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Campfire

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!

Computer Screen

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

 

 

Data Monitor

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!

asbestosis lawsuit

Is Mesothelioma Treatment Without Side Effects Possible?

Chemotherapy is vital in the treatment of mesothelioma.  However,  it often results in side effects, such as low blood cell counts, thinned or brittle hair, loss of appetite or weight, diarrhea, nausea and vomiting, that can be difficult for patients to manage and can sometimes outweigh the benefits of the treatment. Now, researchers report they have developed a technique for delivering medications that are “free of side effects.”

Researchers from the University of Virginia School of Medicine report that drugs are designed to target an offending molecule, that which makes a person sick, by completely blocking its access to a cell. By doing so, however, any good that the molecule may offer is also stifled. The team, led by J. Julius Zhu, professor of pharmacology at UVA, determined that molecules have different functions throughout a cell, and they were able to develop a targeted delivery method for drugs that can home in on a specific location of a cell while avoiding those locations that could lead to side effects, according to a July 5 press release from the University.

“The problem with side effects is caused because you just could not distinguish the molecules doing different things in the same cell,” Zhu said. “If you blocked a molecule, you blocked it regardless of what it was doing. And that usually has unwanted side effects.”

Treatment for mesothelioma, a rare, aggressive form of cancer caused by exposure to airborne asbestos fibers is complex and, depending on the stage of the disease, typically involves a multi-modal approach including surgery, radiation and chemotherapy. While these treatment options are among the keys to improve the chances of the battling the disease, they can come with pain and sometimes debilitating side effects leading to a poor quality of life. Patients often need to discontinue their mesothelioma treatments that are killing off the cancer cells because the side effects are nearly worse than the disease.

According to Zhu, the concept behind this targeted approach was “simple,” but the execution of it took many years. The new drugs, he says, will be especially useful for cancers, and “adds a new level of precision to the concept of precision medicine – medicine tailored exactly to a patient’s needs.” Precision medicine has the best chance of helping a mesothelioma patient achieve extended survival.

The technique will also speed up the development of new treatments by letting researchers more quickly understand what molecules are doing and which should be targeted, according to the press release.

Finding a way to safely deliver toxic chemotherapy and other anti-cancer drugs to mesothelioma patients is critically important to allow patients to continue to receive treatments without having other aspects of their health compromised from dangerous side effects.

Nearly 3,000 Americans are diagnosed  with mesothelioma each year.

Read the full study in the May 16 issue of the journal Neuron.

https://www.cell.com/neuron/fulltext/S0896-6273(18)30283-6

 

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