Lois and Marty Schwarting: mesothelioma warriors

October 29, 2007

San Pedro, CA – October 29, 2007

Marty Schwarting, 73, stands 6-2 and weighs 130 pounds. The mesothelioma tumor inside his chest has compressed a lung and sapped much of his physical strength, but his brilliant, alert mind and excited, dynamic way of speaking still resonate.

Schwartings

His wife Lois is tough, energetic, powerful, and tender, and she casts a loving glance at Marty. “We’ve just celebrated our twentieth anniversary. He’s my best friend. He’s the best friend I’ve ever had.”

“She’s always ten steps ahead,” Marty says, unable to hide his affection. “I would have died from this meso a long time ago without her.” Together this resilient couple has spared no effort to find the best possible treatment for his asbestos cancer, and they’re both holding out hope for the best.

Active, undaunted by obstacles and complications, and full of faith, Marty and Lois continue down a path that was forced upon them.

Bending with the wind, hard as steel

Mesothelioma visits itself, always as a calamity, on more than 4,000 people in the U.S. alone. The toll it takes is so much more than lost lives. It contorts families and loved ones to the breaking point.

At the age of 53 Lois went to Gateway Community College in Phoenix, Arizona and completed a one-year, eighteen-hour credit course in medical transcription, graduating with top grades and making the president’s list for academic achievement. She worked at a multi-specialty clinic for two years, before her success and decision to sign on with a nation-wide transcription service, allowing her to work as a subcontractor at home. This would end up being a blessing in their lives, giving her a detailed knowledge of medicine and of the medical system.

Schwartings 2

Lois and Marty met in mid-life while single, became friends, fell in love, and married. Their life together had extraordinary balance. An electrician who worked in home and business construction, Marty was always up early and in the winter he would make sure that Lois’s car was started and warmed before she left for work. A tremendous cook and homemaker, Lois kept Marty topped off with the freshest food, made by hand, from the heart.

It ain’t allergies, Doc

Lois’s life was about to change forever. “One day Marty complained that he was having trouble breathing, and you know what? Marty never complains. Then one day I saw him sitting down catching his breath. Marty never sits down to catch his breath. And he was only coming back from across the street where he’d just checked the mail.”

Lois finally told Marty that if he were feeling bad, he should see the doctor. That March consultation resulted in a diagnosis of allergies and perhaps an asthma condition. “It would be several months later when his life was probably saved by not having a shopping cart at Costco,” Lois says. “We were standing at the register and Marty remembered he had to go back and get a 36-pack of Pepsi. It was 500 feet to the back of that store, and he walked back without a cart because Marty could certainly carry it without a cart! He had to stop twice coming back, and he was gasping and wheezing when he got back to the register with that pop!

Schwartings 3

“It all became clear to me at that moment. My Marty was sick, and we were going to find out why and get him well.” Lois’s eyes blaze, and her mouth sets thin and hard as if in granite.

The ensuing x-ray showed Marty’s right lung completely eclipsed, floating in a mass of fluid. The pulmonologist tapped Marty on the back and it made a hollow, thumping sound. “Sounds just like a ripe watermelon, huh?” he said.

“If you say so,” Lois answered.

Running the paper gauntlet

The doctor set Marty up to go to the hospital to get the fluid drained. They drained two liters, and scheduled him to come back to drain another two liters on the following day.

The battle had just begun-the battle of the forms. The first obstacle was getting authorization for a CT scan. “They learned a different vocabulary pretty quick,” Lois says, “and ‘can’t’ wasn’t part of it.”

Schwartings 4

“I had to really bird-dog it,” Lois continues. “I had to call the CT tech at home, who fortunately I knew from church. I faxed the approval to her clinic and she got it scheduled. Otherwise, we’d still be waiting. But I have a word for things like that, when people drop into your life and help you. It’s better than a good thing. It’s a God thing.”

With an aggressive and concerned doctor on their side, one who understood the importance of speed and the rapidity with which mesothelioma advances, he got Marty in to see a surgeon right away, and Lois and Marty felt like they were finally winning the bureaucratic battle.

The surgical pathology report confirmed malignant pleural mesothelioma, but Lois was undaunted

“I was always interested in cancer,” says Lois. “When I worked at the clinic they called me the oncology queen because I always did the oncology transcriptions for the doctors. I made sure they gave me the oncology tapes, so I could keep up with the patients’ conditions.”

While in the hospital for thoracoscopic biopsy and partial pleurodesis, the Schwartings met with oncologist Dr. Jack Cavalcant of Desert Oncology in Mesa, Arizona. He currently has a mesothelioma patient who has survived for three years since diagnosis. (She still lives! )

Lois talked to Dr. Cavalcant at their consultation and said, “Surely you see how thin Marty is,” wondering if Marty would be able to withstand the chemotherapy.

Dr. Cavalcant was a good judge of men. “He has a strong, powerful body for his size, and a tough, tough spirit. He’ll get through it just fine.”

After draining more fluid and discharging Marty to home on March 9, they scheduled their first chemotherapy treatment for March 22.

Schwartings 5

“As soon as he was diagnosed I started Googling,” says Lois. “I saw that after diagnosis people typically live 4 to 12 months. I kept searching, and found Ron Simkins’s story, and read it. I called Janet, his wife, to see if she would talk. Janet answered the phone. I told her that I’d just found out that Marty had meso and that I was calling her because of her husband’s story on the Internet. We talked for a long, long time. She referred me right away to ACOR and to MARF.”

Hard landing

Lois reflects on the importance of the Internet. “There’s a lot of information out there on mesothelioma, lots of it good and useful. Even if you don’t have a background in medicine, you can sift through the material and come up with information you need to help make some of these tough decisions.”

Lois’s pragmatism is checked for a moment as she runs it all through her mind again, at light speed, for the millionth time today. Then she’s back.

After chemo Marty would sleep but only doze, mostly in the recliner. His only movement was walking to the restroom, dinner table, or back to the bedroom. Some days he couldn’t so much as cross the street to get the mail.

Marty reflects on his situation, and breaks in, his clear, articulate speech grasping the various threads of cancer, of chemo, of his relationship, of his changed state. “Chemo knocks everything out of you. I’m not capable of doing the things I used to do but don’t want to give up doing them. It’s hard. I took care of everything.”

Lois follows his train of thought. “He resents anyone doing his work. Marty used to do everything, fix everything.”

“That’s what makes you so distraught,” Marty agrees. “I get forced out by lack of stamina and strength.”

Then the radiologist’s office calls to set up an appointment, calling Lois to her battle station. She rattles off ½ dozen medications, his exact weight, contraindications, and quizzes the caller about various items. She calendars the appointment, confirms the pick up time for the contrast, finds out when to ingest it and whether he should eat before the appointment, then reconfirms everything. Twice. “It helps when you speak their language,” she says with a smile.

Brave new world

“I’m interacting with doctors and their staff all the time. I call them if they’re not responsive, change them if they’re not putting us first or doing everything they can. One of our friends we met through ACOR told me about Dr. Vogelzang in Las Vegas. He’s a fine man and a brilliant doctor. He returned 24 e-mails on a Sunday-24! Marty wasn’t a candidate for surgery because the cancer had already invaded his chest wall, but we felt it was really worthwhile doing a consultation with Dr. Vogelzang.”

After seven cycles of chemotherapy over twenty-one weeks, Marty has been through a lot. “Days 3-10 after the chemo I’m a basket case. My fifth and sixth chemos were the ones that zapped me the worst. No energy, in a daze, in a fog. I’d tell anybody facing this cancer to be prepared for the down cycle. Because it’s coming. You start feeling good, then you get beat down again. It’s cumulative after a while.”

Food is crucial, Lois adds. Simple, delicious, fresh, and homemade food is another part of this complex anti-cancer equation, arming the body with nutrients, vitamins, and calories so that it can tolerate the chemo and fight back against the tumor. “I keep a freezer full of easy, quick foods that I’ve prepared so he can have good food on demand! Chemo kills his appetite, so when he’s ready to eat there’s got to be something right then, right there.”

Lois adds, “It’s simple, but you can make a difference in cancer treatment by focusing on healthy food. You’ll tolerate the treatment better, feel better, and have a stronger body with which to fight the cancer.”

Keeping the future alive and bright

Shortly after his diagnosis, Lois and Marty, undaunted, followed through on their long awaited 14-day cruise/tour to Alaska. It was Marty’s dream.

The next trip will be to Ft. Lauderdale and Hollywood, Florida, to visit two of Marty’s high-school buddies from Long Island. “We keep planning. You have to have something to shoot for.”

“When people get diagnosed with mesothelioma, they are overwhelmed,” says Lois. “But they don’t have to be. The Internet, and meso support groups out there can provide information and resources. Ask questions, be confident, trust your judgment. If you like a doctor, work with him. If you don’t, switch. The hardest thing about meso is that it tries to tell you that you’re not in control of your destiny. But you are. You just have to wrench it back.

Schwartings 6

Lois is preparing to run by her daughter’s house and drop off some things. Since it will be rush hour in Phoenix on the way home, she and Marty will enjoy a round-about detour, traveling through the desert and along a canyon route they’ve not driven since before meso. “We’ll soldier on,” Lois says. “We’ll take it one day at a time, and enjoy each day, each hour, each minute that we’re together.”

Marty smiles and squeezes her hand. Their eyes meet, and you know they’ll never give up.

The Law Office of Roger G. Worthington, P.C.
1-800-831-9399
The Law Office of Roger G. Worthington, P.C. | 273 W. 7th | San Pedro | CA | 90731

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Dr. Eric Vallières: Engaged on all fronts against mesothelioma

October 24, 2007

Whether he’s expanding the minds of youngsters at Islander Middle School on Mercer Island, instructing eager surgical residents over the open chest of a cancer patient, leading a debate with thoracic surgeons over multi-modal treatment methods for mesothelioma, or chatting affably while reining in the 300-horsepower rumble of a ski boat, Dr. Eric Vallières is always fully engaged.

Through professional publications and by working on a number of mesothelioma cases, Dr. Vallières had the opportunity to disseminate detailed information about his multi-faceted approach to the disease. As a surgeon, as a researcher,  as a scientist, and as a teacher, Dr. Vallières engages on a whole host of fronts in his quest to help patients stricken with malignant mesothelioma.

Trained from his early twenties, he has become a master teacher. Yet “teacher” misses the mark, for this brilliant and dedicated doctor has none of the quirks and qualities that consign so many “teachers” to the realms of the rigid, boring or flat-out weird. To the contrary: Dr. Vallières’s lessons are so insightful and done with such a deft hand that the listener—or more often, the participant—realizes that he’s been taught after the fact.

Such a light, skillful, and incisive touch is hardly surprising. Dr. Vallières makes his living by giving more life to others as a thoracic surgeon. More than any other medical specialty, this one depends on extraordinary manual dexterity and the ability to orchestrate an entire surgical team. Gentle yet firm, kind and caring, unusually skilled yet as personable as the guy next door, Dr. Vallières is always engaged.

The enemy that never sleeps

Part of his engagement stems from training, part from experience, and much from necessity: Dr. Vallières’s nemesis is cancer, an enemy that always seems to be on the run, and multiplying. Resting and idling are simply not options. Recognized by the University of Washington’s School of Medicine as the Department of Surgery’s “Teacher of the Year” in 1998, Dr. Vallières’s core approach as a pedagogue mirrors his approach as a surgeon. “Well-prepared,” “doesn’t shoot from the hip,” “never absent,” and “excellent teaching skills” were phrases used by those whom he taught.

Small wonder that Dr. Vallières is described in these terms by his students. His principal foe is lung cancer, an enemy which over the years has begun to show its Achilles heel. As surgical techniques, radiation therapy, and chemotherapy have improved, the typical lung cancer patient’s survival curve has moved upward and to the right – indicating better outcomes.

But mesothelioma continues to elude even the most sophisticated human and medical weaponry. Dr. Vallières has spent the last fifteen years engaged in a high-stakes battle with this relentless asbestos cancer that most often attacks the pleural lining of the lungs. It’s not hard to grasp the destructive impact this disease has on patients – the rapid growth of the tumor, its tenacious trespasses, the way it engulfs the lung and slowly suffocates its prey.  These horrors we know about all too well. Tangible, living horrors so large and foreboding the reader is prompted to ask – why would any surgeon invest his time, energy and compassion in what appears to be a futile battle?

Dr. Vallières dug deep to answer that question. “As a physician you want to cure, to heal. As a surgeon, you want to grapple directly with the pathology and cut it out or somehow operate on the affected organs so that they can return to their normal, healthy function. Mesothelioma thwarts the physician on so many fronts—it resists a cure, it grudgingly responds to treatment, and it always seems to recur, often in a remote site that is inoperable.”

Rapidly spreading. Bulky tumor. Refractory to treatment.  Recurrence. This is the dark language of an ugly disease. How ugly?  In the case of mesothelioma patient Robert Treggett, Dr. Vallières summarized the survival numbers.

Roger Worthington: Could you tell the jury a little bit about the survival statistics for patients diagnosed with this disease?

Dr. Eric Vallières: Sure.  If you look in the books, the median survival of patients who are diagnosed with mesothelioma is sixteen months. Now, you know, some patients will be diagnosed earlier, and by such, will appear to have a longer survival, and other patients are diagnosed later and will have a lesser survival, but sixteen months is what you will see out there in the books in general.

The odds don’t look good. What then, must we do?

Devising a new line of attack on a recalcitrant offender

The arsenal against mesothelioma needed new weaponry when Dr. Vallières came to the University of Washington in 1996. He embarked on a new type of tri-modal therapy that combines chemotherapy, surgery, and radiation to shrink, remove, and stave off regrowth of the tumor.

“It’s something I thought of with my oncologist and my radiation oncologist at the University of Washington when I moved there in ‘96. I had already tried it in Canada. The idea of giving patients chemotherapy first, then taking them to surgery, and then treating them with radiation was a way of combining these three standard treatment methods and trying to get the best out of each.”

Dr. Vallières has used this tri-modal therapy for the last eight years in Seattle, and he continues to employ it as the Surgical Director of the Lung Cancer Program at the Swedish Cancer Institute. His expertise with mesothelioma has made him the leading surgeon for this illness in the Pacific Northwest. Most of his patients are referred to him by local pulmonary doctors and pathologists.

“Elsewhere,” he notes, “surgeons will also use a tri-modal therapy, but they start with surgery first and follow with chemo and radiation. Our theory is that by battering the tumor first with chemotherapy and achieving a decrease so that the tumor is in retreat when you operate, you have a better chance of getting out the most tumor possible while also preventing a systemic recurrence far from the original tumor site.”

Pioneering work on the sharpest spear in the mesothelioma arsenal

Vallières was fortunate at the University of Washington to be working with Drs. Bob Livingston and Keren Hunt, medical oncologists who had co-authored in 1996 an important article in the prestigious Chest medical journal. This landmark study showed that in one small cohort of 17 inoperable mesothelioma patients, the combination of methotrexate, vinblastine, and cisplatin yielded an overall response rate of 53% and a projected 2-year survival of 35%. This was, according to Dr. Vallières, “significantly better than previously reports with such advanced disease.”

This work with methotrexate, a member of the folate antimetabolite group of anti-cancer drugs, occurred at the time that chemist Edward Taylor of Princeton University was already doing research with pemetrexed (known to you probably as “Alimta”). The impressive results from methotrexate spurred further interest in pemetrexed and funding from pharma giant Eli Lilly, who, together with Dr. Taylor, rolled out Alimta in 2004 as the first FDA-approved treatment for malignant mesothelioma. The Alimta cohort involved 448 patients, substantially more than the small study with methotrexate, and the effectiveness of Alimta, cisplatin, and vitamin supplements increased median survival time to 13.31 months, tumor regression occurred in 46% of the cases, and extended the time until the disease began progressing again to 6.1 months.

By drawing early clinical attention to the effectiveness of folate antimetabolites such as methotrexate, the University of Washington group played a key role in stimulating interest and research in the chemotherapy cocktail that is now the only standard, approved treatment by the FDA for mesothelioma.

The devil is in the details

“Unfortunately,” says Dr. Vallières, “you can’t peel off the pleura from the diaphragm, so you have to remove the diaphragm with the lung in order to remove the tumor. Nor can you peel off the cancerous pleura from the pericardium, which is the envelope around the heart. So in an effort to remove all the cancer, you also have to remove part of the pericardium.”

In a deposition for Richard Walmach’s mesothelioma case in early 2007, Dr. Vallières explained to the jury which patients are eligible for the extra-pleural pneumonectomy:

Roger Worthington: So not every patient you see with malignant mesothelioma is eligible for the type of surgery that you do?

Dr. Eric Vallières: Most candidates are not.

Roger Worthington: What makes a patient ineligible for the extra-pleural pneumonectomy?

Dr. Eric Vallières: Well, there are three categories. One is their ability to withstand treatment, so it’s a big operation, and they have to have adequate cardiac and pulmonary reserves to withstand the surgery, number one; number two, the type of mesothelioma they have. I’m very selective. If they have non-epithelial malignancy, I will not offer this surgery, and thirdly there has  to be no evidence that the disease has spread outside of the lining itself…the majority of folks are non-candidates because they’re older; they are not fit; they have lung disabilities, cardiac issues, and they cannot handle this treatment.

If it were simply a matter of doing a perfect job on an extraordinarily delicate and complex surgery skirting the heart, lungs, diaphragm, esophagus, and major veins of the heart, Dr. Vallières would by now have racked up a perfect record against mesothelioma. He’s that good and that experienced as a surgical oncologist.

But after the surgery, which removes the affected lung, an array of recovery details come into play that often bedevil the patient’s well-being. “The commonest complication is fatigue,” he says. “Think about it. The patient has now been treated for six or seven months continuously, no respite. Imagine running a full marathon every day for seven months. Now imagine doing it when your physical condition is at its weakest, often when you can’t even eat. Now imagine that that would be easy compared to what a mesothelioma patient goes through.”

Dr. Vallières continues: “Patients get significant, prolonged doses of chemo, then they get radical surgery, and just as they are recovering, bang, here comes the radiation that can be so intense that it actually burns the esophagus so that it’s too painful to swallow. Fatigue and depression can be just as tough an enemy as the cancer itself.”

Getting mesothelioma in his sights

This cycle, repeated over so many patients, led Dr. Vallières to engage in a clinical trial through which the efficacy of his tri-modal approach could be tested. He and a colleague, Dr. Douglas Wood, formed an interdisciplinary team and began accepting mesothelioma patients at the University of Washington in Seattle. Dr. Wood acknowledges that treatment regimens to date have been largely ineffective in substantially prolonging the life of mesothelioma patients. The University of Washington approach is designed to take the best treatments from other regimens and combine them. It may take another decade to determine the efficacy of this approach, but according to Dr. Vallières, it is well worth the effort.

“Mesothelioma has lagged so far behind other cancers in terms of research. If you look at ovarian cancer, which has a similar incidence in terms of diagnosed cases, the progress in mesothelioma treatment has been abysmal. We have to begin rigorously testing the various treatment modalities to find out what works. As a treater, you want to believe that you’re doing the best thing for the patient. Ideally you need randomized phase III trials to evaluate the efficacy of new treatments such as these. Whether such trials will ever be completed for mesothelioma is questionable since the number of patients who are candidates for aggressive treatment is small and it would take too many years for a trial to accrue enough patients to reach statistical significance. For this reason, we have to rely on prospective evaluations of new approaches and compare to historical results.”

With a median survival of 4-18 months and a treatment environment in which there continues to be no accepted, effective curative treatment, the enthusiasm that prompted new approaches in the 1970’s and 1980’s has devolved into a nihilistic philosophy towards finding a cure. Mesothelioma patients are often told to “get their affairs in order” or “take a cruise to Tahiti.” Encouragement and hope have been in short supply as an overall palliative attitude to mesothelioma patients is the clinical rule. The use of the various treatment modalities have all been reported alone or in various combinations but each has been a small, non-randomized trial, with no effect on long-term survival when compared to historical controls of palliative care only.

“The purpose of our trial is to evaluate a combination regimen in an induction mode, followed by a complete resection by extra-pleural pneumonectomy, and then radiation,” says Dr. Vallières.

A combination approach

Understanding the need for a tri-modal approach begins with the fact that surgery alone rarely prolongs survival. Dr. Vallières explained this to the Walmach jury.

Roger Worthington: Have there been proven in the medical literature any long-term survival benefits for patients who undergo extra-pleural pneumonectomy?

Dr. Eric Vallières: Surgery alone, there’s no great data to support it, but as part of a combined approach where you add chemotherapy and radiation therapy, there is some series that suggest that for the right patient there is a group of patients that benefit from this. These are patients who are young, fit, and healthy, have epithelial mesothelioma, in whom you find no nodal involvement at the time of resection.

He continued: “Single treatment modes to early stage mesothelioma have never been shown to improve survival. Originally, aggressive radical surgery saw 30% of patients never leave the hospital alive.. Improved patient selection, better surgical techniques, and better peri-operative care have reduced those rates to 0-9%, but surgery alone doesn’t seem to work,” he says. “In my opinion, for most surgical candidates, the extra-pleural pneumonectomy, which removes the entire lung and pleural surfaces, remains the most effective way to get a handle on the tumor. Unfortunately, the tumor commonly recurs. The combination of surgery and radiation therapy is attractive: it enhances local control over the tumor.”

Explaining the rationale behind the multi-modal therapy, Dr. Vallières explains: “You have to keep in mind that systemic failures are common after the surgery. One trial reported that 11 patients out of 17 who survived the surgery wound up with tumors that recurred distant from the original local tumor. It seemed to us that the addition of an effective, systemic chemo regimen was therefore necessary, even in the early stages. We know that our experience with this chemo regimen is small, but to our knowledge no other chemotherapeutic regimen has shown such promising early results. The bottom line is that we’re hoping to improve outcome and survival.”

The human touch

Staying engaged means more than grappling with the intricacies of surgery and the complexities of designing a reliable research protocol. More than anything, it means staying engaged with the patients and the families that have to live with mesothelioma. The personal engagement and concern that made Dr. Vallières a natural choice among students for teaching awards in 1987, 1988, 1989, 1991, 1992, 1996, and 1999 are the same characteristics that make him beloved by those he treats.

“When Dr. Vallières first saw Bob on the ventilator, he became very, very concerned! He took it so personal!” says the wife of patient Bob Dyer.

Patient Robert Treggett praised the surgical skills of Dr. Vallières, noting that “his precision left only a few areas so minuscule that the radiology treatment plan had to be redesigned to target the exceedingly small areas.” Mr. Treggett just finishing a trip to Africa – five  years after his EPP .

With one hand on the gearshift and the other on the pulse of his patients, Dr. Vallières works compassionately and tirelessly, as a healer, mentor, and friend on the frontiers of treatment for this terrible disease.
To contact Dr. Vallières:

Eric Vallières MD FRCSC
Thoracic Oncology
Swedish Cancer Institute
1221 Madison Street suite 400
Seattle, WA 98104
Phone: 206.215.6800
Fax:     206.215.6801
email: eric.vallieres@swedish.org

Surgeon, Teacher, Advocate, Regular Guy

Dana Point, CA. Dr. Eric Vallières and Dr. Christine Lee join Roger Worthington at a mesothelioma research fundraiser on February 10, 2007, featuring Jordan Zevon and Chris Botti.  A contributor to the Punch Worthington Lab, Dr. Vallières has also been a member of the Science Advisory Board of MARF since its inception in 1999.


Mesothelioma science news update

October 19, 2007

San Pedro, CA, October 18, 2007
The Law Office of Roger G. Worthington, P.C.

1. Intensity-modulated radiation therapy and 3D-conformal radiation therapy are both suitable for mesothelioma. Link here.

2. Alpha-TOS ineffective at inhibiting tumor development mice with peritoneal mesothelioma, and results in severe side effects. Link here.

3. Patient with rare pericardial mesothelioma extends average 6-month survival to 16 months with carboplatin + pemetrexed regimen. Link here.

4. Tumor serum markers CEA and SMRP were able to discriminate with high sensitivity between mesothelioma and non-small cell lung cancer; Cyfra 21.1 proved useful discriminating between normal versus malignancy. Link here.

5. Risk of mesothelioma increases from second-hand asbestos exposure, but mortality from lung cancer does not increase. Link here.


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


Call for asbestos ban in Canada

October 10, 2007

CBC News
Tuesday, Oct. 9, 2007

Four decades since Canadians first became aware of the danger posed by asbestos, some experts are calling on Canada to stop mining and exporting the material.

Jim Brophy, director of the Occupational Health Clinic for Ontario Workers (OHCOW), said the clinic receives calls almost every day from workers about some type of asbestos-related health problem.

Vermiculite, long used for insulation in Canadian homes, was just one of the many common products developed from asbestoes. Vermiculite, long used for insulation in Canadian homes, was just one of the many common products developed from asbestoes.

Brophy, an internationally recognized expert on the risks of asbestos, added that the frequency of calls to the clinic is higher this year than in each of the last three years. He said the number of worker deaths from asbestos exposure is expected to peak in the next decade.

Asbestos is a fibrous mineral that’s used for many industrial purposes around the world, and can be found in ceilings, walls and pipes. There are several types, but the most common asbestos is chrysotile.

It becomes a health hazard when the asbestos fibres are inhaled and become lodged in the body, increasing the chance of developing diseases, such as mesothelioma, a deadly cancer of the lungs.

The OHCOW fears mesothelioma, which can take decades to develop, will soar in coming years. Yet in Canada, there is no one keeping track, Brophy said.
Continue Article

“We’re probably alone among the industrialized countries in not documenting the extent of the disease and its impact on our society,” he said. “This is the leading cause of occupational disease and occupational mortality in Canada today. Completely under the public health radar in this country.”

Brophy said almost all international health agencies — including the UN’s International Agency for the Research of Cancer, the World Health Organization, the International Labour Organization and the Canadian Cancer Society — have called for asbestos to be banned.
Canada leading exporter

Canada, which first began mining asbestos in 1879, continues to mine the mineral in Quebec and exports it to many developing countries where it’s used mainly to strengthen cement. Canada, which is one of the world’s leading producers of asbestos, is among the few developed countries that hasn’t banned the material.

The government’s defence of chrysotile has two planks: that recent science proves this type of asbestos is much safer than others; and that properly handled, Canadian asbestos is safe to use.

Ottawa and Quebec City spend millions on trade promotion through the Montreal-based Chrysotile Institute, run by the non-profit organization’s president, Clément Godbout.

While Godbout said asbestos used properly is not deadly, he avoided calling it safe.

“There is some propaganda around this subject,” said Godbout. “There is also commercial interest around this subject. There are lots more dangerous products and substances than chrysotile. For example, in some countries, they are building arms to kill people.”
Defence a delusion: expert

Barry Castleman, a leading American occupational health scientist who advises many of the global bodies which now ban all use of any asbestos, calls Canada’s concept of “safe use” a delusion.

“Because it’s been given up on in so many countries as hopelessly dangerous and unnecessarily so, Canada’s view is very much a minority view,” he said. “It really would be crucial if Canada, instead of pressing for its right to export more asbestos to the local chapters of the asbestos mafia in the Third World, would join the rest of the civilized countries of this world in shutting down the asbestos industry and saying enough’s enough.”

Retired electrician Bob Blakey, who worked around asbestos for 40 years in Sarnia, Ont., and watched five of his co-workers die from mesothelioma, wants to see the government ban asbestos use and production.

“Every other country is trying to ban it,” he said. “European countries have got bans on it and Canada is out there pushing this product like a dope dealer. … I think it’s criminal.


Mesothelioma science news

October 9, 2007

San Pedro, CA – October 9, 2007

1. Restricted field radiation therapy provides an improved method for radiating a complex target after extrapleural pneumonectomy. Link here.

2. First exposure to asbestos as related to later development of mesothelioma. Link here.

3. Outline of the evidence supporting the conclusion that asbestos from brakes can and does cause mesothelioma, and description of attempts to fabricate doubt about this conclusion. Link here.

4. Asbestos exposure causes increased cancer of the pleura and leukemia among Savannah River Site workers. Link here.

5. Prognostic factors in the treatment of pleural mesothelioma. Link here.

6. Bortezomib causes cell death and in vivo tumor regression in malignant mesothelioma and has led to a phase II clinical trial currently enrolling in Europe. Link here.

7. The addition of intermittently dosed Gleevec to Gemcitabine at low to full dose was associated with broad antitumor activity and little increase in toxicity in three mesothelioma cases. Link here.

8. Rare case in Australia of spontaneous regression of mesothelioma with no recurrence. Link here.

9. Mesothelioma epidemic in Trieste continues. Link here.


Paul Zygielbaum praises Senate passage of Ban Asbestos Act

October 9, 2007

Friends,

Today marked an important milestone in the battle against asbestos poisoning in the US. By unanimous vote, the US Senate passed SB 742, the Ban Asbestos in America Act of 2007. This bill, which many activists and advocacy groups have worked long and hard to realize, would ban the presence of asbestos in products in America.

The bill calls for mandatory testing of products by the government to identify where asbestos is to be found, funding for medical research under the Department of Defense and civilian departments, establishment of a medical database on asbestos related diseases, and public education on these issues. The bill allows exemptions only for NASA and the military, and temporary exemptions for one type of chlorine production facility and (reportedly, although I haven’t verified this) crushed stone production. The bill was authored by Sen. Patty Murray, (D-WA) and was managed by the Committee on Environment and Public Works (EPW) under Sen. Barbara Boxer (D-CA).

We owe a great debt of gratitude to Senators Murray and Boxer, as well as Senate Majority Leader Harry Reid (D-NV), Senate Assistant Majority Leader Dick Durbin (D-IL), and Senator Johnny Isakson (R-GA) for their leadership and support, as well as the hard work and support of their staffs. Sen. Isakson, in particular, had the courage to cross party lines and generate support for the bill on his side of the Aisle. Their effectiveness is reflected in the unanimous vote, which followed the bill’s unanimous passage by EPW. Considering the acrimonious history of asbestos regulation, litigation and legislation over decades, the unanimous votes are especially gratifying.

We still have to get through the House vote on the companion bill, HR 3285, the bills must be reconciled as to any differences, and then the President must sign the final bill into law. Then we have to support the financial appropriation and administrative actions needed for implementation. But today’s Senate vote is an important and hard-won milestone on the way to ending asbestos poisoning in America.

Michelle and I look forward to the day when that is a reality.

Thanks to everyone who has supported us along the way. We’ll keep up the fight until it’s done.

Paul
ADAO volunteer, mesothelioma survivor, and advocate