My Observations: Don't Sit Back - ATTACK!

Since 1989, I have represented about 100 patients with malignant mesothelioma. The textbooks generally concur that mesothelioma is incurable. However, I have had several clients who have survived several years beyond their prognosis. Age, pain, weight, tumor cell type, past medical history, location of tumor, and gender are all factors. Another major factor, often understated, is the patient's will to live.

Many of my clients have been diagnosed by doctors in remote country hospitals. I suspect that too many doctors read the word "incurable" in an outdated medical textbook and simply advise their patient to "go home and tidy up their affairs." But options are available.

The purpose of this website is to educate mesothelioma patients and their loved ones about their cutting edge medical and legal options. In many cases, it may become necessary for the patient to educate his doctors about current treatment options and ongoing protocols for mesothelioma. This is an ongoing website. Any comments, suggestions or advice would be appreciated.

Every patient is different, but I have observed a pattern among my clients regarding their symptoms, diagnosis, treatment and prognosis. Here is a summary of my observations.

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The patient first consults a doctor because of pain in his rib cage or shoulders, fatigue, and shortness of breath. Some patients are symptom free. Without a chest film, some doctors will simply diagnose "bursitis" or "depression." A chest x-ray, however, may reveal an accumulation of fluid in the linings of one of the lungs (i.e., a pleural effusion). The doctor may then perform a pleuracentesis to drain the fluid. A pathologist will examine the fluid (cytology) for the presence of malignant cells. Usually, the fluid is non-diagnostic for a malignancy. After the drainage, a mass may still be present on chest films or a CT scan.

The doctor may then perform a CT guided bronchoscopy, a procedure where a tube is inserted down the nose and pushed into the large airways, where fluids can be scraped from the walls and examined for the presence of malignant cells. If the fluid samples are inadequate, the doctor may order a needle biopsy, a procedure in which the doctor removes tissue from the lung linings or directly from the mass, if one exists. The doctor must be careful to avoid puncturing the lung, where the tumor cells can track and invade the incision port.

If the pathologists are unable to render a clean diagnosis, the doctor may order an open lung biopsy, or thoracotomy. At this stage, many surgeons will diagnose mesothelioma based on the appearance, pervasiveness and location of the tumor. It's very important that sufficient tumor and tissue be removed on biopsy to render a reliable pathologic diagnosis. Currently I am representing a 38 year old former roofer with seven children. The first round of pathologists diagnosed peritoneal mesothelioma. The second round of pathologists at a different hospital diagnosed possible adenocarcinoma. His treatment options were directly linked to the cell type of the tumor. Because of his youth and general good health, he wanted to be aggressive, and began searching for a hospital that would surgically remove the tumor and/or administer chemotherapy.

However, he did not want to face surgery or chemotherapy if he did not in fact have mesothelioma, of if he did have mesothelioma, he did not want to undergo surgery if this would preclude him from participating in certain mesothelioma protocols. Tough decisions needed to be made, and time was of the essence. So we arranged for a third opinion with pathologist Dr. Sam Hammar, a world reknown mesothelioma expert. Dr. Hammar quickly reviewed the pathology specimens and rendered a diagnosis which solved the mystery and my client is now receiving the proper care. The point: make sure the tissue/tumor specimens are adequate, and make sure your pathologist is an expert on asbestos tumors.

Many oncologists will admit that the best hope for a mesothelioma is a reliable diagnosis from an expert pathologist. The cell types of the mesothelioma, i.e., epithelial vs. sarcomatous vs. mixed, is an important prognostic factor. If the biopsy is positive for mesothelioma, the doctor should inform the patient of the following options, at a minimum

1. In order to prevent recurrent pleural effusions, a talc pleurodesis may be performed (bleomycin or tetracycline may be used instead of talc). The doctor will surgically attempt to bond the inner and outer pleural linings (the visceral and parietal pleura) with talc powder. Doctors will attempt to "sclerose" or scar the pleural linings together, thereby cutting off the tumor's path of migration. This can help stop effusions from recurring or slow down their frequency and severity.
   
   

2. Depending on the age of the patient, past medical history, the staging of the tumor, and the location of the tumor, the doctors may consider an extra pleural pneumonectomy (removal of lung and linings). The survival rate for this radical surgery is moderately low, but recent protocols suggest an upward trend. In this website, we mention medical articles by Dr. David Sugarbaker at the Brigham and Womens Hospital in Boston. Dr. Sugarbaker's team is highly regarded as offering the most advanced surgical treatment options and his success rate is probably the best in the country. I have had a client in Dallas who underwent the trimodal treatment, Kay Bilder. The mesothelioma patients who survive the longest generally have received some form of the trimodal treatment, e.g., Stephen Jay Gould and Marge Levine
   
   Brigham and Women's Hospital (BWH)'s "trimodal" protocol regimen consists of: (1) extra pleural pneumonectomy (removal of lung and lung linings and part of diaphragm, (2) followed by post operative chemo (doxorubicin, cyclophosphamide, and cisplatin for 4 to 6 cycles), and (3) radiation therapy (55 Gy). BWH stated in an article in Chest dated June 1995 that their trimodal therapy has an acceptable morbidity and mortality rate in selected patients. Patients must meet a rigorous eligibility checklist. Dr. David Sugarbaker, Dr. Raphael Bueno and Dr. Stephen Mintzer are a few of the surgical oncologists who have successfully performed this procedure.
   
   Research trials using the "trimodal" therapy have also been conducted at Sloan Kettering in New York (Dr. Valerie Rusch), M.D. Anderson in Houston (Dr. Don Chin), the National Cancer Institute in Bethesda, Maryland, and the University of Pennsylvania (Dr. Larry Kaiser), among others. If the patient is experiencing weight loss, shortness of breath, fatigue and a medical history of heart attacks, this procedure is not advisable.
   
   

3. Radiation therapy. In the early stages, radiation may be used to shrink or retard the growth of a discrete tumor. However, in advanced cases this option alone will not cure the mesothelioma, but it may ease the pain and/or slow its spread.
   
   

4. Chemotherapy. Chemotherapy by itself has a poor track record as a cure for mesothelioma. Generally, chemotherapy (depending on the drugs used) is indicated if a tumor mass is present. I have had clients who have used Taxol, among other more conventional drugs (doxorubicin, cisplatin, mitomycin). An experimental drug, Onconase, is now being used in Phase II clinical trials in Knoxville, New York and Austin, Texas. The University of Pennsylvania is conducting a Phase I trial using "gene therapy." This approach is designed to target the tumor directly with a "suicide gene" instead of the conventional shotgun approach of deluging the body with toxic drugs and hoping that the tumor dies first.
   
   

5. Palliation only. Mesothelioma can be excruciatingly painful during the latter stages as the tumor presses upon the rib cage, abdomen and/or heart. Demerol and morphine (via a continuous drip delivery system or in pill form) are usually administered during that time. Anti-depressants may also be prescribed. I have represented a 62 year old mesotheliotic with chronic pain who underwent a percutaneous cordotomy, or "nerve block", which involves an incision into the nerves in the spinal chord. The procedure is risky, as it could cause paralysis, neurologic damage, respiratory failure and/or the need for additional surgery. The procedure essentially deadens selected nerves.
   
   

6. Non Conventional approaches. One of my clients, Charles Talbert, was advised to seek treatment from Dr. Sugarbaker by his pulmonary doctor in Anchorage. However, for a number of reasons, Charles was not a candidate. So Charles went to the IAT Clinic in the Bahamas. Gabe Hoz also went to the IAT. Neither Charles or Gabe can point to great results; but another client, has reported excellent results. Everyone is different.
   

I have had several clients who considered non-conventional modalities, such as shark cartilage, laetrile (cyanide and vitamin B17), essiac tea and coffee enemas. I have had clients visit the Livingston Clinic in San Diego. You may recall that the late actor Steve McQueen sought laetrile treatments in Mexico for his mesothelioma over a decade ago.I have a client in Alaska who is a native indian. He was prescribed various herbs and barks and elixirs by his tribe's shaman. He wants to go to Mexico for laetrile treatments (which Steve McQueen tried unsuccessfully). Several oncologists I have spoken to, including Dr. Bueno, are skeptical about any "experimental" protocol outside the country where the clinic requires the patient to pay up front before receiving treatment.

Many survivors have touted the benefits of meditation. Marge Levine was operated on by Dr. Sugarbaker (who's email address is djsugarbak@bics.bwh.harvard.edu ) in 1989. Since her diagnosis, Ms. Levine has practiced meditation and deep relaxation, among other non conventional healing therapies. She has been mesothelioma free ever since. She has dedicated her life to helping other mesothelioma patients and their families cope with this dread disease. Ms. Levine is associated with the Institute of Noetic Sciences. Book stores are teeming with literature on coping with and overcoming cancer. This website also contains several links to hospitals, universities and medical agencies where free information is available.

As Marge will tell you, don't be passive. Read everything. Find the program that suits you best. You are your best medical advocate. You must fight. As Stephen Jay Gould says: "It has become a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die -- and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy -- and I find nothing reproachable in those who rage mightily against the dying of the light." Professor Gould has written several excellent books on evolution since he underwent surgery for his peritoneal mesothelioma in 1982.

Put another way, fight until hell freezes over, and when that happens, grab a warm coat and an icepick.

There is no question that mesothelioma is caused by asbestos. We have been able to prove that the asbestos companies were aware of the health hazards associated with asbestos as far back as 1900. We have also proven that asbestos-related cancers were first discussed in the medical literature in the early 1940's.

There is no safe exposure level to asbestos fibers that will prevent mesothelioma. I have represented insulators, who have had intense, daily exposures, and daughters of insulators, who helped wash their father's asbestos fiber contaminated work clothing. We recently won two jury verdicts on behalf of two mesotheliotics: Mrs. Kay Bilder and Mr. Delmer Smith

Kay Bilder's only exposure was through her father's work clothing (he was an insulator) when she was 13 to 16 years old. She underwent the tri-modal surgery, chemotherapy and radiation in Dallas.

Delmer Smith was a pot insulator at the Alcoa Aluminum Plant in Wenatchee, Washington. He was not a candidate for surgery and he elected to forgo chemotherapy and radiation.

This Website is a "work in progress." If you have any information about new methods for treating mesothelioma, please respond. If you have a personal story and would like to share it with others, please write.

Remember: Don't sit back -- Attack!

Roger G. Worthington, Esq.
1-800-831-9399
214-902-9797 (Dallas, Texas)
949-496-5818 (Dana Point, California)

*** POSTED 1996 ***