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Mesothelioma Patients Can See Improved Survival By Reporting Side Effects

Mesothelioma Patients Can See Improved Survival By Reporting Side Effects

Chemotherapy and other treatments for mesothelioma can lead to debilitating side effects such as pain, nausea and fatigue. But patients often suffer in silence with their symptoms which, when left untreated, can lead to severe complications, and even death. Now, researchers say it does not need to be that way, and, in fact, by opening up to their physicians, patients can improve their quality of life and their survival.

Researchers from Memorial Sloan Kettering Cancer Center followed 766  advanced cancer patients undergoing care at the Center, according to a June 4 report from ABC News (https://abcnews.go.com/Politics/wireStory/emergency-bill-fund-veterans-affairs-department-32742493). Hoping to catch issues before they became severe, researchers gave some of the patients access to an online tool to report to their medical team weekly, or more often if they experienced unusual or severe symptoms. The patients self-reported information on 12 common symptoms including appetite loss, diarrhea, shortness of breath, fatigue and pain.

After just six months, the patients in the online reporting group had an improved health-related quality of life and fewer trips to the emergency room. In addition, overall, they stuck with the chemotherapy treatment two months longer, eight months as opposed to six months in the non-online group.

Surprising even the researchers, median survival of the patients in the online group was nearly six months longer at 31 months versus 26 months for the control group. Researchers believe the survival was tied to early responsiveness to patients’ symptoms that prevented “adverse downstream consequences” and increased tolerance to chemotherapy allowing them to continue on the treatment beyond usual care.

“I was floored by the results,” said the study lead, Dr. Ethan Basch, a researcher at the University of North Carolina-Chapel Hill and Memorial Sloan Kettering Cancer Center in New York. “We are proactively catching things early.”

When a patient reported a concerning health issue, a nurse responded immediately almost 80 percent of the time. They would get the patient prescription medications, or appropriate care, to handle their specific issues. The tool gave the patients an easy way to report issues without struggling to get through to their doctor or wait for their next appointment.

The researchers concluded, “Electronic patient-reported symptom monitoring may be considered for implementation as a part of high-quality cancer care.” They now plan to launch a larger study to test the online reporting system nationwide.

Mesothelioma is diagnosed in approximately 3,000 Americans each year. Although treatments increase survival, countless mesothelioma patients have said the treatment is worse than the disease. That is not necessarily the case, and patients should not hesitate to reach out to their medical team to help alleviate some of their side effects.

Results of the study were presented at the 2017 ASCO Annual Meeting in Chicago. Find the full study in the June 4 issue of Journal of the American Medical Association (http://jamanetwork.com/journals/jama/fullarticle/2630810).

FDA Lung Cancer Drug

Mesothelioma Patients May Have Another Treatment Option With FDA Expanded-Use Approval of Lung Cancer Drug

In September, MesotheliomaHelp reported that Italian researchers found the response to ceritinib (Zykadia), an anti-cancer drug, was nearly immediate in non-small cell lung cancer patients who were previously treated with chemotherapy and crizotinib (Xalkori). Now, the U.S. Food and Drug Administration has granted approval for expanded use of the drug to include the first-line treatment of NSCLC patients with ALK-positive tumors, opening the door for another treatment option for mesothelioma patients.

Ceritinib, marketed as Zykadia by Novartis, is intended for the treatment of metastatic NSCLC in patients who express the abnormal anaplastic lymphoma kinase (ALK) gene. Approximately 3%-5% of people with NSCLC may test positive for the ALK fusion gene. There is a potential that the marker is also present in certain pleural mesothelioma cases making it a new treatment option for the cancer.

In a May 26 press release from Novartis, the company reports that of the 376 patients in the study, those receiving Zykadia as first-line treatment realized a 16.6 month progression-free survival versus 8.1 months in patients treated with pemetrexed-platinum chemotherapy first-line regimen.

“Today’s approval represents the next step in the development of Zykadia as a treatment option for ALK-positive metastatic NSCLC, bringing this important medication to a patient population where a need still exists,” said Bruno Strigini, CEO, Novartis Oncology.

Pleural mesothelioma patients and oncologists keep a close eye on research and breakthroughs that impact NSCLC patients. Although the two cancers have some differences, including the structure of the tumors, patients often follow a similar treatment protocol.

“At Novartis, we are tireless in our pursuit of developing novel medicines to treat lung cancer, and the first-line approval of Zykadia for ALK-positive metastatic NSCLC illustrates our commitment to cancer patients,” said Strigini.

Close to 3,000 patients are diagnosed with mesothelioma each year in the U.S. Although survival has improved in recent years, there is still no cure for the asbestos-caused cancer.

To find out if you may be a candidate for Zykadia, talk to your medical professional. Visit the Novartis website for more information.

Resilience Can Help Patients and Families Come Back Stronger

Resilience Can Help Patients & Families Come Back Stronger

In life, things can happen that shake us up and change the way we look at the world. Trauma, accidents, crimes against us or an unexpected diagnosis of mesothelioma for you or a family member, for example, can change your world in minutes. It is said that how we respond to these events is what makes us stronger. Through these events we often hear the word resilience talked about. What exactly does that mean?

According to Psychology Today, resilience “is that ineffable quality that allows some people to be knocked down by life and come back stronger than ever. Rather than letting failure overcome them and drain their resolve, they find a way to rise from the ashes.”

In the book, “Option B Facing Adversity, Building Resilience, and Finding Joy,” by Sheryl Sandberg and Adam Grant, resilience, grief, and moving forward, are explored.  Ms. Sandberg’s sudden loss of her husband and her coping with her young children’s grief, as well as her own, is documented. In collaboration with Adam Grant, a psychologist and professor at Wharton, who has studied how people find motivation and meaning, Sheryl tells her story. Adam fills in the research on dealing with these issues.

This is an excellent book, easy to read, and is bound to help you at some point in your life. One of the interesting takeaways from the book is that, “more than half of the people who experience a traumatic event report at least one positive change, compared to less than 15% who develop PTSD.” The authors say, “If you don’t see if growth is possible, you’re not going to find it.”

With malignant mesothelioma, unfortunately, loss happens. Everyone’s life and circumstances are different, “Option B” is just one person’s story. We all have our own stories, but it is reassuring to know that others who have endured loss are eventually able to experience joy again. We are not alone as we journey through our lives adventures and challenges.

Memorial Day to Remember US Veterans

Memorial Day to Remember US Veterans

Today, in the U.S. we celebrate Memorial Day. Memorial Day is a holiday that was first observed in 1868, to mark the sacrifices of the Civil War, when participants decorated the graves of more than 20,000 Union and Confederate soldiers. General John A. Logan is credited with issuing the proclamation.

In the Civil War, 620,000 soldiers were killed. For many years, what is now Memorial Day was known as “Decoration Day.” It was used to commemorate those killed in the Civil War and was observed on May 30. After World War I, however, the tradition was expanded to honor those killed in all wars.

In 1971, the last Monday in May was declared to be Memorial Day and a national holiday. For many years, led by the late Senator Daniel Inouye, of Hawaii, who was a decorated World War II veteran, legislation was reintroduced to change it back to May 30, to reemphasize that  the meaning of the holiday is to honor the nation’s war dead, not the first long weekend of the summer.

Approximately thirty percent of all U.S. mesothelioma victims are military veterans. For many, their exposure can be traced back to asbestos exposure from service to our country decades earlier. On Memorial Day, we honor their sacrifice. Not all soldiers are killed on the battlefield, or in combat – some suffer their fate decades later in the form of a rare, fatal cancer.

When you Google Memorial Day, some of the first items to come up in the results include the best Memorial Day sales of 2017 on refrigerators and washers, and the 10 most popular Memorial Day travel destinations for 2017. In order for all of us to enjoy these luxuries, recognize that those before us sacrificed to make it possible.

On this Memorial Day, remember it is a holiday to reflect on those who have made the ultimate sacrifice for the greater good. Remember and honor and find time to ensure that the true meaning of Memorial Day is acknowledged.

Mesothelioma Information in Proper Context

Mesothelioma Information in Proper Context

When patients and families are diagnosed with mesothelioma it introduces them to a whole new world with a different language, different people in different roles, and sometimes this all plays out in a different city, away from home. Basically, the mesothelioma patient‘s world is turned upside down. It can feel like you have lost control of your life in a foreign land.

Over the years I have taken care of mesothelioma patients in many different places, during diagnosis, in the hospital, out of the hospital, follow up after treatment, and there are quite a few observations that I have made. Information transfer and assumptions often happen when what is said is taken out of context. This can easily happen because this is a stressful time, and the information is complex.

Mesothelioma information can be confusing. Whether you are listening to your medical team explaining procedures, or you are trying to understand what you have read about the disease, it is vital that you weigh the information in the context that it was presented.

The other important fact to consider is that everyone’s mesothelioma is different. Support of other mesothelioma patients and families is important, but remember everyone is on their own unique journey with this disease. What they say or do may not be something you will need to do.

Recently, when talking with a family member of a mesothelioma patient she repeated what she had read about survival statistics for her loved one’s mesothelioma. She had the number in her head and was focused on it. Not only was the statistic  taken out of context, but it was referring to a different cell type of mesothelioma. I was able to clarify the information and explain how this information was not pertinent to the patient. Reassured that it was not accurate in her loved one’s case, they were relieved and could now turn their focus away from a number and to making the most of every day.

Information is complex in a rare cancer. Take it in context, and reach out if you need clarification.

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

Free Mesothelioma Patient & Treatment Guide

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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