Author: Lisa Hyde-Barrett
Funding is Crucial for Mesothelioma Research Projects
The way to unlock the mysteries of diagnosing and treating mesothelioma is through research. Research starts with an idea to be explored. While dedicated scientists have made inroads in the treatment of mesothelioma, with multi-centered clinical trials, funding continues to be an issue. In today’s competitive research environment it is not enough to have a promising idea- funding must be obtained.
Dr. Ritu Gill, of Brigham and Women’s Hospital, presented a poster session at the International Mesothelioma Interest Group Conference in Boston in September 2012. Her poster involved measuring the bulk of mesothelioma on CT scans, and the implications for treatment recommendations. She wanted to continue this valuable work, but she had no more funding available for the project.
At a discussion on where to go with these promising results, Mary Hesdorffer of the Mesothelioma Applied Research Foundation, approached Dr. Gill and said her foundation could help. In October 2014, at the International Mesothelioma Interest Group Conference in Cape Town South Africa, Dr. Gill again presented the findings of her research. Her and her collaborators’ findings are promising in the assessment of malignant pleural mesothelioma, volume of the disease at diagnosis, as measured by CT scans, and recommending the most promising treatments for the patient.
Without the Mesothelioma Applied Research Foundation’s support, this valuable research could not have taken place. The Meso Foundation provides seed money for mesothelioma research. The Meso Foundation has funded over $8.7 million in research projects across the globe.
As we look forward to the New Year, and reflect on the progress that has been made with diagnosing and treating mesothelioma, we urge you to check out the reports on the research that the Mesothelioma Applied Research Foundation has sponsored at www.curemeso.org. And, if you are looking for an organization to donate to in 2015, consider helping out the mesothelioma community.
Together we can work towards the cure in 2015.
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
The Conversation Project May Help Start End-of-Life Discussion for Mesothelioma Patients
Everyone knows on some level they are going to die, yet we rarely tackle the subject head-on. But one organization has started a movement that hopes to open a dialogue on death.
The project, started by a group of media, clergy, and medical professionals, is dedicated to helping people talk about their wishes for end-of-life care. There are facts that support that what we say we want at the end is not what is happening. Most Americans die in the hospital – around 70% of deaths occur there. Is that what people really want?
There is a movement to make death not just a medical experience, but a human experience. The Conversation Project, a public awareness campaign that works with the Institute for Healthcare Improvement, aims to get people talking about their end-of life-choices. There are a lot of reasons to make this a priority- the benefits of giving patients and families comfort and peace at a stressful time, saving money, reforming health care. A Conversation Project survey conducted last year, found that while 90% of Americans think it’s important to talk with relatives about end-of life decisions, only 30% have had the conversation.
As a way to get the conversation started, The Conversation Project is offering a campaign entitled, “Death over Dinner.” The week of dinner parties, held from January 1-7, is to “encourage Americans to pick a date on which to fill their tables with comfort food, family, and friends and start talking about how they want to live the last days of their lives.” Kits are available online at TheConversationProject.
Anyone diagnosed with mesothelioma is confronted with their mortality. Examining what they want can be a gift that helps their loved ones and honors their wishes- and it can all be started with a conversation over dinner.
Changing how we as a culture view death, and how we treat it, starts with the reality that it will happen, so let’s talk and eat and make our individual wishes known!
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
(Photo credit: The Conversation Project)
Mesothelioma Researchers Look at “Super Responders”
Mesothelioma is a mysterious disease with many questions surrounding it. One such question that continues to arise is, “Why isn’t there a cure yet?” It seems for many clinical trials, just when one patient responds exceptionally well and the team gets excited with the results, the majority of patients fail to respond the same way.
The question of why some patients experience dramatic results and others do not has continued to puzzle researchers and has stymied their ability to find a cure. Now, they are digging deeper into finding the reason for the dramatic differences in responses to the same treatment for the same diagnosis of cancer. Why do a few patients respond so well to one treatment, but the majority do not respond? The National Cancer Institute classifies these patients as “exceptional responders.” Other terms used for this group of patients is “super responders” or “outliers.”
Cancer researchers have long noted this group of patients that have responded well when most have received little or no benefit from the same therapy. Now, with genome sequencing, they can target the gene mutations for the patients that respond to the treatment and pinpoint other patients that will possibly benefit.
However, not all patients in the US receive genetic testing for personalized treatment to guide their care. One survey in 2012 of close to 400 medical oncologists showed that they tested for mutation in the EGFR gene in less than 40% of advanced non-squamous, non small cell lung cancer. The EGFR mutation has been found in certain populations of lung cancer and mesothelioma patients.
The NCI is leading an initiative to learn more about why some patients respond exceptionally well to cancer treatments that generally aren’t as effective for other people with the same cancer.
Progress is being made in cancer research. It continues to take time and money. To put yourself in the best position to possibly benefit from research, make sure to go to a medical center that specializes in mesothelioma and is actively researching for a cure.
If you are interested in finding out more about the super responder initiative, or if you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
Mesothelioma Nurse Encourages Patients to Seek Help for Insomnia
Mr. M. had been diagnosed with mesothelioma a month ago, and he was preparing for surgery. An issue that seemed to be effecting his quality of life was insomnia. He had difficulty falling asleep and once he did he woke up several times a night then had difficulty getting back to sleep. As a result, he was “exhausted” all the time, had little energy, and both he and his wife felt he was depressed. What can he do to improve his sleep hygiene?
Insomnia is a common health complaint. It is estimated that insomnia affects up to 50% of people after being diagnosed with cancer. Insomnia is a sleep disorder that is characterized by difficulty falling and/or staying asleep. People who suffer from insomnia usually have difficulty falling asleep, wake up often during the night, have trouble going back to sleep, wake up too early in the morning, or feel tired upon waking.
Insomnia and subsequent sleep disturbances can have undesirable effects on patients diagnosed with mesothelioma. In some cases, it can lead to fatigue and mood disturbances, but of most concern is that it can contribute to immuno-suppression. A mesothelioma patient needs to boost their immune system to help fight the disease. If you are not sleeping, it can lead to feeling fatigued during the day, and if you are fatigued, your immune system is compromised. The key to finding the appropriate treatment for insomnia is to understand what is causing it in the first place. Is pain an issue? Untreated pain can affect a night’s sleep as well as anxiety or depression.
When a mesothelioma patient has insomnia it is important to bring it to the attention of the patient’s care team. Together, they can develop a plan to treat or manage insomnia. Just like there are many causes for insomnia, there are many treatments that include combining medication with other therapies.
Mr. M was depressed and was in pain. Both can be treated once they are identified. Relaxation tapes and seeing a counselor to talk about the impact of the diagnosis on him and his loved ones were both recommended. Pain medication was added to the treatment, and he began to see the results and feel better.
With a diagnosis of mesothelioma it is very important that you don’t minimize the problems that you are facing. If the issue is affecting your health, no matter how small you think it is, tell your medical team. There are therapies that can work. There is help and it can help improve your quality of life.
If you are interested in reading and learning more about this, or if you have any question about any aspect of your mesothelioma care, please email me at [email protected].
Know more about Mesothelioma and how you can deal with it.
Giving Thanks to the Researchers and All the Breakthroughs in Mesothelioma Research
Although Thanksgiving has just passed, we can still give thanks for the research advancements made for patients with mesothelioma. Here are three promising studies in the prevention, diagnosis, and treatment phases of mesothelioma.
The time between exposure to asbestos and the development of mesothelioma, it can be decades, has long presented challenges for the diagnosis and treatment of mesothelioma. In an October 22 article by Sandy Bauers in The Philadelphia Inquirer, she describes a four year study that involves researchers from genetics to chemistry who will study people exposed to asbestos. Why do some people get mesothelioma and others do not, can it be prevented? The study will take place in Ambler, Pennsylvania, a site of closed asbestos factories. The study is funded by a federal grant of $10 million to The University of Pennsylvania’s Center of Excellence in Environmental Toxicology.
Diagnosing mesothelioma and presenting the best treatment options for each patient has been the focus of many research projects. Does the volume of disease as measured on a Cat Scan help in the clinical staging of mesothelioma? View a presentation on YouTube by Dr. Ritu Gill from last month’s IMIG conference in South Africa to find out. In the short video, she describes a multi-center clinical trial and the promising results.
Another promising clinical trial reported at October’s IMIG conference is being led by Dr. Raphael Bueno, Chief of Thoracic Surgery, Brigham and Women’s Hospital, Boston. According to an Oct. 24 press release, from Verastem, “Results from a Window of Opportunity study in surgically-eligible patients demonstrate a reduction in pFAK, cancer stem cell markers, and tumor size following 12 days of treatment with VS-6063.”
For all the researchers and all the discoveries that help ease the suffering of the mesothelioma patients and their families, we give thanks!
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
Sources:
- The Philadelphia Inquirer
http://articles.philly.com/2014-10-20/news/55201486_1_asbestos-waste-ambler-superfund - (Oct. 24 press release, from) Verastem
http://phx.corporate-ir.net/phoenix.zhtml?c=250749&p=irol-newsArticle&ID=1981229 - (YouTube by) Dr. Ritu Gill
https://www.youtube.com/watch?v=whug_4C5UVA
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.
Download Now