefully began what can only be described as a procedure that is delicate beyond belief.

The attempt succeeded, and the heart was safe.

The home stretch

A full seven hours into the surgery, Dr. Cameron moved to the final part of the operation: removing the tumor from the lung itself. This part of the surgery has often been called “impossible” by experienced thoracic surgeons, since the tumor creeps down into the deep folds and fissures that separate the different lobes of the lung. With a smile, Dr. Cameron showed the “impossibility” of this aspect of the surgery, using the most sophisticated and delicate instrument ever created: his index finger.

Gently moving his finger into the fissures, he easily lifted out the tumor. Soon enough the entire cancer was peeled back like the diseased rind of an orange and removed from Kermit’s chest. Beneath the cancerous blanket lay a big, pink, healthy lung, waiting to step up in its lifelong service to the body’s blood. With a twist of the anesthesiologist’s knob that poured life-giving oxygen into the collapsed lung, the lung filled with air and swelled up to recapture its former space within the chest.

Dr. Cameron watched for a moment, and then said with a smile, “Look at that. A perfectly good lung. Why would anyone want to cut that out and throw it away? I think it looks pretty good right where it is.”

Kelley 6

Let my lung breathe!: Dr. Peng holding the tumor while Dr. Cameron peels the tumor from the lung.

About nine hours after opening up Kermit’s chest, Dr. Cameron and Dr. Peng removed the four-pound tumor in one piece from the cleaned up chest cavity. “Fruits of their labor?” Not exactly. The fruit of their labor was still inside Kermit’s chest, where it belonged, a pink plum of a human lung, ready to return to action. Not a bad pay-off for a few extra hours of hard labor, especially for Kermit and his family.

Mesothelioma patients giving back

Kermit’s desire to educate patients, doctors, and the world about mesothelioma and its treatment is a common thread that runs among victims of asbestos poisoning. John McNamara, a mesothelioma survivor like Kermit who was also treated by Dr. Cameron, decided that he would lend a hand as well. John and his wife T.C. bought an apartment in Los Angeles, furnished it, and made it available to any mesothelioma patient seeking consultation or treatment from Dr. Cameron.

This generous donation made the Kelleys’ initial visit and surgery in Los Angeles possible. Generosity tends to spread. Like the McNamaras, the Kelleys before and after the surgery expressed their wish to help educate others about Dr. Cameron’s surgery. “We’d like others to know about the surgery,” said Kermit, who agreed to having his surgery photographed. “I don’t think of myself as either a ‘guinea pig’ or a ‘trailblazer.’ I’m just a guy who’s making the best of a bad situation. I’ve learned a few things from patients before me, and I hope to contribute my own story. “

Working together, and coordinated through the Pacific Heart, Lung, and Blood Institute, the McNamaras and Kelleys have helped turn another page in the treatment and education about this disease.

www.mesothel.com

www.rogerworthington.com


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.


California plumber and mesothelioma patient wins $14.6M settlement against asbestos defendants

August 22, 2007

San Pedro, CA – Aug. 21, 2007 – A 68 year-old California plumber/pipefitter and his wife today settled their lawsuit in Los Angeles Superior Sourt for approximately $14,600,000 against companies who made asbestos containing products.  Afflicted with mesothelioma, an aggressive form of asbestos cancer, the career plumbing contractor was represented by the law firm of Roger G. Worthington, P.C. in San Pedro and by Simon, Eddins, and Greenstone, LLP in Long Beach.

This is one of the largest settlement amounts ever reached in a Los Angeles mesothelioma case. It took just over nine months from the time the suit was filed until the final settlement. Major defendants included asbestos-insulated equipment manufacturers American Standard, Crane, Foster Wheeler, Weil McClain, Yarway, Ingersoll-Rand, and Bell & Gossett.

The plaintiff was first exposed to asbestos-insulated equipment in the early 1960’s, working on heating equipment, pumps, valves, and boilers. As a plumber in Massachussetts and later in California he was repeatedly exposed to asbestos gaskets, packing, and insulation. This case shows that solvent, viable defendants can be successfully brought to heel even though  most of the major asbestos insulation manufacturers have declared bankruptcy.

According to lawyer Roger Worthington, “Innovative and aggressive counsel with expertise in mesothelioma can still help clients with difficult exposure histories get justice in the courts. Many of the equipment manufacturers are new to the litigation and all of them disputed our theory that they were liable as manufacturers of asbestos-containing equipment.”

Worthington adds, “This is a classic case of a hard-working Californian and family man poisoned by equipment manufacturers who didn’t bother to warn that their asbestos-insulated products were lethal, despite mountains of scientific evidence proving that exposure to even tiny amounts of asbestos is toxic. This sends a clear message to equipment manufacturers who put asbestos in their products that they will be held accountable for their negligence and conscious indifference,” said Worthington.

The case, which settled before reaching a jury verdict, featured testimony by thoracic surgeon Robert Cameron, M.D. According to Dr. Cameron’s testimony, “Like every puff of smoke increases your risk of lung cancer, and each exposure to asbestos, whether small or big, leads to an increased risk of mesothelioma.” Dr. Cameron is the director of the mesothelioma program at UCLA medical school. The plaintiff was treated by Dr. Cameron, receiving a pleurectomy with decortication, radiation treatment, and immunotherapy with interferon.

After the settlement was reached the plaintiff commented, “I’m grateful for the hard work of Mr. Worthington and my attorneys but I’d give it all back in a heartbeat to rid my body of mesothelioma forever.”

For more information on mesothelioma representation, settlements, and treatment options, contact us at 1-800-831-9399, or visit our web site, www.mesothel.com.