Discounting the Dangers of Asbestos Discounts the Value of My Father’s Life

The dangers of asbestos, even one exposure, are so frightening to me that I am paralyzed at the thought of someone coming in contact with it. Even the potential that you could be exposed is enough to bring tears to my eyes and cause serious anxiety. This applies to anyone, even a stranger, but what do you do when someone you care about doesn’t take these dangers seriously?

It is so painful when someone you love, someone who has walked this horrible mesothelioma road along with you, fails to take into account the possible ramifications of what could be caused by their negligence. My heart breaks for anyone who may come into contact with them who could also be exposed, and therefore, at risk. I am angered by their utter disregard for the memory of my father who lost his life to mesothelioma; it almost feels like they’re saying he died in vain.

It hurts when you try to explain to someone why you are concerned and they brush it off, simply saying, “It’s fine, I was careful!” or, even worse, “You’re just being ridiculous.” Is it fine that I’m left without a father, my mother without a husband, and my daughter without her grandfather? Is it ridiculous that I want to spare others from what my family had to endure? I don’t think so.

Some may say that this is overreacting, but to me, it feels like underreacting (if that’s a real thing). Families are torn apart each and every day by this cancer that could have been prevented by the elimination and proper removal of asbestos. If human lives were put in front of the dollar, we would be in a different situation right now with the continued spread of mesothelioma.

Sure, my words might cause some dissension, but I’m not afraid or ashamed to stand up for a cause that I believe in, one that is so real to me… too real. So, please, don’t be afraid to fight. Fight to be heard, fight to have your concerns addressed in a real way. Fight for those who cannot fight for themselves.

Summer Camps for Mesothelioma Patients?

Being diagnosed with malignant mesothelioma can be an isolating experience. Due to the rarity of the disease it can be difficult to cope with having a deadly disease and to remain positive. Coping for many can be difficult, despite support groups, counselors, and family support. Although they all have the best intentions, sometimes just talking with someone who is also on a mesothelioma journey can be helpful.

Summer is a special time of year. Routines are broken and life can slow down a bit. Memories that last a lifetime can be made. For many people summer is the time for camps. Many adults have fond memories of attending camps when they were children. Relationships are formed there, and some last a lifetime.

Camps for kids with cancer are available to help support them through this difficult time. The goals of the camps are to help them feel accepted and as “normal” as possible. There are many different camps nationwide to help children cope with cancer. And now, adults with cancer can turn to camp to learn how to cope with the disease. The camp experience can give a person and their family a chance to form lasting relationships with others who might be on the same journey.

When you Google “adult summer camps for adults with cancer” many options come up. There are a wide variety of camps with different focuses. Camps for women only who are at any point in their cancer journey, whether recently diagnosed or long term survivors. There are camps that conduct retreats and include recreational programs for adults with cancer. Camps for families and caregivers of patients with cancer. Camps to improve the quality of life for children, adults and families whose lives have been touched by cancer.

Some of the benefits of camps for adults include the ability to form relationships, finding new support groups or individuals, or strengthening the relationship that the patient might already have. Another benefit cited is fighting loneliness.

Families and patients with malignant mesothelioma might find that going to summer camp is just what the doctor ordered! Consider trying one out to see if you find a fun way to cope and to make memories that are truly priceless!

Tracking the Spread of Mesothelioma With a Computer Program

Ubiquitous computing can no longer be ignored in the medical field. With nearly every patient and doctor connected and constantly available, mobile apps and personal medical devices are beginning to play a role in cancer care. Doctors can monitor a mesothelioma patient’s vital signs, side effects and symptoms through a cell phone. Now, researchers report they are taking the “power of computing” one step further by tracking cancer metastasis, or the spread of cancer, through a computer program.

In an effort to understand what drives metastasis, hoping to then uncover new therapies to stop cancer from spreading, researchers from Princeton University report they have devised an algorithm that can track migration patterns of metastatic cancer cells, according to a June 29 press release. The algorithm, named “metastatic and clonal history integrative analysis,” or MACHINA, integrates DNA sequence data with information that points to where cells are located in the body. The algorithm can help them simplify data to better determine how metastatic tumors are seeded through the cancer cell migrations.

Finding a way to halt the spread of deadly cancer cells is critical for improving survival in mesothelioma patients. Mesothelioma, caused by past exposure to asbestos, is an aggressive cancer that resists most anti-cancer drugs, allowing the cancer cells to continue to divide and spread throughout the body. According to the American Cancer Society, “With upwards of 90% of all cancer suffering and death associated with metastasis, it is the single most significant challenge to management of the disease.”

Ben Raphael, a professor of computer science at Princeton and the senior author of the new research, and his team, believe their model offers a “clearer picture of cancer migration histories” than other studies because of their combination approach to tracking the cells. They also include computations that look at tumor cells that travel in “clusters” to other parts of the body. Other studies, he says, rely solely on the DNA sequencing, and reported complex patterns. However, Raphael says the complex migration patterns did not “reflect current knowledge of cancer biology.”

“The data sets we get these days are very complex, but complex data sets don’t always require complex explanations,” said Raphael. “Our algorithm enables researchers to infer the past process of metastasis from DNA sequence data obtained at the present time.”

Raphael and the team report MACHINA found that metastatic disease “could result from fewer cellular migrations than previously thought.” This means that MACHINA can help reveal key mutations that cause cancer cells to break free and spread.

The team concluded, “MACHINA’s rigorous analysis of migration histories will aid in studies of the drivers of metastasis.”

Nearly 3,000 Americans are diagnosed with mesothelioma each year. Finding an effective way to stop the cancer from spreading in the first place, as opposed to treating the cancer after it has spread, brings hope to the mesothelioma community. Patients and their families are being educated about this through various summer camps for mesothelioma patients.

Read the full study in the May issue of Nature Genetics.

https://www.nature.com/articles/s41588-018-0106-z

NIH “All of Us” Program May Guide Research for New Treatments For Mesothelioma

The National Institutes of Health has announced its “All of Us” research program is now open for enrollment. The program is looking for one million people to share their health information over decades to be used to speed up health research breakthroughs and to advance precision medicine.

Part of the Precision Medicine Initiative introduced by President Obama in January 2015, the “All of Us” program was created to support research to develop more effective ways to prolong health and treat disease. With the data bringing so many different “genes, microbiomes, environments, and lifestyles,” the information will make possible “more effective, targeted treatments for diseases like cancer and diabetes.”

“Imagine the power of a project that asks 1 million people from across the United States to volunteer to help find answers about virtually all health conditions we face,” said Alex M. Azar II, the secretary of Health and Human Services, and Francis S. Collins, the director of the National Institutes of Health, in an opinion piece they wrote in USA Today on May 7.

https://www.usatoday.com/story/opinion/2018/05/07/all-us-research-medical-issues-national-institutes-health-column/584949002/

Data Opens Door to Precision Medicine

The ultimate goal of the project is to create a database containing genetic information, biological samples, and dietary and lifestyle information of one million Americans who volunteer to share this information and, potentially, their electronic health records. This information will be used to “lay scientific foundation for precision medicine for many diseases,” according to the NIH.

https://syndication.nih.gov/multimedia/pmi/infographics/pmi-infographic.pdf

Precision, or personalized, medicine targets health care to the unique makeup of people and their diseases optimizing the potential for success of the treatment. This approach is especially beneficial for mesothelioma and other rare disease research.

Hoping for enrollees from “communities that have inadequately benefited from previous findings and breakthroughs,” Collins and Azar see the data as a way to “help science answer important questions about today’s growing epidemics and mysteries.” Mesothelioma continues to confound researchers and oncologists, so the unprecedented amount of data can only help improve outcomes.

“All of Us” Is Important to Mesothelioma Treatment

“By signing up for All of Us, you will join a mission to accelerate an emerging field called precision medicine,” said Azar.

Nearly 3,000 Americans are diagnosed with mesothelioma each year. There is no cure for the cancer, but treatments intended to go after the unique characteristics of the disease have shown promise. Oncologists and mesothelioma patients are hopeful that this approach to research will bring personalized care to the forefront of treatment strategies.

The NIH reports 27,000 people have already enrolled in the study.

“We have the opportunity to better understand and anticipate how the complex interactions of behavioral, biological, environmental and socioeconomic factors may affect the health of each us — as individuals,” said Azar and Collins.

“Understanding these interactions may be key to developing treatments that deliver more value and better health for every American.”

For more information and to enroll, visit JoinAllofUs.org.

Patient Engagement As Best Mesothelioma Care | Mesothelioma Help

Building a Relationship With Your Doctor Can Make a Difference in Your Mesothelioma Care

Relationships are what make life worth living. Throughout life we have many relationships – parents, siblings, friends, teachers, significant others, neighbors, co-workers. People come and go into our lives, depending on what we are doing, where we are living and working. Some relationships are long and fruitful, and others can be short and forgettable.

Not too many decades ago our relationship with our doctor was usually with one doctor, our family practitioner. Then it progressed to specialization, an OB/GYN, pediatrician, a primary care doctor, surgeon, and any other specialists that you might require. Now in the age of specialization and travel, you might have seen your primary care doctor only once, and he or she doesn’t really know you.

An article was just published about how having a relationship with your doctor can actually save your life. Continuity of care is something that is known to improve patient satisfaction and patient outcomes. It makes sense that if you trust your doctor, and he or she has known you over the years, they will be in a better position to know about your illnesses, and more importantly, know what is important to you.

The research was based in the United Kingdom and it involved examining 22 studies from nine countries. The countries involved in the studies were from two studies from Taiwan, and one from South Korea, Canada, U.S., United Kingdom, Croatia, Israel and the Netherlands. The countries had different cultures and different health care systems The studies showed that patients who went back to the same physician had a lower chance of dying, compared to patients who visited different doctors. This was shown in 82% of the studies.

Some of the rationales for this is that when you see the same physician you would talk more freely and give the doctor more information. Continuity of care is an important factor in patients who are satisfied with their care.

Relationships are important in all aspects of life including your medical care, whether it be for a serious illness such as malignant mesothelioma, or a regular check up. Make sure you are comfortable with your relationships – they could affect your health!

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