Mesothelioma Help Cancer News
Patient Engagement As Best Mesothelioma Care
As we enjoy Spring, we realize how fortunate we are to be living in such an exciting time for the treatment of mesothelioma. Progress is being made, not fast enough for everyone, but there is progress, nonetheless. As the plants that had been dormant for months come into bloom after a long winter, it is hard not to feel hopeful.
Progress towards a cure for mesothelioma continues, and for some, their cancer has become a chronic disease. Chronic diseases are managed by the patient 95-99% of the time. On a day-to-day basis, the individual is in charge of his or her care decisions that have a tremendous impact on their health outcomes, treatment costs, and quality of life. By the year 2020 not only will chronic conditions be the leading cause of disability throughout the world, but they will also be the most expensive to manage around the world. It is a tribute to the dedication of scientists, and researchers, and brave patients, that mesothelioma, once a cancer with no dedicated treatments options, has now progressed to a chronic condition for some.
The health care system is fragmented, and despite the efforts of many good and caring people, it is difficult to navigate the layers of medical providers and medical regulations. It is very important that the mesothelioma patient and family become engaged in the process. Patient engagement is vital as mesothelioma becomes part of your life, whether chronically or acutely. Let your team know what is important to you, what you want, and especially what you do not want, as far as treatment is concerned.
When managing mesothelioma, if you need someone to talk with, reach out. I have found that patients who live with mesothelioma as a chronic condition often have found friendship and support with other patients and their caregivers. They support each other throughout their journey and form lifelong bonds with each other. Often, patients who I have taken care of over various parts of their journey, be it at the beginning or at any other step in their journey, have important information to share. Progress continues as the research continues and the brave mesothelioma patients continue to battle through.
Enjoy the Spring, renew the spirit, look forward to the future, but remember to enjoy today!
People Around the World Mourn Passing of Mesothelioma Warrior and Advocate Lou Williams
The mesothelioma community is deeply saddened by the passing of mesothelioma warrior and the community’s leading advocate, Louise “Lou” Williams of Australia. On April 18, Lou lost her nearly 15-year battle to the disease that also stole her father from her over three decades ago.
While fighting for her life, after being diagnosed with pleural mesothelioma in 2003 and peritoneal mesothelioma in 2009, Lou began a worldwide campaign to get asbestos banned from every country. Throughout her advocacy years, Lou joined efforts with Asbestos Diseases of Victoria, Asbestos Diseases Foundation of Australia, Global Ban Asbestos Network, the Asbestos Disease Awareness Organization and an untold number of patients and families to keep others from suffering the way she and her family did.
Lou did not hesitate to use petitions as a way to bring about change. She began a petition to the State of Victoria, Australia to encourage the state to join the National Asbestos Strategic Plan, and a petition to get the immunotherapy drug Keytruda added to the Pharmaceutical Benefits Scheme to allow Australian oncologists to offer the treatment to mesothelioma patients free of charge or for a negligible amount.
Expert Insight
Linda Reinstein, ADAO
“Lou will be missed beyond measure, but never forgotten.”
In March 2015, when Lou thought she was on her death bed, she was given a new lease on life when she began taking Keytruda. Thanks to the drug, Lou told MesotheliomaHelp at the time, “Keytruda has given me back my life, as my body was literally shutting down.”
True to Lou’s mantra, “I will never, never, never give up!” she kept up her advocacy efforts even while lying in bed by sending a video of herself wishing the ADAO “all the best” as it kicked off its 13th annual International Asbestos Awareness and Prevention Conference in early April.
Linda Reinstein, ADAO Co-Founder, President and CEO, who probably knew Lou best, wrote on Facebook: “Her legacy to raise awareness, embrace unity, support efforts to find a cure, and to ban asbestos will live on in each of us.”
Mavis Nye of England, who is an eight-year mesothelioma survivor and had a special bond with Lou as the two of them joined efforts to bring Keytruda to mesothelioma patients, said, “It was an awful shock when I woke up yesterday, I just burst into tears. Lou your spirit will always be with us.”
“Heartbroken to hear of the passing of Lou Williams, an incredible woman and meso warrior who worked tirelessly to help others,” wrote Jennifer Gelsick, who lost her father to the disease in 2013. “You are an inspiration to all who work to end this disease, and my prayers are with you and your family.”
Lou leaves behind her husband, Keith, two daughters and four stepchildren, 13 grandchildren and great-grandchildren.
All of us at MesotheliomaHelp send our deepest condolences to Keith and to all of Lou’s family and friends during this very difficult time.
Read more about Lou’s life and her advocacy on MesotheliomaHelp.
Read Lou’s story on her blog at “Asbestos – Living with Mesothelioma in Australia – Louise (Lou) Williams.”
Sources:
- petition to the State of Victoria
http://www.thepetitionsite.com/376/207/908/petition-the-state-of-victoria-australia-to-join-the-national-asbestos-strategic-plan - Linda Reinstein, ADAO Co-Founder, President and CEO
http://www.asbestosdiseaseawareness.org/archives/21537
Mary Hesdorffer Moves on from Mesothelioma Applied Research Foundation
Recently, I received a letter in the mail from Mary Hesdorffer, Executive Director of the Mesothelioma Applied Research Foundation.
In it, she announced her upcoming retirement. Instantly, I felt a mix of emotions. I am so happy for her to begin this new chapter in her life but, at the same time, sad that she will be stepping down. She assured us of her continued dedication and involvement to the mesothelioma community, and we are certainly glad to hear that.
Mary was one of the first people I spoke with when we were told of my Dad’s diagnosis. She was not only a wealth of knowledge, but a listening ear as I voiced my confusion and concerns.
Over the years, she has remained in close contact, checking in at pivotal points in my father’s treatment and progression, and as a friend.
I know that there are countless others who can share my same story of Mary’s compassionate, caring nature that comes effortlessly to her.
She has been a mentor to many and helped patients and their families through the most trying times in their lives.
I hope that this amazing woman knows how much she means to my family, and I know I speak on behalf of everyone she has interacted with that she will be missed, but we wish her all the best.
You have been an inspiration, Mary, and we promise to continue the work you’ve done to ensure that we find a cure for mesothelioma, once and for all.
Mesothelioma Patients Hopeful After Anti-Cancer Drug Alectinib Was “Superior” to Crizotinib for Some Lung Cancer Patients
In Dec. 2015 the U.S. Food and Drug Administration approved Alecensa (alectinib) for the treatment of anaplastic lymphoma kinase (ALK)-positive non-small cell lung cancer in patients who have progressed on or are intolerant to Xalkori (crizotinib). Now, results from a global phase III clinical trial show alectinib, when used as a first-line treatment, “significantly reduced the risk of disease worsening or death compared to crizotinib in ALK-positive NSCLC patients.”
According to an April 10 press release from Roche, the maker of Alecensa, the ALEX study led the researchers to conclude, “Alecensa was superior as an initial treatment compared to crizotinib in this type [ALK-positive] of lung cancer.” In addition, patients did not experience any unexpected adverse side effects.
“Our goal is to transform the standard of care and we are excited to share these results with the lung cancer community”, said Sandra Horning, MD, Chief Medical Officer and Head of Global Product Development. “As part of its Breakthrough Therapy Designation, we hope to bring Alecensa as an initial treatment for people with ALK-positive NSCLC as soon as possible and will discuss these data with global health authorities.”
Pfizer, the maker of Xalkori, reports that about three to five percent of people with NSCLC may test positive for ALK. There is a possibility that the marker is also present in certain pleural mesothelioma cases making Alecensa a treatment option for the disease. Lung cancer and pleural mesothelioma patients often undergo the same treatment protocol.
Alecensa is an oral medication that blocks the activity of the ALK protein, which may prevent cancer cells from growing and spreading. In the results, the team reports the “results showed that people treated with Alecensa lived significantly longer without their disease progressing compared to crizotinib when given as initial (first-line) treatment.”
Pleural mesothelioma is a rare form of lung cancer that invades the outer lining of the lungs called the mesothelium. The only known cause of mesothelioma is through inhalation or ingestion of airborne asbestos fibers.
Alecensa, with its target of patients with a specific biomarker, continues the progress towards personalized care that could benefit the nearly 3,000 patients in the U.S. diagnosed with mesothelioma each year. Medical care targeted to a patient’s unique characteristics and genetic makeup optimizes the potential for success of the treatment and offers treatment options that may not otherwise have been considered.
If you believe Alecensa could help you in your mesothelioma care, talk to your doctor, or visit Alecensa.com.
To find out more about the ALEX clinical trial see ClinicalTrials.gov.
https://clinicaltrials.gov/ct2/results?term=%22malignant+mesothelioma%22&recr=Open&pg=1
Sources
- (April 10 press release from) Roche
http://www.roche.com/media/store/releases/med-cor-2016-09-01.htm
Some Immune Cells Thought to Help Fight Mesothelioma and Other Cancers May Actually Aid Metastasis
The National Cancer Society reports that 90 percent of all cancer deaths occur when the cancer cells migrate beyond the primary cancer site to distant organs. Stopping tumor growth and preventing metastasis is especially critical for increasing survival in mesothelioma and other cancer patients. Now, researchers believe they have found yet another way cancer cells spread throughout a patient’s body.
According to an April 6 press release from the Georgia Cancer Center at Augusta University (http://jagwire.augusta.edu/archives/43129), a team of researchers report that while cytokines are primarily useful in helping fight cancer, they found that they can also lead to cancer metastasis. These “immature” immune cells may be hijacked by cancer cells to help the cancer spread beyond its primary site.
“There is a very intricate balance in the immune system that is usually anti-tumorigenic, meaning it eliminates tumors, but in some cases, if this balance is altered, these cells may actually help tumors grow and develop into full-blown metastatic disease,” said Dr. Hasan Korkaya, molecular and cancer biologist at the Georgia Cancer Center and Medical College of Georgia at Augusta University.
Cancer spreads through the blood stream, but when cancer cells break free they have to get past the immune system where they are attacked and broken down. According to the researchers, the cancer cells use myeloid-derived suppressive cells (MDSCs) that come from the bone marrow, like a support system to dodge the immune system and metastasize.
The researchers note that MDSCs have been shown to suppress the immune system, however, their discovery that they also enable the spread of cancer is surprising. MDSCs seem to be directed by the cytokines secreted by the tumor. Cytokines, typically secreted by the immune system, can influence other cell types. The researchers found that tumors can also secrete cytokines that then signal the immature MDSCs to support the cancer growth.
“They are being schooled toward facilitating tumor cell growth and metastasis,” Korkaya said. The tumors continue to control the cytokines, according to the researchers, to keep the MDSCs from maturing, thus they can keep using them to grow the cancer.
In a recent study one researcher said, “Metastasis is currently incurable and remains one of the key targets of cancer research.” The physicians and patients in the mesothelioma community hope the researchers at Augusta University continue this line of research to help bring a solution to halting cancer’s uncontrolled growth.
Mesothelioma is diagnosed in close to 3,000 Americans each year. There is no cure for the asbestos-caused cancer.
To find out more, read the full study in the Feb. 20 issue of Nature Communications. http://www.nature.com/ncomms/2016/160524/ncomms11734/full/ncomms11734.html
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