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Yes, America, Mesothelioma is Real

From the time I was little, I remember seeing the commercials on television about mesothelioma. When my father was diagnosed, that was all that I knew of this disease. I think that a lot of people probably fit into this category.  But, now I know that, yes, mesothelioma is real.

Mesothelioma is a real disease. Real people are its victims, real people spend their lives tirelessly researching and treating those affected. Real people help their loved ones cope with the diagnosis and subsequent treatments, and real people fundraise and educate others about the dangers of asbestos and the desperate need for a cure.

Like most major trials in life, you never think that they can happen to you. You think that mesothelioma is some far off, distant “thing” that would not impact your life in any way. I’ll be perfectly honest, that was my way of thinking. I would see the ads on TV and feel sorry for the people who had to deal with this detriment, but not in a million years did I think that it would eventually steal my Dad, at the age of 57, from me.

When I talk about this cancer, people ask me if it’s a real thing, or if it’s a joke. Sometimes, even when I explain my story to them, they still think that it’s all some sort of money making scheme. I try my best to communicate to these individuals that it is, in fact, a reality; it is a huge part of my reality, and the reality of so many others in this community who have been rocked by mesothelioma.

Thankfully, the doctors, nurses, caregivers, researchers, and all who advocate for mesothelioma patients and their families are also real. They will never give up their fight to educate others and to eventually eradicate this disease; then, the next generation will see mesothelioma as an ancient, nonexistent disease, not something that will ever be real to them.

Moving Past the Fixed State of Being a Mesothelioma Patient

Recently, when reading a blog entitled, “What was the hardest thing you went through in life and how did you get past it,” by Paul Millerd, I came across a quote that struck me. While describing his health challenges, he said, “Identifying as a sick person implied I was stuck in a fixed state.” When someone is diagnosed with an illness it becomes part of their identity. What part of that identity is as individual as we are. Before a life-changing or altering diagnosis, such as mesothelioma, what were your dreams, plans and aspirations? Does being diagnosed and living with a chronic disease define who you are? Life is changed, but is the disease now who you are, how you identify yourself?

This week I talked with a man who had been diagnosed and treated for mesothelioma three year ago. He looked well and said the past three years had been mostly good, but he had a few challenges that he and his wife had dealt with together. They were concerned that he had progression of disease. While we talked about what they had done the past few years, he was pleased to report they had traveled, he continues to take daily walks, and most importantly they were watching their grandchildren grow. They enjoyed each day, and each other.

His wife was concerned that mesothelioma had progressed, but neither of them identified him as “sick.” In their view he was sick, better and now possibly sick again.

We all want to be remembered for ourselves. Whether that be funny, quiet, patient, kind, or whatever quality we have as individuals. I do not think anyone wants to be remembered as “the sick one.” As mesothelioma becomes a chronic disease, we want to encourage people to live in the present. We cannot control the future, and the past is gone. Enjoy each day as yourself.

Mesothelioma is a devastating diagnosis, both physically and emotionally, to the victims and their families. It takes a lot of support to “live with the disease.”  But there is support all around you to help you live with the disease. Do what you need to do. Join a support group, exercise if able, do whatever works for you. Move forward – don’t get stuck in a “fixed state.”

Watson the Best Approach for Determining Cancer Treatment Plans

Is Watson the Best Approach for Determining Treatment Plans?

Five years ago Watson debuted on Jeopardy! in a matchup with two of the winningest contestants from the show, Ken Jennings and Brad Rutter. Watson proved why he is a “supercomputer” by handily beating the two at the game. At the time, not many of the viewers envisioned that IBM’s artificial intelligence machine would someday be important to their healthcare. Now, Watson is mainstream in TV commercials asking viewers, “How can I help you?” For a mesothelioma patient, the answer might be, “Find the most effective treatment for me.”

Thanks to a partnership between New York’s Memorial Sloan Kettering Cancer Center (MSKCC) and IBM, Watson Oncology may soon be the go-to reference for oncologists, helping drive cancer care for all patients. Watson Oncology’s primary strength lies in the massive database fed with data from MSKCC on how their doctors treat their cancer patients. While this amount of data is nearly impossible for a doctor to analyze, Watson analyzes and assesses the information quickly, placing incredible knowledge at the doctors fingertips. For patients suffering from mesothelioma, a rare, aggressive cancer with few treatment options, Watson might just be the only way to guide oncologists to finding the best evidence-based treatment protocol.

“We are training Watson so oncologists anywhere will be able to make more specific and nuanced treatment decisions more quickly, based on the latest data,” said an MSKCC spokesperson in response to a comment in an article about Watson.

What is Watson Oncology?

Watson is the result of four years of hard work in IBM’s Grand Challenge: “Can a system be designed that applies advanced data management and analytics to natural language in order to uncover a single, reliable insight in a fraction of a second?” Using Jeopardy! as the ultimate test required IBM to build a machine that can interpret natural or human language that relies on the ability to relate pictures, phrases, figures, slang and nuances.

Since then, Watson has grown into a tool and resource for businesses worldwide. When MSKCC oncologist Mark Kris, MD, William and Joy Ruane Chair in Thoracic Oncology at MSKCC, realized the potential Watson could have on patient care, he led a team to build a database for Watson Oncology that could “revolutionize care and research, accelerating progress for people with cancers.”

MSKCC uses their “world-renowned cancer expertise” to drive Watson Oncology to give oncologists access to “individualized treatment options that are informed by medical evidence and our highly specialized experience.”

“I think this is beyond an evolutionary step,” says Dr. Larry Norton, Deputy Physician-in-Chief for Breast Cancer Programs, MSKCC. “I think this is a revolutionary step.”

In addition to MSKCC’s work with Watson, IBM and MD Anderson Cancer Center have also partnered. The partnership builds on MD Anderson’s oncologists’ knowledge to help drive the center’s Moon Shots program with a goal to “rapidly and dramatically reduce mortality and suffering in cancer.” In much the same as MSKCC’s Watson Oncology, MD Anderson’s Oncology Expert Advisor is expected to provide the medical team “with immediate, worldwide access to MD Anderson’s expertise and resources, and to IBM Watson’s technology prowess in quickly extracting crucial insights from large volumes of complex data.”

Expert Insight

Dr. Larry Norton, MSKCC

“This has the potential of totally changing the way we conduct medicine.”

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Watson and Mesothelioma

Having what could become a nearly infinite volume of information instantly available makes Watson incredibly valuable. Using computers to help identify how to treat a complex medical condition, like mesothelioma, can improve survival and the patient’s quality of life. Having the information built by two of the most renowned mesothelioma centers in the world, can only mean excellent care for mesothelioma patients.

MSKCC is the world’s oldest and largest private cancer center, and has a team of specialists including surgical oncologists, medical oncologists, radiation oncologists, pathologists, and nurses who deal exclusively with mesothelioma and other thoracic cancers. They are committed to providing the best possible treatments for patients with malignant pleural mesothelioma, and often conduct clinical trials and studies for mesothelioma as they continue to make strides in the treatment of the deadly disease.

The University of Texas M.D. Anderson Cancer Center works hard at achieving their vision of being the “premier cancer center in the world” through their initiatives in the research and treatment of mesothelioma. The cancer center has over 30 specialists on staff that supports their multi-disciplinary approach to treating mesothelioma patients. Their ongoing research and unique initiatives dedicated to finding a cure for mesothelioma makes them one of the few cancer centers in the world with a comprehensive program.

“Cognitive computing in healthcare allows us to use every step, every heartbeat, every checkup, every gene, every prescription,” according to IBM. “IBM Watson Health is helping transform healthcare and leading us to new insights. Helping keep us all healthier.”

To find out more about how Watson can help you in your mesothelioma care see Watson Oncology on MSKCC’s website, or visit MD Anderson’s Moon Shots Program online.

New Way to Treat KRAS Lung Cancer

Researchers Find New Way to Treat KRAS Lung Cancer

In March, MesotheliomaHelp reported that two drugs may be better than one when it comes to treating KRAS-positive lung cancer patients. Now, in a new study, researchers report they have found yet another way to tackle lung cancer when the KRAS gene is present.

In a July 28 press release from UT Southwestern, researchers report that the Kirsten rat sarcoma viral oncogene homolog (KRAS) gene, that is responsible for the most aggressive subtype of non-small cell lung cancer (NSCLC) and is found in nearly 30% of all NSCLCs, controls cell division and can drive healthy cells to divide uncontrollably, leading to cancer. The gene is tough and it nearly always fights off treatments building resistance to the drugs.

“Mutant KRAS not only promotes the growth of tumors, but also the survival of established lung cancer,” said Dr. Scaglioni, who leads the Cancer Signaling Laboratory at the Simmons Cancer Center. “Since we have no clinically-relevant effective inhibitors of mutant KRAS at this time, there has been an intense clinical interest in developing a treatment that is proven effective.”

In order to influence the effects of KRAS, the researchers realized they needed to target the ACSL3 gene. The researchers found that it is the ACSL3 gene that keeps cancer cells alive, yet when suppressed, the gene is responsible for cell death. They also found that the ACSL3 gene is “highly expressed” in lung cancer, thus making it critical to find a way to suppress it.

The scientists tested the impact of the ACSL3 gene in the lab using mice and on a human KRAS-positive NSCLC line. In both cases, the researchers proved that “ACSL3 silencing was accompanied by induction of apoptosis,” or cell death. They propose that, “ACSL3 is a target for the development of targeted therapies against mutant KRAS lung cancer.”

“There is an urgent need for discovery of additional targets that inhibit lipid metabolism in cancer cells that could lead to targeted therapies: the discovery of the importance of ACSL3 in lung cancer meets this unmet need,” said Dr. Mahesh S. Padanad, first author of the study.

Although the research was focused on lung cancer, every new breakthrough in cancer research brings hope to mesothelioma patients. Pleural mesothelioma, an asbestos-caused cancer equally as aggressive as NSCLC, is diagnosed in close to 3,000 Americans each year. Currently, there is no cure for the disease and treatments are often considered palliative.

The study was published in the July 26 issue of Cell Reports.

The Look of Burnouts for Caregivers

What Does Burnout Look Like for Mesothelioma Caregivers?

Recently, a patient and her husband returned to the hospital for a routine a checkup. Running into them in the hall, I found it difficult to remember who the patient was and who the caregiver was. The woman was recovering from a complicated course with mesothelioma – her partner had been by her side and with her non-stop throughout the past few months. He was also dealing with his own health challenges. When the conversation turned to him he was quick to admit that he was frustrated, short tempered, snapping at everyone, irritable:  just about every sign of burnout.

What does burnout look like in caregivers? What is burnout? According to the author of “The Maslach Burnout Inventory (MBI),” Christina Maslach, burnout is “emotional exhaustion, depersonalization, and a reduced sense of personal accomplishments.” There are many symptoms of burnout such as, liability of emotions, sadness and helplessness intertwined with anger, as well as failure to take care of one’s self, not exercising, not allowing time to do the things you enjoy. The caregiver is so stressed that his or her immune system is compromised leaving them more susceptible to common illnesses.

Burnout is not unique to caregivers. The U.S. Surgeon General, Dr. Vivek Murthy, has named emotional well-being a major problem among doctors and he has targeted it as one of the two areas that his office is focusing on this year. Once burnout is recognized, it is vital that you take measures to take care of yourself. Allow yourself time to reconnect with friends and family, do something you enjoy, take a break from your caregiving responsibilities.

There is help. Some of the resources that recognize the importance of preventing burnout in caregivers are HelpGuide.org, AARP, WebMD.

http://www.webmd.com/pain-management/opioid-analgesics-for-chronic-pain

Burnout is a serious issue. Don’t overlook the importance of taking care of yourself as you and your loved one deal with mesothelioma.

Free Mesothelioma Patient & Treatment Guide

Free Mesothelioma Patient & Treatment Guide

We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.

It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.

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