Pacific Meso Center Blog

Mesothelioma Patients and their families meet in a spirit of camaraderie in beautiful surroundings

2011-10-05T07:33:00.000-07:00

Mesothelioma patients, their families and Dr. Robert B. Cameron attended a special luncheon at the Stone Brewery Bistro and Gardens in Escondido, Calif., on Sunday, Sept 26.

People at the gathering shared the common thread of this uncommon disease, reminding them they are not alone and always have someone to turn to for emotional support.

Clare Cameron, executive director at the Pacific Meso Center (PMC) of the Pacific Heart, Lung & Blood Institute (PHLBI), in addition to hosting a round of introductions, discussed National Mesothelioma Awareness Day, held on Sept. 26 each year.

Clare Cameron

It began in 2004 as a grassroots movement for recognizing those whose lives have been impacted by a mesothelioma cancer diagnosis and the need of a national ban on asbestos containing materials and products. Ms. Cameron has a goal to encourage California’s legislature to join a growing number of states that have passed a proclamation declaring Sept. 26 at Mesothelioma Awareness Day.

During the luncheon a Certificate of Appreciation was presented to Pat Crawford for donating more than $88,000 to mesothelioma research.

A Certificate of Appreciation was also presented to David & Pilar Vanderhyde for donating over $115,000 to mesothelioma research. Attendees at the luncheon were able to meet other mesothelioma survivors, current patients and those who lost loved ones to it. They also got an update from Dr. Cameron.

Clare with Pat Crawford

When lunch was over Dr. Cameron spoke about PHLBI opening of new laboratory at 10780 Santa Monica Blvd. He also discussed the first research project targeted to begin in the new laboratory in October. It will be on stromal cell research and the re-engineering of stromal cells implanted during surgery.

Dr. Cameron is a renowned cardio thoracic surgeon and surgical oncologist who has specialized in the treatment of malignant pleural mesothelioma for over 25 years. He is the director of the mesothelioma program at the David Geffen School of Medicine at the University of California and the chief of thoracic surgery at the West Los Angeles Veterans’ Administration Medical Center.

Dr. Robert Cameron

Dr. Cameron is also the Scientific Advisor to Pacific Meso that is part of The Pacific Heart, Lung & Blood Institute, a 501(c)(3) non-profit medical research institute. Pacific Meso is a comprehensive research and support center for malignant pleural mesothelioma.

For more information on making a donation click here. The Pacific Meso Center also has a page on Facebook.

Mesothelioma, an asbestos-caused cancer, is diagnosed in close to 3,000 Americans each year. 90,000 people worldwide die each year from asbestos-related lung cancer, mesothelioma and asbestosis.

Family Decimated By Asbestos “Fairy Dust” Makes Public Plea For Government And Industry To Take Action So Others Can Avoid The Same Nightmare

2011-09-02T11:30:00.000-07:00

For 25 years, Wolfgang Von Palleske would come home every day from his job at the Johns Manville asbestos plant near Toronto, throw his arms open, and greet his wife Doreen and daughters Heidi and Aurora with a big hug. As they shared this warm greeting, little bits of asbestos clinging to Wolfgang’s work clothes would float into the air and sparkle. They called it “fairy dust.” What they didn’t know was that the “fairy dust” which seemed so magical and whimsical at the time would ultimately claim the lives of both Wolfgang and Doreen.

Wolfgang died four years ago following a bout with mesothelioma, a rare form of cancer caused by exposure to asbestos. Doreen died only a few weeks ago following her own bout with mesothelioma. Doreen never personally worked with asbestos. Her exposure was from the asbestos or “fairy dust” brought home from the Johns Manville plant on Wolfgang’s work clothes.

Heidi and Aurora were with their mother when she died. The memory of those last few hours will stay with them forever. Today, Heidi and Aurora live in fear that they may be the next victims of the “fairy dust.” They have both had CT scans of their lungs. Heidi’s lungs are clear, at least for now, but Aurora has significant scarring and liquid on her lungs, a worrisome condition that is almost certainly due to asbestos exposure. Both sisters will have to be monitored closely for the rest of their lives.

Rather than sit back and lament their family’s grave misfortune resulting from their father’s work for Johns Manville, Heidi and Aurora are taking action to try to prevent other families from experiencing the same nightmare.

The nation of Canada does not allow asbestos to be used in products sold in Canada, However, Canadian asbestos mines currently export hundreds of thousands of tons of asbestos to countries such as India, Vietnam, Cambodia, Thailand and others where there are lax or non-existent regulations on asbestos. In addition, efforts are being made by a foreign consortium to purchase the world’s largest asbestos mine in the city of Asbestos, Quebec, with assistance from the Canadian government, and further increase asbestos production.

The callous disregard for the effects of Canadian asbestos exports was recently exhibited by Canadian asbestos mine owner Bernard Coulumbe when he stated in an interview on national television in the United States that it’s ok to sell asbestos to India because “they are used to pollution.”

Even more callous is Canada’s recent blockage of an effort by the United Nations to add chrysotile asbestos, a known carcinogen, to an international list of hazardous chemicals.

In a plea to right this grave injustice, Heidi sent the following letter to Quebec Premier Jean Charest:

Dear Mr. Charest:

I have recently read that you are extending your deadline on the Jeffrey Mine application for financing their expansion. Was this not the same mine that was once owned by the now bankrupt John's Manville Company. Certainly Mr. Coloumbe worked for Johns Manville before he worked for the jeffrey Mine. And Johns Manville once boasted the largest open air asbestos mine in North America -- located in Quebec.

Your extension was granted a week and a day after the death of my mother. My mother died from para-occupational (chrysotile) asbestos exposure. I was with her as she fought for each breath. The time was measured in seconds, not minutes as she gasped and squeaked and gurgled. Although she was plugged into an oxygen machine, the mesothelioma had advanced to the point that the oxygen could not be circulated. Her legs slowly turned bluish purple, as did her hands. "I doubt she will last the night" the nurse said. So I waited with my sister. Squeezing water into her mouth, drop by drop. Trying to hear her as she started a mantra -- saying each child and grandchild's name... adding "love you" in an inaudible whisper. The image of the last few breaths will stay with me forever. The gasp, the shudder, the shudder again. Then nothing. Then suddenly another struggled gasp and convulsive shudders. Strangling sounds. Wheeze, squeak, shudder. Nothing. Just a contorted face, a gaping mouth, and silence. Those images will be added to the images of my father's dying which happened 4 years earlier. Same disease. Same killer -- chrysotile. It really does not matter what the Chrysotile Institute tells me. I have watched only two people die in my life and both were my parents. Horrible, horrible deaths. Rasping and torturous. Imagine a pillow over your face and with every breath you try to take, someone presses that pillow a little harder over your nose and mouth. That is the last few weeks for a mesothelioma patient. That is the legacy of all asbestos.

The thing is, when my father worked for Johns Manville, the workers were not informed of the hazards of (chrysotile ) asbestos. Yet Johns Manville had done a study in 1930 which had already determined the dangers. How is it that the Canadian government allowed this company to operate, murdering every employee, and threatening the wives and children of the employees? How did that happen? And how is it that the Quebec Government promotes a substance that every G8 country, excluding Canada, condemns?

I have just read in the Globe And Mail of a family (O'Donnells) in Campbellford. The father also worked at Johns Manville. Father and mother -- both dead. Brother and sister -- both dead. And now the son has also been diagnosed with Mesothelioma. The 48 year old son watched his family die and now that is all he has to look forward to. Once there is a diagnosis from a Cat scan, the patient only has 4-18 months to live. Johns Manville and the asbestos industry wiped out his entire family and now, he too will die. It is three generations that are being punished because the grandchildren will face a life without their parents. My sister and I have been tested with CT scans. My sister has scarring and fluid on her lungs, which is worrying. We will both be doing blood tests for early (if there is such a thing) detection. My question to you is this: If I test positive for mesothelioma, who exactly is going to care for my 11 year old child?

Now how about Bernard Columbe? What a guy! Saying on Jon Stewart that Indians are immune to asbestos fibers because of all the pollution in India. Did the Chrysotile Institution tell him that? And there has been no public apology for the ignorance and racism of that remark! How can the government keep backing an industry whose front man is racist and ignorant? We have seen the documentaries. We know that chrysotile is not being handled properly in India. We also know that the poorest, most needy people are the ones handling the substance. Now you can claim that it is not your concern, that it is the Indian Governments concern, but if we know that our product is causing harm, if we know that Indian Officials are not safe guarding the workers, then aren't we morally obligated to do something? Even if it is as little as allowing chrysotile to be added to the list at the Rotterdam Convention. No, we keep supplying third world countries with the very weapon that will eventually kill the poorest amongst them, and in a most painful manner. There is a word for profiting off the poor. The word is, exploitation. Our government makes any 18th century Imperialist Government look as warm and fuzzy as Mr. Harper's vest!

Excuse me if I seem a bit bitter. I am still dealing with the unnecessary and unfair death of my mother and the fear that my sister, my three brothers or I could also go the same way. My mother's wish, in the end, was that others would not suffer as she has. There is one way, and one way only, to prevent Mesothelioma. Ban asbestos, and the exportation of asbestos, world wide.

Now about your little extension. This is the second one. Why make deadlines when you cannot keep your word and stick to them? I am quite sure that if they don't make this one, you'll just grant another extension....

You know something, your industry doesn't seem all that important to me compared to my mom's dying, my dad's painful death, my sister's scarred lungs and the 55,000 Indian workers and all their wives and children, who will most likely fall to the fate of a painful death from Mesothelioma in 20-50 years.

Sincerly, Heidi von Palleske

Heidi’s 11 year-old daughter Cavanaugh also joined the effort. She wrote the following heart-felt letter to Canadian Prime Minister Stephen Harper during what proved to be the final days of her grandmother’s life:

Cavanagh Matmor to: Stephan Harper,

I am a 11 year old girl and my grandmother is dying of methothelioma, a cancer caused by asbestos. She might be dead right now. My grandfather died of methothelioma because he worked in a asbestos factory. I was in TimHortens when my mom got a call from Aunt Aurora(her sister that lives with grandma Dodee) saying that my grandma was in a coma. Can you stop saying you're right when you`re killing thousands.I don`t want people in india to experience what im going through. We need to make a change and the first thing we can do is stop exporting asbestos

Sincerely,

Cavanagh Matmor

Cavanagh received the following response from the Prime Minister’s office:

Subject: Office of the Prime Minister / Cabinet du Premier minister

Date: Fri, 12 Aug 2011 15:09:14 -0400

Dear Cavanagh:

I would like to acknowledge receipt of your email regarding asbestos.

Thank you for taking the time to write to the Prime Minister and for sharing a description of the circumstances with which you have been dealing. Your efforts to bring this situation to the Government's attention are appreciated and you may be assured that your comments have been carefully noted.

I have taken the liberty of forwarding copies of your message to the Honourable Joe Oliver, Minister of Natural Resources. I am certain the Minister will appreciate being made aware of the situation you have described. This referral is made not out of lack of interest or disrespect, but to allow the officials more closely connected with the issue a chance to provide a meaningful reply to your message.

Once again, thank you for writing to share your experience, and please accept my sincere condolences.

P. Monteith Executive Correspondence Officer

for the Prime Minister's Office

Agent de correspondance

de la haute direction

pour le Cabinet du Premier minister

The Pacific Meso Center expresses its sincerest sympathies for the horrible tragedy that this family has been forced to endure as a result of Wolfgang’s work with deadly asbestos “fairy dust.” We are also moved by the bravery, strength and compassion of the surviving family members as they try to compel government and industry to listen to their family’s story as an example of what will continue to happen to countless others if asbestos is not banned, once and for all, around the world.

For more information, follow these links to radio interviews and articles regarding Heidi and her family:

http://www.cbc.ca/thecurrent/episode/2011/06/27/asbestos-in-the-family/

http://www.cbc.ca/thecurrent/episode/2011/06/30/letters-asbestos

http://www.theglobeandmail.com/life/health/health-facts-and-arguments/asbestos-killed-my-father-now-my-mother-is-sick/article2112055/

lhttp://www.thebarrieexaminer.com/ArticleDisplay.aspx?e=3260706#.Tkw5TY55V7s.facebook

Tour Des Chutes Raises Over $90,000 for Cancer Survivorship

2011-07-18T08:27:00.000-07:00

Bend, Or. The Punch Worthington Lab is pleased to have helped the 7th Annual Tour Des Chutes raise over $90,000 for cancer survivorship programs in Central Oregon.

Chris Horner, L, and Roger Worthington, R,

enjoying their moment in the sun at the

2011 Tour Des Chutes in Bend, Oregon.

Over 1,100 riders, a record, participated in the fun ride, which offered routes between 7 and 100 miles between Bend, Oregon and the Cascade Range. In it's 7th year, the TdC raised over $90,000, another record. Since 2006, the TdC has donated over $430,000 to cancer survivorship programs, including the Livestrong Foundation.

"This was the best year ever, " beamed Roger Worthington, who has emceed the post-race party the last 5 years. "The live music was awesome, the food was delicious, the crowd was animated, the speakers were inspiring and it didn't rain the entire time."

The Punch Worthington Lab, in honor of Dave "Punch" Worthington, a rugged Oregonian crabber and bow hunter who passed away from asbestos cancer in 2006, is affiliated with the Pacific Heart Lung and Blood Institute, a 501(c)(3) medical foundation in Los Angeles. PHLBI dedicated the Punch Worthington Lab at UCLA Medical School in 2005.

The Tour Des Chutes is a non-profit, all volunteer charity which holds an annual fun ride, the net proceeds of which are donated to cancer survivorship programs in Central Oregon. The TdC is the brainchild of Gary Bonacker, diagnosed with inoperable brain cancer five years ago, and is still smiling and looking stronger than ever.

A highlight of the extraordinary day of fun, hope, gratitude, cycling and music was a cameo appearance by local hero Chris Horner, who recently crashed out of the Tour De France. Horner was predicted by insiders to be a podium contender, at the ripe young age of 39. Horner will be hosting the Cascade Gran Fondo in Bend on August 18-20, a multi-day series of rides, lectures and parties, the proceeds of which will benefit local cancer research and advocacy programs.

Punch Worthington

Horner suffered a mild concussion after crashing in France. Worthington jokingly asked him if he recalled their conversation the morning of the crash in which he promised Worthington a spot on the Radio Shack's team bus for next years Tour Des France. Horner, a seasoned and charismatic speaker, didn't miss a beat: "Actually that was the only thing I remembered from that day."

The Punch Worthington Lab has been a yellow jersey sponsor of the TdC the past 5 years and has enjoyed helping the event grow into one of the most prestigious, fun and successful cancer fundraising events in Oregon. The ride registration filled up early this year and the TdC was forced to turn away willing participants, always a tough thing to do by a non-profit. Next year the TdC hopes to raise the ceiling on its registration and expand the venue, but just in case a reminder to sign up early!

Thrive!

Physicians Conclude Unanimously that EPP Should No Longer Be Performed On Patients with Malignant Pleural Mesothelioma

2011-06-21T09:38:00.000-07:00

The 1st International Symposium on Lung-Sparing Therapies for Malignant Pleural Mesothelioma was held at the Sheraton Delfina in Santa Monica, on Saturday, May 21. The meeting was chaired by Dr. Robert B. Cameron who is a board certified cardiothoracic surgeon and trained surgical oncologist specializing in the treatment of malignant pleural mesothelioma who has been involved in the treatment of mesothelioma patients since 1986. He is the director of the comprehensive mesothelioma program at the David Geffen School of Medicine at the University of California, Los Angeles (UCLA) and the chief of thoracic surgery at the West Los Angeles Veterans’ Administration.

A distinguished group of experts from all over the globe, gathered at the Delfina to discuss radical surgery vs. non radical surgery on patients with mesothelioma. There has been some disagreement among some of the world’s top mesothelioma specialists about the value of using radical surgery, Extrapleural pneumonectomy (EPP) for malignant pleural mesothelioma (MPM) as opposed to non-radical surgery, Pleural Decortication (P/D). Dr. Robert B. Cameron stated that “radical surgeries do not provide a safer margin and that there is no reason to be radical and every good reason to be conservative. Recurrences are harder to detect when the lung is removed”.

He went on to say that “the best therapy for mesothelioma has certainly not been defined and that the rationale is to approach things surgically”. He went on to say that PD is a better procedure than the radial EPP. “No group that has reviewed the data to date has accepted that EPP is better than PD”.

(left - right) Mr. David Waller, MD, Mr. Tom Treasure, MD and

Dr. Robert Cameron, MD

Some of the most compelling evidence against EPP came from both Mr. Tom Treasure MD and Mr. David Waller MD, who unveiled their findings from a recently conducted study called the Mesothelioma and Radical Surgery (MARS) trial in the UK. Mr. Tom Treasure is professor at Guys Hospital and Mr. David Waller, is consultant thoracic surgeon at Glenfield Hospital in Leicester. The primary objective of the trial was to review and evaluate the safety and efficacy of EPP for patients with PMP. It was a randomized trial with 50 patients. The trialists’ concluded that the results of MARS make it improbable that EPP offers a survival advantage over any less radical forms of treatment.

The other distinguished panel discussed Radiation Techniques, Adjuvant and Neo-Adjuvant Chemotherapy, Immuno-Gene therapy, Veglin and Other Angiogenisis Inhibitors, Interferon Alpha Maintenance Therapy and Palliative Care.

Help Us Conquer Mesothelioma

2011-04-08T13:08:00.000-07:00

Dear Mesothelioma Community:

I can hardly believe that I have already been at the Pacific Meso Center (PMC) at PHLBI for 3 months. The time has flown by and that is because I am having such a great time in this new job. I have been blessed to have this position which has enabled me to meet the most amazing people that I have ever had the honor of getting to know.

It is always heartfelt to meet patients either newly diagnosed or who are battling through their treatments for mesothelioma. I have been touched by their courage, determination and also by their positive attitudes. They are not going to let this disease get the better of them and they are not going to take it lying down. They are all cancer warriors, and they put their lives in Dr. Robert Cameron’s hands, because he is the best in his profession.

I met Terry Latham and his lovely wife, Maryla when I first arrived at PMC. I was so impressed with Terry and his outlook on life. He came to this country with just $25 in his pocket, and became a very successful businessman in real estate. He discovered he had malignant pleural Mesothelioma in March of 2010 and Dr. Cameron performed the surgical procedure pleurectomy/dectortication on him. His wife Maryla has been very proactive with our Breakaway from Cancer Walk (BfC) and has been soliciting great silent auction items for us.

We want to make a difference with this disease, and so this year my goal is to raise over $1.5 million in funding to open a newer state-of-the-art laboratory here on our premises in Santa Monica. It is an ambitious goal and we have lots of plans in the pipeline to try and reach it. But we can’t do it without your support. Right now you can support us in a couple of ways. Click here to how to donate to PMC.

The Pacific Meso Center is proud to be associated this year with Dana Point Grand Prix Bicycle Event which is in its 5th year, and this year Amgen is sponsoring the event and the new initiative which is Breakaway from Cancer (BFC). PMC will be one of the beneficiaries this year. So please support us in any way that you can.

Why don’t you put on your glad rags and come out for a truly great evening on Saturday, April 30th at the Dana Point Yacht Club for a Cocktail party with Hors d’ouevres, great wine, great beer, great dessert and a fabulous silent auction. Check out some of the exciting silent auction items that we have. Click here to view silent auction page. The evening is from 6:00 – 8:00 p.m. so it gives you time to get home, have a good nap and then join us the following day. Click here to purchase tickets for our Saturday, April 30th event.

We are extending an invitation to all cancer survivors, family members, caregivers, doctors and nurses, to come together and join us on race day at Amgen’s Breakaway from Cancer walk, which is scheduled for Sunday, May 1 at 3:45 p.m. in Dana Point, on the most beautiful bicycle race course in the world.

There are over 1 million cancer survivors who reside in California alone, and the chances are one in four that someone in your family has been affected by some form of cancer. It is important that we all stand together and fight this dreadful disease, but why not do so, while we celebrate that fact that we are alive and we are with our families and friends, or we that we are remembering those who are no longer with us, but who will live in our hearts forever.

Lastly, and importantly the UCLA Mesothelioma Research Program at UCLA is sponsoring the 1st International symposium on Lung-Sparing Therapies for Malignant Pleural Mesothelioma (MPM) in beautiful Santa Monica. Dr. Robert Cameron, MD, FACS, the course organizer and the Director of the UCLA Mesothelioma Research Program has had over 18 years of experience with treating patients with MPM.

The seminar’s distinguished international faculty includes both Mr. Tom Treasure, MD and Mr. David A Waller, MD, who will discuss the recent startling results announced from the Mesothelioma and Radical Surgery (MARS) Trial conducted in the UK. To view a brochure, click here. To purchase tickets you can enroll online at www.cme.ucla.edu/courses or by phone at 310-794-2620.

Mesothelioma community, if you have any questions, please call me at 310-478-4678 or email me at ccameron@phlbi.org.

Best Wishes

Clare Cameron