Author: Nancy Meredith

Physicians Look for Clues About Why Women with Mesothelioma Live Longer

• Nancy Meredith
• Featured News

Mesothelioma is a long, hard battle for all who are involved with the diagnosis. Recent research may provide hope for women and men.

Earlier this year, the Annals of Thoracic Surgery reported women live longer with mesothelioma than men, even when they took into account factors like age at the time of diagnosis, the stage in which patients were diagnosed, and the treatment they received.

Researchers from Mount Sinai Health System and the Department of Population Health at North Shore Long Island Jewish Hospital reviewed the records of more than 14,200 mesothelioma patients diagnosed between 1973 and 2009. Twenty-two percent were women. They looked at factors that can impact treatment outcomes:

• Age
• Year of diagnosis
• Race
• Disease stage
• Cancer-directed surgery
• Radiation therapy
• Vital stats (such as marriage status, number of children)

Overall, women with mesothelioma were found to live longer—as much as 13 percent longer. It’s logical to wonder if female hormones play a positive role in disease survival and if they hold a clue for future treatment, or if androgens contribute to mesothelioma’s rapid spread, as they do with prostate cancer.

Hormone Therapy is Linked to Longer-Term Survival of Lung Cancer Among Women

Another interesting discovery came from the Journal of Thoracic Oncology, which reported in March, that estrogen therapy significantly lengthened survival among women with non-small-cell lung cancer. Those who had progesterone added to their treatment lived even longer.

Researchers from Detroit’s Karmanos Cancer Institute reviewed records of 485 women they identified from the Metropolitan Detroit Surveillance, Epidemiology, and End Results Registry. They gathered more information through interviews and other research. The women studied were treated between late 2001 and 2005.

Women who were treated with hormone therapy for 11 or more years had much better survival rates than those without, according to a summary published by the International Association for the Study of Lung Cancer:

• Women who received estrogen lived for 80 months (6.6 years) versus 35 months (2.9 years) for those who had no hormone treatment.
• Women who had progesterone and estrogen treatment lived 87 months (7.25 years).

“What has emerged from this study and other published findings is a complex relationship between hormone use and lung cancer outcomes, with variation based on years of use,” Ann G. Schwartz, PhD, MPH, the lead author of the Thoracic Oncology article told IASLC. “There is more to learn about survival differences between men and women; hormone use may contribute to those differences.”

As with any serious disease, Dr. Schwartz also noted that, “The largest impact on lung cancer outcomes will come from successful early detection and treatment.”

Current Findings on Hormone Therapy for Men

Men with prostate cancer are often treated with androgen-suppressing drugs, which lowers the hormones that contribute to the cancer. Estrogens can suppress androgen, but they are rarely used because of their side effects on men, including increased risk for heart attack and stroke.

Can androgen suppression play a role in treating mesothelioma? The National Cancer Institute sponsored research by Dana-Farber Cancer Institute in Boston that combined androgen suppression (hormone) therapy with docetaxel chemotherapy for prostate cancer patients. These patients lived eight months longer than those who didn’t have chemotherapy. Men in a more advanced stage of the disease showed the most positive results, according to an NCI press release.

“The results of this study are practice-changing,” said lead investigator Christopher Sweeney, M.B.B.S. “Perhaps this kind of therapy will benefit other diseases that predominantly affect men.”

Sources:

• Annals of Thoracic Surgery
  http://secure.jbs.elsevierhealth.com/action/cookieAbsent
• National Cancer Institute
  http://www.cancer.org/cancer/news/features/when-a-friend-has-cancer
• International Association for the Study of Lung Cancer
  https://www.iaslc.org/articles/hormone-therapy-linked-better-survival-after-lung-cancer-diagnosis-women
• Journal of Thoracic Oncology
  http://journals.lww.com/jto/Pages/default.aspx?PAPNotFound=true

Attention Caregivers! Please Participate in Our Survey

• Nancy Meredith
• For Your Family

Mesothelioma patients have a long journey that includes doctors’ appointments, countless prescriptions, and extensive treatments such as chemotherapy and radiation, among others. Caregivers are the silent hero of the day-to-day living needs and managing the illness.

“I have come to terms that it’s my place to do any extra work involved in caring. I don’t think about it anymore, it is just natural,” says Ray Nye, a caregiver for his wife, Mavis, who was diagnosed with mesothelioma.

To more fully understand the struggles and triumphs of caregiving, author of Things I Wish I’d Known, Debbie Cornwall, is collaborating with MesotheliomaHelp.org to get answers for current caregivers on job duties, emotional status, and more. If you are a caregiver, please take the time to answer a quick study on your cancer caregiving challenges.

A caregiver is defined as one who assists another person who is ill, disabled, or often needs help with daily activities, but a caregiver is so much more than that.

Common duties for a caregiver can include:

• Providing companionship and conversation
• Providing stabilization and assistance with walking
• Preparing meals and cleaning up meal-related items
• Providing medication reminders and appointment reminders
• Personal Care services are personal in nature and often include assistance with activities of daily living

Caregivers spend an average of 20 hours per week caring for their loved ones, according to a 2009 National Alliance for Caregiving study in collaboration with AARP.

A Pew survey found that between 2010 and 2013, caregivers increased 10 percent, making it 4 in 10 U.S. adults caring for a sick or elderly family member. Caregiving is an emotional and physical job that isn’t easy, that’s why they should also have time to take care of themselves too. Caregivers are the backbone of care. They often fill prescriptions, go on walks with patients, plan and prepare meals, do light housekeeping, and other activities.

Know more about Mesothelioma and how you can deal with it.

Nurse Talks of Grief and Guilt That Come After Losing Loved One

• Nancy Meredith
• Nurse's Corner

Mesothelioma is a difficult disease to diagnose. Often, it can take months to get an accurate diagnosis and to settle on a treatment plan. When talking to family members after a death from mesothelioma, it is clear that even when they reflect on the difficulty in diagnosis it does not comfort them. Many spouses, family members and caregivers feel guilty over the path they did not take in an effort to “save” their loved one from the disease. Missed doctor’s appointments, alternative measures not taken, resources that they did not know about all add to the burden of guilt about their choices.

Mesothelioma patients and families often think, “I should have noticed something sooner,” or “I should have encouraged him/her to go a different doctor.” Some even ask, “What could I have done to prevent this death?” With mesothelioma and the direct link to asbestos exposure comes an added burden of exposure guilt.

“Why did I put my family member in harm’s way?” A son or a daughter could have been exposed to asbestos through everyday activities like laundering of clothes, a summer job as a teenager, or living near a factory that manufactured products made with asbestos. It is inevitable that people start blaming themselves for the exposure to asbestos, or not noticing sooner that something was wrong. Although they know in their heads that it is not their fault, their hearts are telling them something different.

Guilt and grieving are not processes that involve a timeline. Some people believe that if a loved one had a long sickness, and death was expected, than the grieving process should be shorter and less painful. The grieving family member can hear comments like, “You have to move on.” “You’re young, you will meet someone else.” Often the person that is saying these things does not realize how hurtful they can be. All of us grieve and accept diagnoses, disappointments, and life changes on our own time.

Mesothelioma patients and families have a long journey with this dreadful disease. From diagnosis to death to the grief of loss, the medical team encourages families to reach out for support on their unique journey with mesothelioma.

“Threads of Hope: An Offering for Those Who Grieve,” by Beth Rotondo, is a small book that was given out at a recent memorial service. This book, or other similar self-help books, could be used as a reference for any one of us as we experience loss throughout our lives.

If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.

Write It Out for Strength and Hope

• Nancy Meredith
• For Your Family

By C. Hope Clark

In my profession as a writing counselor and an author, hardly a day goes by that someone doesn’t email, Facebook or Tweet me about how illness has incapacitated them to the point they have no will to write. Likewise, caregivers, their days packed with the needs of others, tell me the same. To them, life has sucked all the joy out of storytelling because their energies are spent elsewhere, amongst the myriad of obstacles to simply living. In each and every case, I beg them to rethink their choice.

Burdened with severe rheumatoid arthritis since his twenties, my uncle lived to age 80, crippled and in pain most of his days. Yet he wrote the most beautiful letters to my mother, his sister. He allowed people to glimpse into his soul through words. He held a romantic view of life, appreciating the intricacies and simplicities of his world. I never felt his pain, and there is no doubt in my mind that his writing helped him forget his.

That’s only one of the many reasons we need to write through the irritation, struggle, and challenges laid before us. Writing can be cathartic and empowering, enabling us to:

• Vent
  What you’re thinking may not be what you want to tell the people around you. But it’s freeing to express your worries in words. I once read a child’s story where the fretting little boy was taught to write his anger out on paper, read it aloud, and then throw it away. It’s like writing an angry letter to the editor, sleeping on it, then rereading it in the morning. Such a release. Such a tool to help us anchor ourselves.
• Slow down and think
  When we document our days in journals, stories or poetry, even scripts, we have to slow our thought processes down and sift. Converting our moments into scenes and phrases allows us to look back and study how we handled moments, news, even treatments. Writing our story can make us step back and regroup, defining what is important and what is not.
• Preserve history
  The universe moves forward whether we record it or not, but there’s something special about expressing our interpretation of it. Even with electronic media and an overabundance of information, our memoirs are worth gold to our friends and family. Maybe not today. Maybe not tomorrow. But eventually they’ll marvel at your voice. And you’ll be able to look back and see how far you’ve come, writing through days and current events that turned out to be so much bigger than what we thought, more meaningful than just us.
• Document medical issues
  Whether you wish to express displeasure, weave a beautiful poem, or simply journal facts, writing about an illness, yours or others, allows you to record yourself in the moment. This spontaneous documentation just might enlighten others about symptoms, reactions, and treatments.
• Communicate with each other
  What we may not be able to say face-to-face might be expressed in writing. A diary, a thank-you note, or a parallel short story to what we experience might enable others to walk in our shoes. Your story might be what assists another to endure a similar period in their life. Your sentences might help others realize they aren’t alone.

Whether you blog, write letters, create a story for Chicken Soup books, YouTube or publish a book, your experience is recordable, and a tool.

Expert Insight

C. Hope Clark

“Writing can liberate you, pick you up and carry you through ordeals. It can help you preserve and appreciate your journey. And it can help others.”

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So when you think your care-needing or caregiving has sapped the strength out of you to write, take a pause. In actuality, writing may just be the medicine you need.

Know more about mesothelioma and how you can deal with it.

Nurse Talks About Dealing With Grief After Losing a Loved One

• Nancy Meredith
• Nurse's Corner

A friend’s mother died recently after a short illness. Diagnosed in December with a very aggressive form of amyotrophic lateral sclerosis- Lou Gehrig’s disease – she died in mid- March. This vibrant, young woman was struck down by a debilitating disease. The end was painful for the family as they watched the disease progress rapidly until she enrolled herself in hospice.

Her mother chose hospice and her family listened. Her husband of 48 years was devastated.  He told everyone who came to the wake the story in the exact same way. His wife’s devastating diagnosis, the swiftness of her decline, the suffering, and the heartbreaking loss that he and his family were dealing with. My friend was reflecting on that and the way her father was handling his grief, and we talked about the importance of letting him tell his story and listening to it.

Expert Insight

Dana Farber Cancer Institute

“Grief is made up of intense emotional and physical reaction that is characterized by deep sadness and a yearning to be with that person again, how we react will be different for each of us because grief is unique.”

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Grief varies from person to person, how we deal with it and on what timeline is unique. How can we as caregivers and family members help when someone dies? Most importantly, remember that everyone grieves in their own style. The five stages that Dr. Elisabeth Kubler-Ross introduced in 1969 – denial, anger, bargaining, depression, acceptance – are a guideline and everyone is different. People that are dealing with a loss must be able to do what they are comfortable with, whether it be repeatedly telling their story, attending support groups or seeking out grief counselors, and on their own timeline.

Grief is something we all deal with during life. For my friend and family it is supporting her father by allowing him to tell his story in his own way to deal with his grief. It does not go away if it is ignored.

Mesothelioma victims and their families need support through their unique journey with mesothelioma. Don’t be afraid to listen. Everybody has a story and often just listening to it more than once can be helpful.