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Caregiver Stories Articles: Page 1 of 35

November is National Family Caregivers Month

October was Health Literacy Month and November is National Family Caregivers Month. Both of these special months highlight the importance of education, support, and understanding when dealing with or caring for a loved one. When faced with a diagnosis of malignant mesothelioma, understanding of the disease and what to look for helps both the patient and the caregiver.

The definition of health literacy from the Affordable Care Act of 2010 is “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make health decisions.”

There is nothing simple about understanding the disease of malignant mesothelioma. From diagnosis through treatment the terminology and descriptions of the disease are difficult to understand and to even pronounce. The process of being diagnosed is usually after weeks or months of tests and scans, and after other common illnesses are ruled out. Health literacy can become an issue immediately.

A “family caregiver” is considered anyone who does not get paid but helps another person do what they can no longer do without assistance. Family caregivers provide extensive assistance which can include medications, shopping, preparing meals, cleaning, advocating, coordinating, educating – the list is very long, and the contributions vital.

For a rare serious disease like malignant mesothelioma, it is important for patients and families to understand what they are dealing with. The options for treatment can be confusing and the plan can change with further testing. The importance of being able to understand and trust your team is vital. Family caregivers are the link between the patient and their medical team. Having someone with you during this journey can be life saving. In order to give the patient the best possible chance for recovery and quality time, the family caregiver’s contribution and understanding of the disease and the patient is very important and often both overlooked and under appreciated.

Looking around, the number of people who in addition to maintaining their jobs and lives also provide care for someone else is staggering. The term “invisible army” has been given to these caregivers who often are not recognized.

We honor and thank all the family caregivers for their huge contribution to ongoing care for another person, family or not!

Insights for Families of Mesothelioma Patients Coping with Loss

Malignant mesothelioma is an aggressive cancer. For some, the journey is long and for others it can strike quickly and cruelly. It is imperative to remember that the person with the disease is someone who usually has a rich life filled with family, friends, and relationships before the diagnosis. While malignant mesothelioma is a rare disease, unfortunately the distress it causes can be life altering for those left to deal with the aftermath. The person diagnosed with malignant mesothelioma can be anyone: a spouse, mother, father, grandmother, grandfather, aunt, uncle, child, or friend. These people can never be replaced. Their loss affects us all.

Recently, two brave registered nurses lost their battles to malignant pleural mesothelioma. One R.N. was a 76 year old woman who had been diagnosed with malignant mesothelioma several months after retiring. She was an accomplished R.N. turned nurse practitioner who had spent her career working with children’s development. The other R.N. was a 59-year old mother of three who had been working full time in the radiation oncology department. Both of these women combated the disease courageously and were more concerned with caring for their families’ emotional wellbeing than they were with their own health and outcome. 

Over the years we have seen survivors that are living long, full lives and we rejoice at their good fortune and pray that it continues. The goal of the mesothelioma program has always been to encourage a good quality of life with long term survival leading to a cure. We continue to learn that these journeys and losses are clinical but often personal.

The loss of these two women was particularly difficult due to the fact they were hardworking, caring, and empathetic individuals. Despite an age difference of over two decades, these women shared several similarities. Both had loving families, had been registered nurses for 35 and 50 years respectively, and had seen death in their work and personally experienced the pain of losing loved ones.  

This year 2020 has been in no way ordinary. The COVID-19 virus has enabled all of us to see things with a different perspective. We’ve redefined what’s important – our relationships and how we treat each other have become paramount.

As we mourn the loss of these two malignant pleural mesothelioma victims, we remain grateful that we had the opportunity to know them. We offer prayers to their families. They will not be forgotten.

How Clinical Trials Play a Role in Finding Cures and Treatments for Mesothelioma

Science is advanced through research, and the research process begins with clinical trials. Many us of have grown more familiar with the clinical trial process with the search for a vaccine for COVID-19. As the search continues for a cure for malignant mesothelioma, it is imperative that people involved in the mesothelioma community continue to be aware of what scientists are researching at this point for potential cures and quality life-extending treatments.

Chemotherapy has been the standard of care for patients with malignant pleural mesothelioma since it was approved by the FDA in 2004. Scientists continue to discover what the best methods to administer chemotherapy for malignant mesothelioma are. The usual route of administration is intravenously every three weeks for a 6 cycle treatment. In general, chemotherapy can be absorbed by mouth, intravenously, intramuscularly, subcutaneously, intraperitoneally directly into the abdomen, intravesicular directly into the bladder, intrapleurally into the pleural space, through implantable devices, topically, and intra-arterially. Intra-arterial chemotherapy is given directly into the artery that is supplying the blood to the tumor. It is done through angiography a special x-ray using dye to see the blood vessels.

NCT02611037 is a clinical trial that is currently being offered at the Lee Moffitt Center in Tampa, Florida. This is a unique trial that offers chemotherapy through a different approach by administering the chemotherapy intra-arterially, directly into the artery that is supplying the blood to the tumor. The chemotherapy is administered by angiography using a special x-ray dye to see the blood vessels. 

One of the main challenges of treating malignant pleural mesothelioma is the location of the disease within the human body. The purpose of this study is to deliver transarterial chemoperfusion treatment with cisplatin, methotrexate, and gemcitabine in a safe and effective manner. This procedure is performed by an interventional radiologist, who injects one third of the drug into the internal mammary artery which supplies the blood supply to the pleura. The other two thirds of the drug are then injected into the descending aorta. This area of the body also has blood vessels that supply blood to the pleura. The procedure usually takes one hour and is followed by a one hour post-recovery period before patients are discharged. 

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In this study, patients undergo angiogram and transarterial chemo administration treatment every 4 weeks (3-6 weeks interval allowed) with cisplatin, methotrexate, and gemcitabine. The medications are administered into the thoracic aorta and/or the internal mammary artery. 

Initial findings are promising. This treatment is safe and effective and may improve quality of life for patients who may not have many other options. For more information on the NCT02611037 trial, please go to www.clinicaltrials.gov or talk to your mesothelioma team.

Mesothelioma Patients Can Safely Get Treatment Through Telehealth and Video

The COVID-19 virus has disrupted all of our lives and routines. Things that we always did and places we always went are no longer available. The pandemic has forced us to all look at things we routinely do and challenged us to do them differently.

Like in business, in medicine sometimes small disruptions can lead to larger innovative changes. In the treatment of malignant mesothelioma, disruptors have led the way. Over the years we have seen doctors challenging the previously held belief that there was no treatment for malignant mesothelioma time and time again. The treatment options and longer quality of life that many mesothelioma patients are now able to be part of was not an option 20 years ago. 

Before the pandemic, having a doctor’s visit for the vast majority of people involved going to the office or clinic at an appointed time, waiting, and meeting with the doctor. Patients diagnosed with malignant mesothelioma had the option of travelling to a Mesothelioma Center of Excellence to consult with experts in the field. Since the pandemic, with social isolation and doctors offices and clinics closed to prevent the spread of the virus, there has been a surge of tele-health visits. 

The U.S. Department of Health and Human Services’ Office for the Advancement of Telehealth promotes the use of telehealth technology for health care. Their definition of tele-health is “the use of electronic information and telecommunications technologies to support and promote long-distance clinical health care, patient and professional health-related education, public health and health administration. Technologies include videoconferencing, the internet, store-and-forward imaging, streaming media, and terrestrial and wireless communications.”

In 2018, tele-health was 0.1 percent of all medical claims filed. Since the pandemic those numbers are exploding.  

Tele-health has made possible consults and reviewing of scans and meetings with mesothelioma experts. As things are starting to open back up, so are the patients coming back to the mesothelioma centers for in-person consultations. 

Like any new technology telehealth has pros and cons. Some people have commented that you have the MD’s full attention without the distractions of an office and other responsibilities. Other people have missed the personal interaction and meeting in person with their doctor.

The coronavirus has brought to the forefront a technology that can benefit a lot of people as they search for the best advanced personalized care for themselves or loved ones with mesothelioma. Tele-health can help malignant mesothelioma patients connect with a mesothelioma center without having to travel. It will take awhile to assess how tele-health will be accessed and have the best results for patients. For patients, their satisfaction with tele-health will need to be studied and evaluated to continue to efficiently access tele-health with the best results.

If you or a family member is diagnosed with malignant mesothelioma reach out, either electronically or in person for the best possible care. Our experts can help connect you with both the medical and legal resources you need to move forward.

Mayo Clinic: Source Wikipedia

Mesothelioma Centers of Excellence are Open for Patients

We frequently suggest to patients and patient’s families to seek out a Mesothelioma Center of Excellence if diagnosed with this rare disease. For many, this includes traveling to get care at one of these centers. When the pandemic was first at its peak, a lot of travel was suspended and many just did not feel comfortable traveling away from home. For some who live locally to their Mesothelioma Center of Excellence they were able to have treatment but that was not the case for everyone.  

Each state has lifted some restrictions that were incorporated during the crisis of the pandemic, and the Mesothelioma Centers of Excellence are open. Many physicians have adapted to telehealth visits to accommodate patients during the pandemic. Thankfully, we are a world of technology and many test results, scans, and lab values can be expedited from your hometown medical center to an expert of mesothelioma, allowing a lot of preliminary work to be done prior to your arrival. 

If you are traveling to a Mesothelioma Center of Excellence, we have some suggestions:

  • Inquire about their protocols for arrival of appointments. Do you need to call and announce your arrival prior to coming into the office?
  • Can a family member or friend accompany for the visit? If not, can you call in and be placed on speaker phone while the consult is active with physician and patient?
  • Are you required to bring hard copies of scans, reports, etc.?
  • Will your visit require an overnight stay at local hospital? If so, can they help with accommodations?
  • Asking what you should expect during this visit. The Mesothelioma Center consists of many medical professionals. Will you meet them in person?

These are a few suggestions to make your visit more streamlined. We urge you to get to a Mesothelioma Center of Excellence as soon as possible, as this is a very aggressive disease. The medical professionals realize this is a difficult situation coupled with the world’s current situation. We want you to know the centers are here for you. 

There have also been many volunteer opportunities that continue to be available to help you facilitate your treatment for your mesothelioma. For example, Angel Flights has been successful in transporting patients for treatments and returning them home. Please reach out to us or a Mesothelioma Center so we can assist you with making the connections that can help you with your disease.

Download Your Free Mesothelioma Handbook & Treatment Guide

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& 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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