Category: Nurse’s Corner
The AstraZeneca Hope Lodge Center is Not Your Average Free Resource
I recently visited the Hope Lodge in Boston. I had been there once before to visit a mesothelioma patient. I have raved about this place since the day I stepped into it, so now I would like to give you some information about the free facility.
The formal name is the AstraZenaca Hope Lodge Center, and it is offered through the American Cancer Society. (Photo Credit: ACS). There are a few restrictions before you can become a resident – you have to be forty miles from home, and you have to be actively seeking cancer treatment on an outpatient basis. There may be other requirements. You are allowed to have a caregiver stay with you.
Boston’s Hope Lodge has 40 private suites available to the patients and their caregivers. The accommodations include a bedroom, private bath with shower, and a sitting room. This particular lodge, which opened its doors in November 2008, has provided over 14,000 nights of free lodging to cancer patients. A typical patient spends about six weeks here which accounts for close to $7,000 in savings.
There are approximately 31 Hope Lodges throughout the United States. To date, they have had guests from 48 states and 1,500 countries. This was the second time I had been there and what a great feeling it left inside me! I know about and have seen a lot of free resources, but this is by far one of the best services extended to cancer patients. There is also transportation provided to local appointments, whether it be chemotherapy or radiation treatments or a doctor’s appointment.
The feeling of community and support at the Hope Lodge is unbelievable. If you are traveling for cancer care, the Hope Lodge may be a housing option for you. If you are interested or just need more information, contact the American Cancer Society at 800-227-2345.
Jennifer Gelsick’s father, Don Smitley, stayed in the Hope Lodge of New York City while undergoing mesothelioma treatments at Mount Sinai Medical Center. Read about her family’s experience on “Faces of Mesothelioma.”
As always, if you have any questions about any aspect of your mesothelioma care, please don’t hesitate to email me at [email protected].
Nurse Inspired by Stuart Scott’s Strength in Facing Mesothelioma
The mesothelioma community is small, but we all are a part of a bigger group of people and families affected by cancer. This month, a popular ESPN anchor, Stuart Scott, died of cancer. The way he fought his disease inspired his fans and everyone around him. Although his battle was on a very public stage, every day others that have cancer are inspiring their families, caregivers, and medical community with their courage and grace. There are many messages that we can all take from Scott’s battle with cancer. Living with cancer and not giving up, and continuing to live as you want; but when you die, you beat the cancer by the way you lived is the message Scott wanted to be remembered by.
Last August, Stuart Scott was presented with the Jimmy V Perseverance Award. The presentation of the award started 21 years ago – the year Scott started working at ESPN. Jimmy Valvano, a former college basketball coach, was diagnosed with cancer at the age of 46. Before he died he started the V Foundation for Cancer Research, along with ESPN, with the dream of eradicating cancer. The V Foundation has awarded more than $130 million to more than 120 facilities nationwide and proudly awards 100% of its cash donations to cancer research. In 1993, Valvano gave a speech at the ESPY awards that has become famous – “Don’t Give Up. . . Don’t Ever Give Up!” Both Scott’s and Valvano’s speeches can be seen on the JimmyV.org web site.
Stuart Scott was a proud University of North Carolina alumnus. On Monday night, January 5, I had the pleasure of attending a men’s college basketball game at UNC. The 21,000 that packed the gym that cool Monday evening, watched a great game of basketball, but also witnessed a memorable tribute to “Stu.” College students identified with his ‘coolness’ and were deeply inspired by him. The way he lived and how he lived was on the public stage.
We don’t all appear on TV or have careers that make us famous- but all of us, and our families, are faced with the same challenges as far as how we choose to live with cancer. Fighting cancer is not done alone – your team, your coaches are working hard to continue the fight. As Stuart Scott, and Jimmy Valvano inspire all of us, look around and you will see the same courage and determination with mesothelioma patients, and other people dealing with cancer.
Know more about Mesothelioma and how you can deal with it.
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].
Free Mesothelioma Patient & Treatment Guide
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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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