Author: Nancy Meredith
Father/Daughter Forge Strong Bond Over Mesothelioma Care
When Amanda headed off to college she knew she wanted to dedicate her career to helping children learn to read. Since completing her Master’s in Education, she has gotten satisfaction from watching the children in her classes slowly begin to enjoy reading and to gain confidence in themselves.
It is with this same nurturing and caring spirit that led Amanda to stay by her father’s side as he fights pleural mesothelioma. Although helping him battle cancer was not new, her father successfully fought melanoma nearly eight years ago, Amanda knew that fighting mesothelioma would be particularly challenging.
Her father chose to have his treatment under the care of mesothelioma specialists at the University of Pennsylvania Hospital at Penn Presbyterian Medical Center. The choice was not easy – he would have to leave his wife and sons behind. But with Amanda living in the Philadelphia area, there was no question that he would receive the love and care from her that would help him overcome even the most difficult treatments.
Amanda’s father had to remain in the hospital for six weeks, and she took the time to see him every day. During this time Amanda learned as much as she could about mesothelioma and worked closely with the medical team to ensure her father received the appropriate mesothelioma care. Her father learned that it is okay to lean on Amanda and to trust in her decisions. And through it all they created a bond that brought them closer than they had ever been.
Amanda will tell the story of how her father successfully battled one cancer to only be stricken with mesothelioma years later. She will provide readers information about how the diagnosis, treatment and management of mesothelioma affects an entire family, but through love and strength fighting the disease is a little easier.
Please join us in welcoming Amanda to MesotheliomaHelp.org as she offers articles about helping a family member battle and cope with mesothelioma, and how the disease can help bring a family together.
Mesothelioma Applied Research Foundation Announces Annual Symposium
The Mesothelioma Applied Research Foundation has announced plans for its 11th annual International Symposium on Malignant Mesothelioma. The Symposium, scheduled March 5-7 in Alexandria, VA, is an opportunity for the entire mesothelioma community, including patients, their families, caregivers and advocates, to come together to network and to learn the latest mesothelioma news.
For the first time, the Meso Foundation will sponsor a concurrent seminar for scientists and medical professionals only. The Mesothelioma Scientific Seminar is designed to “facilitate high level sharing of information, collaboration and learning” among mesothelioma specialists. These sessions will be for the scientific community only; however, many of these world-renowned mesothelioma physicians and researchers will be accessible to Symposium attendees.
The Symposium gives face-to-face time for people from so many backgrounds to discuss the reality of dealing with mesothelioma. Rare diseases, such as mesothelioma, are very isolating, and the symposium is an opportunity to get people together to let them know they are not alone in their journey. Attendees have the chance to network, meet with their government representatives, honor their loved ones and learn about what is going on in the field.
The list of speakers at the two-day event is the Who’s Who of mesothelioma experts from throughout the United States and Europe. Keynote speakers include Dean Fennell, PhD, University of Liecester; Michele Carbone, MD, PhD, University of Hawaii and Ira Pastan, MD, National Cancer Institute. Other speakers are Dr. Lee Krug, Memorial Sloan-Kettering Cancer Center, Dr. Robert Taub, Columbia Presbytarian, Anne Tsao, MD, MD Anderson Cancer Center and Hedy Lee Kindler, MD, University of Chicago. All of these speakers have dedicated their careers to improving the lives of mesothelioma patients.
During the event, the Meso Foundation will also present various awards to leaders in the field. Michele Carbone, MD, PhD, University of Hawaii, will be presented with the 2014 Pioneer Award which honors individuals “pioneering” scientific advances in the field of mesothelioma, with the goal of eradicating the life-ending and vicious effects of mesothelioma. Carbone, one of the world’s leading authority on mesothelioma, is credited with significant breakthroughs including determining that the BAP1 gene, which is involved in tumor suppression, might underlie mesothelioma in people with a strong family history of the disease.
“He [Carbone] has been a leader in the field of mesothelioma research, and every one of his many contributions brings us that many steps closer to life-saving treatments for mesothelioma patients,” said Mary Hesdorffer, NP, Meso Foundation’s executive director upon announcing the award.
http://blog.curemeso.org/meso-foundation-congratulates-representative-betty-mccollums-efforts-advance-mesothelioma-research/
The Meso Foundation will also present the winner of the June Breit and Jocelyn Farrar Outstanding Nurse Award.
Mesothelioma is a rare, incurable form of cancer primarily caused by exposure to airborne asbestos fibers that is diagnosed in close to 3,000 Americans each year. Although mesothelioma can be treated with varying degrees of success with surgery, chemotherapy and radiation, there is still no known cure for the disease. The prognosis for mesothelioma patients is an average survival time varying from 4 – 18 months after diagnosis.
The Meso Foundation is one of the leading organizations “dedicated to eradicating the life-ending and vicious effects of mesothelioma.” The Meso Foundation’s activities include funding mesothelioma research, providing education and support for patients and their families, and advocating for federal funding of mesothelioma research.
See the Meso Foundation’s website for more information and to register for the conference.
http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8578185/k.6D0E/Meso_Foundation_Symposium.htm
SMART Protocol Shows “Encouraging Results” for Mesothelioma Patients
Researchers report that treating late-stage mesothelioma patients with a high dose of radiation prior to performing radical extra pleural pneumonectomy surgery results in “encouraging results” and should be further studied.
According to an article in the Journal of Thoracic Oncology, a study conducted by researchers from the Princess Margaret Cancer Center in Toronto with 25 patients with malignant pleural mesothelioma, who were deemed candidates for EPP, underwent SMART treatment [Surgery for Mesothelioma After Radiation Therapy.] The patients had a three-year survival (72%) that was more than double the survival (32%) of patients who underwent other treatment protocols.
Mesothelioma, a terminal form of cancer caused by exposure to airborne asbestos fibers, often has a complex growth pattern making complete surgical removal a very difficult task. The goal of surgery is to achieve a macroscopically-complete resection, which refers to the removal of all visible tumor cells. There has been an ongoing debate among mesothelioma physicians as to the best surgical approach for improving the survival of mesothelioma patients.
Extrapleural pneumonectomy (EPP) is a radical and complex surgery that features the removal of the affected lung and parietal pleura, as well as the possible removal of the diaphragm, the pericardium and other extra pleural tissue. The alternative surgical option, pleurectomy/decortications (P/D) strips away the diseased membrane lining the lung and visible mesothelioma tumors, but spares the lung.
The research, led by Marc de Perrot, MD, Princess Margaret Cancer Center in Toronto, included giving the previously untreated mesothelioma patients five doses of Intensity-Modulated Radiation Therapy. IMRT enables the radiation oncologist to conform the radiation beams to tumors that are actually wrapped around other structures. Within one week of receiving IMRT, the patients underwent EPP.
According to an article in MedPage Today, de Perrot reports an additional 20 mesothelioma patients have undergone SMART treatment and their three-year overall survival is approaching 90%.
The researchers concluded that the results support “future studies looking at long-term outcome in patients with epithelial subtypes [of mesothelioma].”
Mesothelioma is diagnosed in approximately 3,000 Americans each year. The average survival time varies from 4 – 18 months after diagnosis.
Sources:
MedPage Today
ADAO Sponsors First Ban Asbestos Conference in Pakistan
The Asbestos Disease Awareness Organization has announced its support of the first ever one day national stakeholder’s conference Ban Asbestos Pakistan in Karachi, Pakistan on February 1. The event, with the theme “Awareness, Health & Safety,” is the result of years of research, persistence and collaboration between a Pakistani family and an international team determined to ban the toxic substance in the country.
Although the harmful effects of asbestos have been documented extensively, and the World Health Organization estimates over 100,000 people die each year from asbestos-related diseases, including mesothelioma, asbestos use is banned in just 55 countries, according to a tally maintained by International Ban Asbestos Secretariat. Asbestos use remains legal in the United States.
However, the Ahmed family, determined to prevent other families from losing a loved one to the hazards of asbestos, have shown that with diligence and resolve, they can make a difference. When Syed Mezab Ahmed and Syed Haroon Ahmed lost their father and brother, respectively, to cancer in 2007, they feared his death was due to asbestos exposure at his job at Dadex in Karachi, Pakistan. Dadex, which operates three factories in Pakistan – in Karachi, Hyderabad and Sunder Industrial Estate (near Lahore) – boasts on its website that it “has been manufacturing Chrysotile Cement (CC) pipe systems for over 45 years in Pakistan.”
The Ahmed family filed a criminal complaint in 2009 against the factory saying Mr. Ahmed’s cancer was caused by the “polluted environment of the industrial unit.” Although the case is still pending, the action spurred local and global anti-asbestos organizations into action to help raise awareness of the far-reaching dangers of asbestos in Pakistan and to rally others to urge the government to ban the product.
Through a report commissioned on the petition of the Ahmed’s, over two million residents in Karachi were found to be at danger of exposure to asbestos. According to the ADAO, in 2012, Pakistan National Assembly’s Standing Committee on Human Resource Development “recommended a complete ban on the import and use of dangerous chemical ‘asbestos’ in 22 industries of the country to safeguard the health of workers.”
Linda Reinstein, co-founder and President/CEO of the Asbestos Disease Awareness Organization, wrote in an article announcing the conference:
“The Ahmed family wants the same treatment for Pakistanis that other countries have fought for and won. They want the company that exposed people to deadly asbestos to be responsible for their medical care. They want the company to take action and to dispose of asbestos debris safely to prevent future asbestos exposure to workers, children and nearby residents of Karachi. And above all, they want Pakistan to ban asbestos.”
Ms. Reinstein and Lou Williams, a mesothelioma sufferer who lives in Australia and is the Asbestos Awareness, Information and Support Officer of the Bernie Banton Foundation, will be presenting to the attendees, including Pakistani dignitaries and experts in the field of mesothelioma and on the dangers of asbestos, via Skype.
“I am very, very proud of what they are doing with their conference and with the global support of everyone – it will be a good success and a start in the right direction,” said Lou in an email to MesotheliomaHelp.
The International Commission on Occupational Health, the world’s leading international scientific society in the field of occupational health, along with many other global organizations, calls for a global ban on the mining, sale and use of all forms of asbestos and the elimination of asbestos-related diseases. To accomplish the elimination of asbestos-related diseases the Commission urges “each and every individual country to implement a total ban on production and use of asbestos.”
The World Health Organization supports this position and reports that “the only way to prevent mesothelioma is by eliminating exposure to asbestos.” WHO is calling for a ban of asbestos use throughout the world.
See the ADAO website for more information about taking action to ban asbestos to prevent millions of cancer deaths.
Sources:
- Asbestos Disease Awareness Organization
http://www.cvent.com/events/2012-annual-asbestos-awareness-conference/archived-e6277e3d443b4c059bed43fc0937b530.aspx - ADAO website
http://www.asbestosdiseaseawareness.org/archives/19485 - International Commission on Occupational Health
http://www.icohweb.org/site/news-detail.asp?id=83 - two million residents in Karachi
https://www.thenews.com.pk/archive/print/631672-two-million-karachiites-face-cancer-threat - Dadex
http://www.dadex.com/product_services/pipesystems_and_roofings/chrysotile_cement.shtml - International Ban Asbestos Secretariat
http://ibasecretariat.org/alpha_ban_list.php
Nurse Encourages Mesothelioma Screening for Family Members
Mesothelioma is difficult enough to deal with when your loved one has been diagnosed with the disease. But if that is not enough to deal with, there is one more thing to think about: could it be possible that you are also susceptible to developing mesothelioma? Many people know where they were exposed to asbestos, but others may be unaware that they were exposed at all. Some people were exposed to asbestos after their parents or grandparents inadvertently brought the asbestos fibers home on their clothes from their jobs where asbestos was present. It is possible to develop mesothelioma from this secondhand exposure.
Although it may only be one offspring that demonstrates mesothelioma symptoms and seeks medical attention, my advice would be that all other family members be tested for mesothelioma. I recently ran into a patient who was diagnosed with mesothelioma, after her sister was diagnosed. Unfortunately, it does not stop there; another sibling has subsequently been diagnosed with the asbestos cancer.
Researchers have done a lot of work in this area. They have found that some people have an inherited gene that makes the patient predisposed to developing mesothelioma once exposed to asbestos. Not everyone exposed to asbestos will develop the disease, but if someone in your family has it is imperative to get yourself tested. Now, it is possible to be diagnosed early and without any symptoms evident. If you are not feeling symptomatic and you are diagnosed with mesothelioma, it could be in the early stages where you have the most favorable outcome.
Although this can be very scary, it is in the best interest of you and your family to know. It is hard to wrap your head around this, that you too could be affected with mesothelioma, but it may save your life.
Diagnosis with mesothelioma is usually confirmed with a biopsy. Every cancer center does testing differently, but it usually starts with a biopsy where a tissue sample is collected and sent to the pathology lab. When someone develops fluid around the lung, and has to have it drained or tapped, a sample of the fluid can also be sent off for pathology.
Tissue and fluid samples are the most common means of diagnosing mesothelioma, but a blood test can also help doctors identify the disease. The presence of molecular indicators called “biomarkers” can aid not only with diagnosis, but also with predicting disease aggressiveness. A mesothelioma biomarker test looks for a certain blood protein that is released by mesothelioma cells.
The protein is called SMRP, or soluble mesothelin-related peptide. The meso-marker measures the amount of SMRP in a person’s blood. Abnormally high levels may indicate the presence of mesothelioma. (The sarcomatoid type of mesothelioma tumors does not release this protein.) The U.S. Food and Drug Administration recommends physicians use this meso-marker assay in addition to traditional biopsies.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, feel free to contact us.
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