Month: March 2018

John Dreier Essay

• Nancy Meredith
• Scholarship

By: John Dreier

“What are all the symptoms you have had due to LAM?” Over six hundred people have answered me, and their shortness of breath, their collapsed lungs, their cysts, their tumors, all of it- fit neatly into a column of a spreadsheet. I have graphed their pain and analyzed their suffering. However, no Cartesian coordinate system that can convey what it is like to listen to the belabored pauses between the answers as these women struggle to supply their bodies with sufficient oxygen. Yet the patients I talk to never sound dispirited. Their ragged breaths never hint at a despair one might assume would be omnipresent. To face cancer is to acknowledge the death within life- your body’s own tissue transforming into a terrible sickness. Lymphangioleiomyomatosis, or LAM, the lung disease my lab studies, occurs primarily through genetic events. You cannot prevent your genes any more than you can prevent the weather.

Mesothelioma, however, is a much more terrible, destructive lung disease (though it can affect other organs) and does not typically arise from genetic events. Asbestos, a seemingly innocuous fibrous silicate, which is the primary cause and risk factor for mesothelioma. While prevention and awareness are essential to keep people from becoming afflicted by mesothelioma, the reality is that each year 3,000 Americans are diagnosed with this frighteningly aggressive cancer. Each year 3,000 mothers, fathers, daughters and sons are forced to acknowledge the death within their lives. If we are to address mesothelioma head-on, we must not only focus on prevention and awareness, but also on treatment and, ultimately, a cure. We must endeavor to do more than merely attempt to ameliorate this disease. We must eradicate mesothelioma from the lungs of loved ones so they can take a deep, full breath of life, and acknowledge that death but visited, and his stay was just a reminder of our own mortality.

My grandmother, a spry 95 year-old, remembers when asbestos was casually mixed in with all manner of building materials. Similarly, my mother can recall playing hop-scotch on spare asbestos-laced roof shingles. While the matrons of my family are thankfully mesothelioma-free, their stories are not uncommon for many people their age. Furthermore, the buildings constructed during that time still exist – many of which may secretly harbor asbestos in their walls and ceilings. While asbestos is only harmful in an aerosolized form, asbestos materials are a lurking danger. What can we do about this danger, given its omnipresence? Counterintuitively, the safest thing is to do nothing. Keeping asbestos-laden materials in good upkeep prevents the fibers from making their way into lungs and airways. If we demolished every building with asbestos, not only would the cost be exorbitant, but it would also increase the risk of releasing the deadly fibers into the air. On the other hand, if older buildings are allowed to fall into disrepair, their deterioration too could aerosolize asbestos. Thus, many states have enacted standard policies of asbestos testing for many large building demolitions and remodeling contracts. However, anyone and everyone who has a home-improvement project in mind, or is involved in the upkeep or custodial duties of older buildings, should be aware of the dangers of asbestos. Tearing down that wall between your kitchen and your living room may give your home a modern, open-style look, but it may also release a deadly agent into the air. Spreading this knowledge is the first step in creating a mesothelioma-free world.

While prevention and awareness are a necessary step in eradicating mesothelioma, research into treatment and a cure is absolutely critical for those already afflicted with this deadly disease. Scientists are actively trying to discover new ways of combating mesothelioma. There are currently 96 open clinical trials related to mesothelioma, 57 of which are in the United States and 43 pursuing interventional strategies. Unfortunately, the road between the discovery of a drug that has cancer-inhibiting potential to FDA approval is a long one. Take everolimus, for instance, the primary drug used to treat tuberous sclerosis complex (TSC), another disorder my lab studies. In 2009 Memorial Sloan Kettering Cancer Institute began exploring the potential of everolimus to treat a certain subset of patients with malignant pleural mesothelioma (MPM). This Phase II trial (remember, a drug must pass Phase III to make it onto the market) lasted 6 years. Iin April 2015, the study concluded “Everolimus has limited clinical activity in advanced MPM patients. Additional studies of single-agent everolimus in advanced MPM are not warranted.” To put that time-frame into context, I began college in 2009 and graduated in 2013. It takes longer for a drug to be deemed ineffective than it does to get a bachelor’s degree. Consider also that less than 10 percent of patients diagnosed with mesothelioma will live past five years. With a cancer as aggressive as mesothelioma, national interest, financial support, and intense, fast-paced research are necessary for the very survival of these patients.

Having worked in a translational medicine laboratory for the last two and half years, I am more than familiar with the obstacles confronting the scientific community attempting to treat these debilitating cancers. It is not an easy process. Each step must be scrutinized carefully, because any flaw may only waste time of researchers and patients alike. Even so, I would tell a family member of someone afflicted with mesothelioma that there is hope. Personalized (sometimes referred to as targeted) medicine is the future of healthcare, and cancers will be the most susceptible to this approach. With lowered costs of genetic sequencing as well as faster and more robust algorithms combining proteomic, metabolomic, and genetic profiling – we are rapidly pushing the boundaries of not only detection of biological targets, but also therapies specifically designed for those targets. My hope as a scientist, and as a future clinician, is that increased awareness of mesothelioma will garner public attention and support for directed therapies. For now, all we can do is spread the word, and provide the resources to dedicated scientists and physicians fighting to end this deadly disease.

We cannot change the past. Asbestos is all around us – in our homes, our schools, our offices – it surrounds us. However, we can build a new future. A future in which families are aware of the dangers of older buildings and take precautions; a future in which support and funding for mesothelioma enter the national spotlight; a future in which a patient diagnosed with mesothelioma has hope for a cure, because personalized medicine has a solution specifically for them. We can build that future, but it has to start today.

References

• Alexander HR, Burke AP. Diagnosis and management of patients with malignant peritoneal mesothelioma. Journal of Gastrointestinal Oncology. 2016;7(1):79-86. doi:10.3978/j.issn.2078-6891.2015.134.
• Calabrò, Luana, Aldo Morra, Ester Fonsatti, Ornella Cutaia, Carolina Fazio, Diego Annesi, Marica Lenoci, Giovanni Amato, Riccardo Danielli, Maresa Altomonte, Diana Giannarelli, Anna Maria Di Giacomo, and Michele Maio. “Efficacy and Safety of an Intensified Schedule of Tremelimumab for Chemotherapy-resistant Malignant Mesothelioma: An Open-label, Single-arm, Phase 2 Study.” The Lancet Respiratory Medicine 3, no. 4 (2015): 301-09.
• ClinicalTrials.gov, U.S. National Institutes of Health, Web. March 20, 2016
• Mass.gov, Massachusetts Energy and Environmental Affairs, “Answers to Common Asbestos Questions,” Web. March 15, 2016

Essay Contest: Win an Apple iPad Mini

• Nancy Meredith
• Scholarship

Contestants in the MesotheliomaHelp Scholarship Essay Contest sponsored by Belluck & Fox, LLP, have an additional chance to win a iPad-mini.

Share the essay contest with friends and family on Twitter and Facebook for a chance to win an Apple iPad Mini. The more you tweet the more opportunities you have. Please remember that to be eligible to win you should submit your essay in the annual essay scholarship contest. One lucky ipad-mini winner will be selected at random!

Every year, as an incentive to get people participating in our scholarship contest, we provide a chance for students to win an iPad Mini by sharing their essays with friends, family and all readers of MesotheliomaHelp.

The History of Asbestos Use in America

• Nancy Meredith
• Scholarship

My Hero

• Nancy Meredith
• Scholarship

by Samantha Robeson

A yellow Post-It note is stuck over his mouth with a drawing of a huge smile on it; a furry stuffed hedgehog sits precariously on top of his head.  Memories of my Poppop always bring a smile to my face.  The side effects from the medication of the latest clinical trial didn’t make Poppop’s hair fall out, but it made it curly and wiry.  He called himself Brillo Head and would make his grandkids giggle by using our stuffed animals as his wigs.  Poppop always had a smile on his face; if the pain was too bad or if he was too weak to smile, he would draw one on his face so that we knew he was still happy inside.  He wasn’t just a survivor; he was so much more to all of those who had the pleasure of being in his presence.  Nobody knows how he could stay so positive for so long in the face of such pain and suffering.  When he was hurting so badly that he couldn’t hide the anguish, he would hide from his loved ones so as not to upset them.  It sounds cliché to say that my Poppop was such an inspiration, but it is hard to put into words how his charisma and optimism touched those around him.  He was my hero.

For 38 years, Carl Roca “Poppop” was a pipefitter; like millions of other tradespeople, service men and shipyard workers, he was being exposed to asbestos on a daily basis.  It wasn’t until 1986 that he got a letter from his union talking about the dangers of asbestos, and recommending that he get a screening.  It showed a little scarring on his lungs but nothing to be concerned about; the follow-up appointment with the pulmonologist confirmed that his condition was stable.  In 2001 Poppop started to have chest pains and shortness of breath.  He went back to the pulmonologist, who still didn’t suspect mesothelioma; he performed surgery to drain the fluid and he took the liberty to scrape the scar tissue.  After the surgery, he told the family that he knows what cancer looks like, he was sure Poppop didn’t have cancer and that he should be fine.  Sadly, while being discharged from the hospital, Poppop saw the word “mesothelioma” scrawled on a piece of paper.  It was up to the family to learn about this dreadful disease.

The oncologist explained that the procedure done by the pulmonologist (partial decortication) severely limited Poppop’s later treatment options such as a pleurectomy or pneumonectomy.  Also, one of Poppop’s ribs was broken during the surgery; the severe pain was from the nerve bundle that was then trapped.  Surgery to fix the rib was not recommended due to the spreading cancer.  The oncologist told Poppop that he had 6 months to live, and since chemotherapy would not cure the cancer he wouldn’t recommend any treatments.  He suggested that Poppop get his affairs in order.  If this were me, I would be ticked off at the asbestos companies and the pulmonologist who told me I didn’t have cancer.  Not Poppop—he never worried about himself, because he was too busy caring about Mommom, his four kids and us 10 grandchildren.  He wasn’t going to let this death sentence kill his spirit.

Poppop was only 60 years old; how could he have only 6 months left to live?  We spent every weekend with him in the summer, when the family would crowd into his little trailor at the beach to enjoy each other’s company.  He was just chasing me around with a live crab saying it was going to bite my nose.  Poppop was the one who took care of everything for everybody; he fixed everyone’s toilets, heaters, cars, boats and he even knew how to fix broken hearts with a smile.  Poppop would make sure everyone else’s problems were fixed before he tended to his own leaky faucet.  What would we do without our Poppop?  Everything would fall apart and no one would laugh ever again!

Have no fear, Poppop is here to put a smile back on everyone’s face.  He wasn’t going to let a little cancer destroy his family.  He would joke with all of saying “Meeezofeeeleeeheeemeeesheemeeomia– how could something with such a goofy name be so scary?”  Comic relief was our saving grace when Poppop was around.  My mom tried not to let us kids see her cry, but I remember how she didn’t go to sleep for days because she was doing research to find some ray of hope.  Finally, she found a story about a man with mesothelioma who was involved in a clinical trial and was beating the odds.  Within days, Poppop was on the phone with this survivor, and my mother had used a ream of paper printing out information about the clinical trials for people with mesothelioma.

Poppop’s 6 month death sentence turned into a 6 year stay.  He looked at each day as a gift, and he taught us to be grateful rather than resentful.  While participating in the various clinical trials, Poppop spoke to newly diagnosed patients who had no idea what they should do next.  Naturally, he found a way to make even the sickest people smile.  Mommom would tell us stories about Poppop’s antics when he was getting his treatments with the other cancer patients; his silly jokes would make not only the other patients but also the medical staff crack up.  In addition to being a great support to other cancer patients and their families, he also educated others by talking to various community, medical and labor groups.  In 2005, the Graham Cancer Center (Delaware) awarded my Poppop with the “Community Excellence Service Award” for reaching out to help others.

My Poppop also helped to raise awareness about Mesothelioma at the federal level, but that was no easy task.  He never gave up; he wrote letters until the officials agreed to meet with him, he took multiple trips to Washington D.C., and he would track down our state officials at every carnival and parade they attended.   Senator Joseph Biden (who is now our Vice President), replied to every letter, met with my father and wore the blue Mesothelioma Awareness bracelet my father and mother gave him.  When I look at the picture of my Poppop talking with Representative Michael Castle about mesothelioma, it is hard for me to believe that less than 4 months later he took his last breath.  My Poppop had to wear a tight band wrapped around him and suck on pain lozenges, but this didn’t stop him from spreading awareness. (see the attached photos)

A month after my Poppop was laid to rest, my Mommom was mailing information to the government officials with a cover letter stating, “My husband died from mesothelioma…He was in the process of writing the attached letter when his cancer became very aggressive, so he was never able to mail it.  Since he was diagnosed with mesothelioma six years ago, his main concern has been to inform the public…Before he died I promised him that the letter would be mailed.  Please take a few minutes to read it.”  Years after his passing, we continue to spread awareness in his memory; along with my mother, brother and Mommom, I went to Washington D.C. and was able to share our family story with those on Capitol Hill.  I wish my Poppop could have been at my high school graduation and could see how hard I am working in college, but instead of being sad, I feel joy that he was an important part of my life.  Hopefully one day, I’ll become a Bio-Medical Engineer who helps to develop treatment options that enable those with cancer to write their own personal survival story.

Haider F. Zahabi

• Nancy Meredith
• Scholarship

By: Haider F. Zahabi

As a child growing up in Iraq, I lived through the end of the Iran and Iraq war as well as the American and Iraq war. I can remember seeing buildings and cars blown up on a daily basis. I can remember the dust and debris from these buildings that filled the air. I remember the thick smoke from burning oil refineries that made breathing nearly impossible. As I grew I began to see more and more people getting sick. I saw many older men and women coughing and having trouble breathing even when the air seemed clear. I observed people walking around in pain and suffering. I figured they were getting old. As an adult, I discovered that these people were not just getting old but in fact were very sick. These people were among the thousands of people who are sick from mesothelioma and other cancers caused by such materials as asbestos.

During geology class I learned that asbestos is a naturally occurring substance that is processed into a fire resistant fibrous structure with great thermal insulation properties and high tensile strength that many manufacturers and home builders liked to use. Many builders used asbestos in floor tiles, insulation, shingles, cement and many other items used in home construction in Iraq.  It was the asbestos in the building materials that were making many of the Iraqis I saw sick. When the buildings and structures they lived in or around were destroyed from bombings, the deadly asbestos became airborne. The people would walk around inhaling the deadly asbestos fibers. Many of these people were unaware that something as simple as breathing would kill them later. As people aged the fibers that embedded themselves in the lungs of these innocent people began to make them sick. The worst part is it was not just older people that were getting sick; it was middle age adults like my best friend’s uncle who was only 40 years old. What I realized was many people died and are getting sick because builders and manufacturers did not and will not stop using such materials such as asbestos despite knowing the dangers. This knowledge pushed me to go to school to get an education in which I could make a difference. I knew I could not be a doctor or a scientist but I knew I could be an engineer and work to make safe options for people.

While I cannot change the past, I can continue my education, help educate the future and raise awareness of the deadly effects of asbestos and other carcinogens. I want to educate Americans and other countries that have lax building codes and manufacturing regulations. People all over the world deserve to be educated and made aware of the dangers. They need to understand how to protect themselves. Furthermore, by becoming an engineer, I can ensure that the company I work for considers the effects these chemicals and materials have on people. I want to be able to look at the people who utilize my products or inhabit the buildings I help build. I do not ever want to know that I cut corners and saved money at the risk of someone’s health. Finally I want to be able to tell people who are suffering and their families that I will work hard to ensure that future generations will not have to experience what they have. I want them to know that I will fight for them.

Overall mesothelioma is a preventable disease that my country men and others should never have to experience. This disease can be eradicated through education and the institution of laws to protect the innocent. I do not want people to be afraid of the materials in their house. Additionally I want to see restrictions implemented in America, Iraq and other countries that have failed to protect their people. Furthermore I want people to understand how devastating a disease like mesothelioma is to families. The public needs to understand that watching a family member suffer through a preventable disease is not only heartbreaking but devastating.

To all people who are suffering or is a family member of someone who is suffering I would say, keep your head up. I cannot say that I personally know what you are going through but know there are people out there who care and will fight for you and your rights. I, along with many others, will work to improve laws that can help prevent this from happening again. Finally I would say you are in my prayers and will be there for you.