Category: Nurse’s Corner
Mesothelioma Patients Must Invest in Themselves
Undergoing treatment for mesothelioma can be a challenge to sustain for the long haul. The mesothelioma team invests in the patient, with their expertise and time. This treatment plan is most successful when the patient is willing to partner with the team as well. For most treatments of illnesses, the best equation is that the team and the patient are invested in whatever it takes to make the best possible outcome for the patient. Usually the relationship between the patient and team is ongoing and long term.
Once the plan is formulated and executed, a plan that could involve radiation, chemotherapy, immunotherapy or surgery or a combination of therapies, and the patient is home managing his care, often the physical and emotional challenges set in.
With improvements in therapies for a growing majority of patients, malignant mesothelioma can become a chronic condition for some. Chronic conditions require attention and balancing.
Living with a chronic condition day to day is challenging. The CDC describes a chronic condition as conditions that last one year or more and require ongoing medical attention or limit activities of daily living or both. It is also estimated that between 95 and 99 percent of chronic care is managed by the person that has the chronic illness.
Most patients will do anything to get better so that is a great start on the investment. It requires activity, nutrition, and a good mental state. What makes a patient who has a rare disease have a good mental state is a good question. The mind is a huge component of fighting illness, and it helps us move forward and not get caught up in our thoughts.
There are many ways patients can stay positive and engaged. You can commit to making a new habit – research shows that it can take up to 66 days to form a solid habit. Many make a list of activities they would like to perform and monitor their progress. Everyone deals with ups and downs – there will be good days and not good days. Sometimes things seem easy that were difficult the day before.
Researchers have shown that being grateful can have positive effects on your brain and increase happiness. Researchers also suggest writing down a list of things that you appreciate, to remember that much more of what we are grateful for. If you have a diary of things you are grateful for, this will become a tool to reflect upon.
The key to being the best you can be while you continue your living with malignant mesothelioma is self-investment of time in your health for the long term. You are the biggest investment and if you don’t invest in yourself, who will? Basically, it is investing or contributing time to you. The investment can include physical, mental, or spiritual activities.
One investment that you know will return dividends is trying to achieve the best possible outcomes with your health. Make it a habit to live your life to the fullest with malignant mesothelioma for the long haul!
A Necessary Discussion: End-of-Life Options for Mesothelioma Patients
The COVID-19 pandemic has been a frightening time for all of us. The uncertain nature of the disease and number of people affected brings the importance of what we want at the end of our lives to the forefront. With hospitals and skilled nursing facilities limiting visitors and the inability of some to travel, it is necessary to discuss what we wish to happen at the end of life with our loved ones.
We all know that when one person within our family or group of friends gets diagnosed with a severe illness like malignant mesothelioma, it affects all of us. Uncomfortable conversations need to be had. However, navigating these complex and potentially life-altering conversations can be done in a reflective, thoughtful way.
As nurses, we have long heard our peers state that they would never have chosen the treatment that a particular patient went with, only to confront a health challenge themselves and choose the same treatment option.
Our relationships are the most important connections that we have. What we value and who we love are all individual decisions. Once we self-reflect on what we value and how we would like to live our final days, we need to let others know. To ensure your wishes are carried out, they must be shared with those who care about us: a spouse, partners, friends, and so on. Your medical team needs to know your desires, but more important than anything is that you and your loved ones know them.
Having essential conversations regarding our end-of-life wishes should be done by all of us, ideally before a health crisis. But unfortunately, it is easy to put off these conversations.
There is guidance and help on where to start thinking and planning about our wishes. Ellen Goodman, one of the co-founders of the Conversation Project, sums up their goal: “Conversations about what matters to you, not what is the matter with you.”
There are workbooks to help clarify your values and wishes. What do you value? Do you want to be home when you die? With who will you share your wishes?
In this complex world, sometimes we need to get back to basics and accept that we all are mortal. Talking and planning will not hasten our end of life but enable some peace when it does come. Ensuring that what you as an individual value and the decisions you want are honored can offer some peace of mind for both you and your loved ones.
New Year is Time for Reflection for Mesothelioma Patients
Happy New Year!
As we welcome the beginning of 2022 and the end of 2021 we reflect on how time keeps marching on. The mesothelioma community continues to be a resilient, caring group. Dealing with a life threatening rare disease along with a pandemic is challenging for patients and loved ones.
Now that COVID-19 has been with us for almost two years, all of us are reminded about the importance of resilience and patience in taking care of ourselves and each other.
The New Year is a time of new beginnings and new promises, a fresh slate. With the New Year comes some continuing challenges such as the continued COVID-19 pandemic, the toll on the mesothelioma community, and the continued need for research for malignant mesothelioma.
We have all seen and experienced the emotional toll that the pandemic has on all of us – how with time we have become weary and afraid. For mesothelioma victims and families those feelings are compounded by being diagnosed with a serious cancer. We started to care for people diagnosed with malignant mesothelioma decades ago, and as we continue to actively care for patients and their families who are diagnosed with this cancer daily, we are amazed at the ability of the human spirit to deal with adversity.
As we welcome the new beginning a New Year offers we are grateful for the advancements of the past years. The year 2021 saw improved survival time for patients with non epithelioid mesothelioma by using a combination of immunotherapy agents ipilimumab and nivolumab, as first line treatment. This treatment has offered options to some patients who did not have many, and is just an example of the steps towards a cure that continue to go forward.
Progress does not come in a straight line. It can be elusive. The New Year offers a chance for thanks and gratitude for continued scientific progress and hope in 2022.
We wish you all a happy, peaceful, and healthy New Year as we go forward together to face the challenges ahead.
Mesothelioma Community Recognizes November as National Family Caregivers Month
November is recognized as National Family Caregivers Month. First recognized in November 2013, by President Obama, the purpose of this month is to raise awareness for family caregivers and to improve their overall lives and well being.
Over the course of life, chances are that we all will be caregivers at some point for a parent, sibling, loved one, partner, neighbor, or friend. It is not something that we plan on or prepare for, it usually just happens.
Family caregivers come in all ages, sexes, shapes. They are as varied as all of us. Each one does what works for their particular circumstance. They provide care for loved ones, friends, and partners across the whole spectrum of caregiving. They take physical care, psychological care, and coordinate care for someone else. They do tasks like taking someone to the grocery store, to doctors appointments, or simply spending time with them.
If there is an “average” age of caregivers it is 47-54 – employed women. Providing care to the elderly, the average age of the caregiver is 62. And minority caregivers provide more care than their white counterparts. The length of time in the caregiving role can be less than a year to more than 40 years. Family caregivers are unpaid, and often unrecognized.
This is a very stressful job that can impact the caregivers’ health. Although there are definite positive benefits of caregiving, for the caregiver there also can be negative implications.
Since the pandemic it seems more important than ever that we take care of each other. All of us have seen what isolation can do to our collective mental health. For many family caregivers that is their reality for long stretches of time.
Shining a light on a problem or situation is important. More important is how can we help? Look around, you probably know someone who is providing care for someone else. Help them accept help. A phone call, a visit acknowledging what they are doing, staying with the person while they go for a walk, small things can mean so much.
Caregivers are giving to others, and you can help by giving to them. Accepting help is difficult for some people but it can provide relief for the caregiver who is already giving so much!
An Update on Malignant Mesothelioma from Dr. Raphael Bueno and CureMeso
The Mesothelioma Applied Research Foundation has a series hosted by their Executive Director, Mary Hesdorffer N.P., that interviews experts in malignant mesothelioma. This month the guest was Dr. Raphael Bueno, Chief Division of Cardiac and Thoracic Surgery at Mass General Brigham Hospital in Boston, Massachusetts.
Dr. Bueno reviewed the progress that has been made. In the not too distant past it was believed that anyone diagnosed with malignant mesothelioma was handed a death sentence. Today, malignant mesothelioma has many options to offer for treatment. The knowledge of malignant mesothelioma has evolved like many other cancers and therefore treatment options have as well.
Dr. Bueno reviewed that in order to understand mesothelioma, we need to understand the genomics of the disease. Genomics is the biology of the structure, function, and evolution of the tumor. Basically it’s understanding the fingerprint of the tumor. Once it is understood how it can react in certain settings, we can treat it. This does sound pretty basic but it has taken a long time to figure this out. Each malignant mesothelioma tumor is unique like one’s own fingerprint.
Another treatment that has been found to be equal or better was the pleurectomy. In previous years, many more extra pleural pneumonectomies (also known as EPP removal of the lung) were performed on patients. It has been found that removing one’s lung in someone that is 70 years or greater can create other issues. Pleurectomy has become the surgical choice. It has also found that instilling IOHC, Intra-Op Heated Chemotherapy, was key in attacking any microscopic cancer cells that could not be detected with the eye. This has also improved survival.
It has also been discovered that everyone should not have chemotherapy. Some patients do not respond to chemotherapy and their tumor continues to grow and they lose the option of becoming a surgical candidate. Chemotherapy is effective for 23-25 percent of the population for a 5 year survival.
As the talk went on, Dr.Bueno spoke about local recurrence. He educated the audience about how local recurrence is not metastatic disease, it is just what it is: local. There are options to remove this growth. Ablation or surgical removal of the tumor can be as simple as a day procedure or an overnight hospitalization. Ablation is similar to burning a wart off.
Dr. Bueno’s closing remarks were about the future and what will help cure this disease. Malignant mesothelioma does not have to be a death sentence. This is an aggressive disease but there are many who are still living beyond five years. He believes staging is critical. Dr.Bueno spoke about getting the mesothelioma patient to a Center of Excellence. He explains we do not have a cure but we certainly offer better outcomes. A Center of Excellence can offer hope to a patient that has been diagnosed.
Progress to a cure continues!
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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