Author: Lisa Hyde-Barrett
Mesothelioma Nurse is Thankful for Patients and Researchers for Continuing the Fight
Thanksgiving is a time to reflect upon what we are thankful for in our lives. Everyone has their own personal list. For some the list is very simple, others more complex. For patients and families with mesothelioma this can be a tough time. Living with mesothelioma can be difficult and scary, but as researchers and patients gain knowledge of this disease, we are learning what works.
At a conference last week that I attended regarding mesothelioma, toward the end of the conference a gentleman spoke about his fight with mesothelioma. He had surgery two years ago and looked great. He was happy as he talked about his current life, he spoke with no evidence of shortness of breath. He continues to work, enjoys spending time with his grandchildren, goes on vacations, and even plays golf. His presentation was only five minutes, but it had a huge impact on the audience.
The audience was made up of doctors, scientists, nurses, and pharmaceutical companies that are involved with mesothelioma clinical trials. For many it was moving to see someone who has benefitted from research. For them, seeing the connection between their work and the impact on someone’s life is what motivates them to keep trying. The takeaway from this conference was one of optimism and appreciation.
As a representative of the medical community, I can say we are thankful to the patients and researchers and the entire mesothelioma community for continuing their battle against mesothelioma. We are thankful for the progress that continues to be made and the dedication that is required to keep moving forward towards a cure.
Know more about Mesothelioma and how you can deal with it.
Nurse Raises Awareness of Atrial Fibrillation
Many patients in their journey with mesothelioma suffer from atrial fibrillation. Commonly known as a-fib or AF it is the most common form of heart arrhythmia. Heart arrhythmia is when “the heart beats too slowly, too fast, or in an irregular way,” according to the Centers for Disease Control and Prevention.
The heart is divided into four chambers: the two upper atria and the two lower ventricles. When a person has AF, the beating in the atria is irregular causing the blood to pool, leading to ineffective heart beats. Blood pooling can cause clots to form. The clots can then cause strokes, if they block the circulation to areas of the body.
Sometimes people do not know they are in AF, but describe feeling a fluttering sensation in their chest. Other symptoms can include heart palpitations, lightheadedness, extreme fatigue, shortness of breath, confusion, and chest pain.
Generally the risk for AF increases with age. Some other risk factors are high blood pressure, obesity, diabetes, heart failure, ischemic heart disease, hyperthyroidism, chronic kidney disease and heavy alcohol use.
The figures most often reported are that AF affects 1.5% to 2% of the general population, and this increases to 10% at age 80 and 18% at age 85. The evidence is limited in the association of a cancer diagnosis and AF. The most common time that AF occurs with cancer patients is after surgery, with the highest incidence being after lung surgery. In other studies, AF occurs in 6% to 32% of patients.
AF is treated with medication, blood-thinners, surgery, and lifestyle changes. The treatments are specific to each patient, and there are treatment guidelines and criteria that your doctor will follow to determine how to treat your AF effectively with your mesothelioma.
We have seen many mesothelioma patients with AF. Some patients do not realize they are in AF, others are symptomatic with low blood pressure and weakness. After surgery and during your journey with mesothelioma it is important that you not ignore any new and different symptoms that you may experience. Your medical team is experienced in managing AF and they can help you deal with your symptoms.
Mesothelioma Nurse Recommends Book By a Terminally Ill Doctor
“When Breath Becomes Air” is a New York Times bestseller by Dr. Paul Kalanithi, who at age 36, was diagnosed with stage IV lung cancer as he was completing his training to be a neurosurgeon. This book is not just for those among us who have been unfortunate enough to be diagnosed with mesothelioma, or any cancer – it is for all of us. It is a moving account of how Kalanithi’s life and his family’s lives were changed by his diagnosis and treatment.
As he was training and mapping out his life, never did the possibility of dying young enter into his plans. As a doctor in a highly specialized field, he saw other’s lives change every day when diagnosed with illnesses. Like a lot of people who are diagnosed with a devastating illness, he fought to take back the life he had planned.
When diagnosed with any disease, we all want to know the statistics. Many mesothelioma patients over the years have been fixated on the statistics. Many take and hold on to the numbers and can quote them for their particular type of mesothelioma, stage, lymph nodes, survival curve. Sometimes doctors even quote statistics when they are presenting the various options to their patients. As a doctor, Kalanithi knew the statistics and he knew the prognosis.
“Only 0.0012 percent of thirty-six-year-olds get lung cancer… It occurred to me that my relationship with statistics changed as soon as I became one.” What do those numbers actually mean? “The angst of facing mortality has no remedy in probability.”
The book is thought provoking and remarkable. It is well written, honest and worth reading for everybody. There are so many lessons in this book, so many inspirations. On the back cover Dr. Atul Gawande says, “Dr. Kalanithi’s memoir is proof that the dying are the ones who have the most to teach us about life.”
Intellectually, we all know we are going to die. But for a lot of us, we think it will be later. We assume we have time and options. Faced with neither, though, how will we cope? Are we paralyzed with fear and regret or do we live the best lives we can?
I strongly urge you to read this book, to appreciate the time you have, and to live your best possible life before, during and after a mesothelioma diagnosis.
You can find this book on Amazon.
Moonshot Initiative Beneficial to Mesothelioma Patients
In January 2016, President Obama announced the Moonshot Initiative to speed the development of cancer drugs and treatments to make cancer a chronic disease. He placed Vice-President Joe Biden, whose son died of brain cancer in 2015, in charge of the program.
As part of how to turn the initiative into reality, Vice-President Biden gave a speech on September 16th at Rice University in Houston. One of the highlights of his speech was to make clinical trials information more available.
Clinical trials are listed on www.clinicaltrials.gov. Changes to make the information on the web site more user friendly have been proposed and are being initiated. Another proposed change is to require investigators to publish summaries about their trials, whether they proved successful or not. This should go a long way towards helping mesothelioma patients who are often told to consider enrolling in clinical trials. However, the process can be overwhelming at a time that is already overwhelming.
The Moonshot Initiative not only calls for additional funds for cancer research, it includes initiatives for providing greater openness and collaboration among scientists. The speech was given at Rice University in Houston in collaboration with M.D. Anderson Cancer Center, one of the world’s leaders in cancer research.
The Moonshot Initiative is coming at an exciting time in cancer research. We pray that it will be as successful as the original moonshot over 50 years ago. As the Moonshot Initiative unfolds we will continue to update you.
Mesothelioma Patients are encouraged to Seek Care for PTSD
Many people who have been diagnosed with a serious illness, including mesothelioma, will experience PTSD. Post traumatic stress disorder is triggered by a traumatic event. It can be described as a kind of anxiety. The person or patient who experiences this can experience a feeling of helplessness, fear or shock. Many who have experienced a traumatic event will heal with time and through healthy coping methods.
According to the National Health Service in the United Kingdom, 40% of sufferers develop PTSD after a loved one dies suddenly. The most common symptoms of PTSD are nightmares, frightening thoughts, sweating, shaking , refusal to discuss the event, reduced interest in life and feeling numb emotionally and mentally.
A life threatening illness like mesothelioma can cause PTSD. Many medical professionals are becoming aware of this phenomenon and are setting up support groups for patients and caregivers. The symptoms usually develop within three months of the event. It can occur several months later or even years later.
If you are experiencing PTSD symptoms that last more than one month, you should seek medical attention. Patients need to seek PTSD care because their stress and anxiety could inhibit them from getting proper mesothelioma treatment or follow up care. The more intensive the treatment plan for mesothelioma, the higher the risk patients have of developing PTSD.
One of the top mesothelioma centers in the U.S. is in the process of setting up a support group and a clinic specifically for patients who need support for this type of PTSD. Often treatment includes psychotherapy. There are counselors who specialize in helping patients and their caregivers dealing with cancer.
Counselors cannot always solve the issues, but they can provide a safe place for people to discuss their issues. Depression, relationship issues, financial and emotional concern, and managing cancer symptoms and side effects, such as pain and fatigue, are some of the real concerns that can be discussed.
The key is to get treatment for your mesothelioma, but to also take care of your whole self. Living with cancer is a big challenge, and often a few conversations with a counselor can be helpful.
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.
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