Author: Lisa Hyde-Barrett

Caring for A Mesothelioma Caregiver

• Lisa Hyde-Barrett
• Caregiver Stories, Nurse's Corner

One of the most difficult things in life is to see someone you love suffer. Patients who are diagnosed with malignant mesothelioma, or any cancer or life threatening illness, have a range of emotional ups and downs on their journey. The family member, spouse, partner or friend, that supports them also deals with an enormous emotional burden.

According to a statistic from AARP, approximately 44 million Americans provide 37 billion hours of care for their loved ones, whether it be sick, older or disabled people. The economic value of the services that family caregivers provide is estimated at approximately $350 billion annually.

This past week, a mesothelioma caregiver was sharing her story with me. She had notebooks full of the course of her husband’s mesothelioma journey. From his diagnosis to present day she had chronicled all the events, tests, procedures and surgeries that he had been through. She was encouraging other family members to keep records as she often has to advocate for her husband. She is able to do so by referring to her notebooks to remember dates and times and the corresponding discussions. It was the wife trying to get control of an uncontrollable situation.

As the conversation progressed, we started talking about how she was handling being a caregiver. It has been difficult to watch as her husband has lost weight, been uncomfortable, depressed, and anxious. It has affected her physical and mental health. As important as her job as her husband’s caregiver is, she needed to start to pay attention to her own health.

There have been studies about caregivers’ health. Caregivers have increased physical ailments as compared to non-caregivers. Caregivers also have higher levels of stress, depression, emotional problems, and cognitive problems. Another study found that strained caregivers had a 63 percent greater chance of death within four years as compared to non-caregivers.

Caregiving has many positive aspects. It can strengthen the bond between the patient and the caregiver. Many caregivers feel it is one of the most rewarding experiences that they have in their lives.

What can you do for a caregiver? The gift of time, stay with the patient for a few hours. Encourage the caregiver to go out, take a walk, see a movie, anything that they enjoy. Give the caregiver support by listening to their journey, experiences, and fears. Caregiving is a difficult, rewarding job- made easier with support!

Mesothelioma Patients’ Treatment Plans Can Match Their “Wants”

• Lisa Hyde-Barrett
• Nurse's Corner

Towards the end of the presentation about mesothelioma at the orientation for new patients, the doctor always pauses and asks one question: “What does the patient want?” This sounds like a simple question, but as we are fortunate to see patients at the beginning of their journey, during the journey, and at the end of their journey, it is probably the most important question that is asked. Thinking about what is important to you may make your decisions easier.

This past week, as I was taking care of a patient, she shared with me that her treatment plans for her cancer are determined by what is important to her. Her husband has been very supportive and one thing that is important to her at this point is dining out with him. She is unable to cook and he has been doing that for her. But she enjoys seeing him relaxing, not having to be the one to cook and clean, and just enjoying simple conversation with him.

Another favorite thing she likes to do is admire and care for her garden. Although she cannot physically get down on the ground and weed and dig, others help out, and she now just enjoys looking at it. One of the greatest joys she experienced recently was the celebration of her church’s 100 year anniversary. This is how she wants to spend her time.

Recently, I asked the daughter of a mesothelioma patient what her mother wanted. She  replied, “She wants to live.” Yes, we all want to live, but the point of the question was to uncover what is really important to the patient. If the treatment, side effects and possible complications leave her weak and unable to watch her grandchildren, is it going to take away and prevent her from doing things that she enjoys? Ultimately, she wanted to live to see her godchild’s wedding, and she would go through any treatment if it would get her there. She had made it clear that was important to her.

We all have one thing in common – our time on this earth is limited. What do you do with your time? What do you want? Reflect on this simple question. We are all different. What is right for you may not be what your family thinks or agrees with.

When diagnosed with mesothelioma, only the patient can accurately answer: “What do you want?”

Nurse Shares Patient’s Hope in His Mesothelioma Journey

• Lisa Hyde-Barrett
• Nurse's Corner

In this age of instant communication, text, email, cell phone, it is nice to be able to talk face-to-face with mesothelioma patients and their families. It is a privilege to be included in a journey that changes their lives forever. For one couple, the sharing of their story and the approach they are taking to deal with mesothelioma is inspirational. Their journey, up to and including the diagnosis of mesothelioma, is one that is not unfamiliar.

Four to five months prior to getting the official diagnosis of malignant pleural mesothelioma, the man was treated for pneumonia and shortness of breath. Once the diagnosis was made, he was told it was inoperable. They were told to return when the symptoms became problematic because there was nothing else to offer him.

Not satisfied with waiting, they turned to the internet for more information. Knowing that there is not a cure for mesothelioma, they searched for and found hope instead. The patient and his wife traveled to a large medical center for mesothelioma that sees more patients and could offer them other options. With many more tests and doctors, surgery was once again reviewed as an option, but once again, he was deemed inoperable.

They continue to hold out hope that someone will find something to offer him. During this time they have not let the weight of the diagnosis or the course of the disease take over their lives. They plan on continuing to search for treatment options that are suitable to his body and disease.

The patient knew where his asbestos exposure happened. As a young man, he worked in a shipyard to help pay his way through college. He has always been honest and hard-working and wanted to be successful. He achieved success, yet now his hard work seems to have come back to harm him. Moving forward, they are exploring chemotherapy, clinical trials, radiation, and are leaving their options open.

The couple’s journey has been a roller coaster. When they recently met a newly diagnosed patient their hearts went out to them, as they realize the roller coaster ride has just begun for them. They also know their are plenty of people out there to support them during their journey.

Mesothelioma Patients Seeking Treatment for Depression

• Lisa Hyde-Barrett
• Nurse's Corner

Being diagnosed with mesothelioma, seeking treatment and living with the cancer, brings out a lot of different emotions. One of the conditions that can take over a mesothelioma journey is depression. Depression can appear at any point in the journey, and it can become a serious medical condition. The diagnosis and treatment, or lack of treatment, can have detrimental health consequences.

According to Cancer.net, some of the risk factors for depression include being previously diagnosed with depression or anxiety; a family history of depression and anxiety; financial burdens; and lack of support from friends and family. When dealing with a cancer diagnosis it is important to be aware of depression, and not to think it is part of the disease process.

Some of the common symptoms of depression are low energy, feelings of sadness that will not go away, frequent crying, fatigue and loss of motivation. The symptoms can be mild to severe. Severe depression can interfere with your personal relationships, your day-to-day activities and responsibilities.

In men, the symptoms of irritability and anger are more common than in women. Women tend to be more sad, and men more angry. Men are also not likely to identify the symptoms and, thus, are less likely to seek treatment for depression.

The treatment of depression can include psychotherapy, medication, exercise, and/or diet changes. It is important to recognize the symptoms of depression and seek help. Depression is treatable, and once treated can improve your quality of life. Seek help.

The place to start to ask for help can be your primary care doctor, or your mesothelioma team. Reach out – there is support available, and the sooner you are screened and diagnosed the sooner you can be on your way to feeling better. When dealing with mesothelioma it is important to have all the help and support needed that puts your physical and emotional health first. Depression is treatable- you can feel better!

Keytruda and Mesothelioma Explained

• Lisa Hyde-Barrett
• Nurse's Corner

There is a lot of talk about Keytruda and what it can offer mesothelioma patients. Keytruda is the trade name for pembrolizumab. It is included in a new classification of drugs used to fight cancer, a monoclonal antibody that is a programmed death receptor-1 (PD-1) blocking antibody. Antibodies are part of the body’s response to antigens that have entered the body. The antibody then attaches to the antigen in order to fight it off. Basically, the goal of Keytruda is to wake up the immune system and to detect and destroy cancer cells.

Pembrolizumab or Keytruda was invented by scientists Gregory Craven, Hans van Eenennaam and John Dulos. In 2016, they were recognized as Inventors of the Year by the Intellectual Property Owners Education Foundation. Merck Pharmaceuticals produces and supplies the drug.

Keytruda is currently approved for treatment of melanoma that cannot be removed by surgery or that has metastasized, non-small cell lung cancer that has metastasized or has expressed the PD-L1 protein and the disease got worse during or after treatment with platinum-based chemotherapy. In order to be approved for treatment the FDA studies the clinical trials and all the scientific evidence and will then allow approval for the drug to be used in those specific areas in which the evidence supports it. Every prescription drug marketed in the United States carries an individual FDA approved label.

See MesotheliomaHelp‘s latest article about Keytruda’s recent accelerated approval for cancerbiomarkers.

Keytruda is administered by vein as an intravenous infusion over 30 minutes every three weeks. The dose is determined by your doctor by your weight, overall health, and for your type of cancer.

In the United States, currently, there are ten clinical trials being offered to patients with mesothelioma for Keytruda. The trials are located throughout the U.S. and are the basis of decisions on whether Keytruda is effective for patients with mesothelioma, and thus, whether it will be approved for treating mesothelioma. As the clinical trials progress it is hoped that the drug will become an option for patients who have malignant mesothelioma. It is a potential new option.

Every drug has side effects and Keytruda is no different. It is estimated that 30% of patients who receive Keytruda experience side effects.

Current mesothelioma patients should check with their doctors to see if they are eligible for a clinical trial with Keytruda. Merck is conducting over 270 clinical trials on approximately 30 different cancers.

This is a conversation worth pursuing with your mesothelioma team!

If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].