Author: Lisa Hyde-Barrett

Nurses Inspired by Mesothelioma Families’ Strength, Love

• Lisa Hyde-Barrett
• Nurse's Corner

Every year at the beginning of June, the International Mesothelioma  Program at Brigham and Women’s Hospital holds a memorial service to honor the patients and families who have lost loved ones to mesothelioma. Every year, I leave more in awe of the all-encompassing feelings of love that transcends through the families for their lost loved ones.

The loved ones of the mesothelioma victims share their journey with the illness, and the loss of their loved one, in a way that we all relate to: a personal, intimate way. The staff that knows the patient and family during the snapshot in time they were being diagnosed and treated for mesothelioma, sees a different side of the patients. The man who loved to celebrate anything with a cake and candles, the woman who talked to strangers and befriended them, the romantic side of a man who appeared rough.

How do the families do it? Return and share their painful stories and relive a time and place that holds such painful memories? We look in awe at the survivors and secretly think – no way could I handle what they have handled with such grace and dignity.

You would think that this would be a very sad day. Although there is sadness, there is also hope. Hope that mesothelioma patients in the future can have a long life with the disease; that advances in science will lead to a cure. A realization that hope cannot be the plan, it comes with advances in diagnosis and treatment and research. Progress is being made, although it seems slow, it is in the right direction.

There is also recommitment to work harder, study harder, think outside the conventional way that we have been thinking about mesothelioma. There are now faces and families for the researchers to make that human connection, like the 70 year old man with epithelioid mesothelioma.

We empathize with the families for sharing their stories, we are touched by their generosity of spirit, we pray for them, and we thank them for coming and re-energizing us.

The survivors’ lives are captured in words from a Bono song, “There is no end to grief……….and there is no end to love.”

Respect and Kindness Lessen the Discomfort of Mesothelioma Diagnosis

• Lisa Hyde-Barrett
• Nurse's Corner, Uncategorized

Certain subjects can make us uncomfortable. Hearing of someone diagnosed with cancer is one of them. What do you say?  Do you ask questions? Do you acknowledge the diagnosis? Coming up with the answers can be challenging, especially when the diagnosis is mesothelioma. Unlike some cancer patients who lose their hair during treatments, often, the mesothelioma patient looks the same as always.

Expressing concern might not seem like enough, but often it is the kindness that is remembered. Sometimes it is not the words that help a patient, it is just being present and listening to what the patient is going through that is helpful. Although you might want to reassure the patient, saying something like “everything will be ok, because my neighbor had the same cancer and is fine, ” resist the impulse to minimize what the patient is going through. Although your intentions are good, the fact is that everyone’s cancer is different, and your neighbor might have a different type of the same cancer which has a totally different treatment plan. Listen more to what the patient is going through.

I heard this week about a patient who had gone through chemotherapy and had lost her hair. Not wanting to be intrusive, but wanting to express concern, an acquaintance said, “ Whatever you are battling it looks like you are winning. Keep it up!”  This approach expressed concern, acknowledged that something was going on, but did not intrude on the patient’s space. It left it up to the patient to share more or not. It struck me as a very kind, positive way to approach anyone who has cancer.

Depending on your relationship, humor can also help.  Another patient was telling some good friends that when she saw them next she would not have hair, as she was starting chemotherapy. One friend said to her, “You are long overdue for a new hair style anyway.” The patient repeated the statement, always with a smile, many times to ease others’ discomfort with her temporary hairlessness.

There is no way that is right or wrong. In the words of Maya Angelou, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you make them feel.”

Acknowledge with respect and kindness, and you will soon forget that you were not comfortable talking about cancer.

Nurse Helps Define Recovery for Mesothelioma Patients

• Lisa Hyde-Barrett
• Nurse's Corner

When diagnosed with mesothelioma and undergoing treatment, patients often ask, “Is this the best I am ever going to feel?” Or they want to know, “Will I ever recover and feel good again?” Let’s look at what recovery looks like for mesothelioma patients.

The definition of recovery is: “a return to a normal state of health, mind or strength.” But, how long does it take to recover from mesothelioma? Recovery can be different for everyone, and it depends on the type of treatment the patients receive for their mesothelioma. Although that may sound like a non-answer, it comes down to the simple fact that everyone reacts differently to treatment. When it comes to managing mesothelioma, all patients are faced with a new reality; a new normal.

Unfortunately, there is no cut and dry answer for length of recovery. Some people say they feel better immediately, especially in regards to their breathing. When the benefits of chemotherapy and radiation kick in, people say their breathing is different. Although that is good, some patients are impacted by the side effects and may be plagued by fatigue.

Often times, patients feel better just starting to do something to battle the disease. Mentally, they feel stronger and more powerful because they are actively doing something. While surgery is a strong step in fighting the cancer, it is rarely a quick recovery. It takes time, sometimes a long time. But, the question you could ask yourself is: “Am I better at some point during my recovery than I was before I started treatment?”

I think it is a good idea to jot down any improvements you see or feel on a weekly basis, and reflect on the positive changes that you may slowly be realizing. Writing it down helps you focus on the positive. It may be baby steps, but it is progress.

Recently, I was asked about recovery by a 65 year old man who had undergone pleurectomy surgery just three weeks before, and his improvements were slow.  He had complications, and needed time to regain his strength. The days can be long when you are recovering away from home, and you don’t know what the future holds.  I am happy to report that after one more week at rehab, he went home to recuperate and was feeling much better. “Normal” is how he described how he felt.

Sometimes you just need to keep in mind that you will get better, and things will get back to normal for you. It will be a new normal, and that can take some getting used to, but each victory is a step in the right direction!

Cryoablation is One Option for Managing Recurrent Mesothelioma

• Lisa Hyde-Barrett
• Nurse's Corner, Uncategorized

What can doctors do for patients when their mesothelioma recurs? Although many believe there are no options, recent advances have changed that. One of the options available is cryoablation. Cryoablation is a treatment that is being used for mesothelioma recurrences that involve the chest wall to help relieve pain and to improve the quality of life for mesothelioma survivors.

Cryoablation consists of controlled freezing to destroy cancer tumors in a safe and quick manner. It is sometimes used as a primary treatment for cancer of the kidney, liver, lung and prostate. Cryoablation can be used  to relieve pain that the tumor might be causing by pressing on other organs.

An English physician, James Arnott, is credited with being the first to use cold to destroy tissue, as early as the 1800s. He used a combination of ice and salt to destroy unhealthy tissue. The ancient Egyptians were the first to use cold to treat swelling, showing the roots of the procedure in some form go way back.

Cryoablation is usually administered percutaneously, or through the skin, directly into the area of the diseased tissue. Through a wand-like device, a cryoprobe is inserted, and a gas is used to freeze the tissue. The tissue is then allowed to thaw. This cycle may be repeated several times during the same treatment session.  Ablation occurs when the tissue has been frozen and the blood coagulates interrupting blood flow to the tissue, causing ischemia and cell death.

An April 2013 study from UCLA , “Role of percutaneous cryoablation in management of recurrent mesothelioma following lung sparing pleurectomy and decortications,” reports that for localized malignant pleural mesothelioma recurrences, cryoablation following surgery can be performed safely as an outpatient procedure with minimal morbidity, a very high efficacy rate, and improved overall survival.

Recently, the procedure is being performed in other mesothelioma centers. Ask your mesothelioma care team if this procedure is right for you. The UCLA study was done on an outpatient basis, but other institutions have patients stay one night in the hospital. The procedure is usually done under general anesthesia.

Here is another promising adaptation of an established procedure to improve the quality of life and survivorship for mesothelioma patients!

Mesothelioma Is One Cause of Night Sweats

• Lisa Hyde-Barrett
• Nurse's Corner

Mesothelioma patients sometimes complain about night sweats. It can be one of the symptoms that brings them to the doctors. Night sweats can be a harmless, annoying, situation, or a symptom of a serious health issue.

Night sweats are defined as drenching sweats that require the patient to change bedclothes. Doctors refer to true night sweats as severe hot flashes occurring at night that are not related to an overheated environment. Night sweats have various known causes.

Some of the conditions responsible for night sweats include:

• Cancer. Night sweats can be an early symptom of some cancers especially lymphoma. When it is cancer, night sweats are not usually the only symptom, other symptoms could be fever and unexplained weight loss.
• Hypoglycemia or low blood sugar. Patients taking insulin or oral anti-diabetic medications may experience nighttime hypoglycemia accompanied by sweating.
• Idiopathic hyperhidrosis. A condition characterized by excessive sweat production with no obvious medical explanation.
• Infections. Tuberculosis is the infection most notoriously associated with night sweats. Bacterial infections, such as endocarditis, (inflammation of the heart valves), osteomyelitis, (inflammation within the bone), and abscesses located in the appendix and tonsils, and HIV infection are other potential causes for night sweats.
• Medications. Antidepressants are one type of medication that can lead to night sweats.
• Menopause and peri-menopause. A very common cause of night sweats in women. Also caused by hormonal changes that occur in adolescence and pregnancy.

If you go to a doctor with night sweats as a concern, there are numerous questions you will be asked. In addition, you will more than likely undergo blood work. Along with blood work, your doctor may order a chest x-ray and a thyroid stimulating hormone test.

Evaluating and determining the cause for night sweats can be difficult, to say the least. If the first round of tests come back negative, your doctor may consider CT scans of your chest and abdomen, and possibly a bone marrow biopsy.

If you were exposed to asbestos in the past, make sure to let your doctor know. While night sweats, as you see, can be caused by many issues, an asbestos-related disease could be an underlying cause.

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