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Month: April 2017

Dad Losing to Mesothelioma

Remembering Dad on His Birthday After Losing to Mesothelioma

I write this on what would have been my father’s 61st birthday. I write this with a broken heart and tear-stained cheeks. I write this as a daughter who lost her hero to the terrible clutches of mesothelioma.

Normally, Dad’s birthday would have been full of fun. Phone calls, visits, food, and a game with my great aunt (who spent her wedding anniversary waiting for him to be born) to see who would call to give their well wishes first! Now, in a stark, different reality, I find myself alone with my thoughts, imagining what today would have been like.

I imagine that today would have been spent with family as usual, but with the beautiful addition of his two-year-old granddaughter. The laughter that always accompanied time spent with my Dad would have been amplified with him enjoying her antics and singing our song, “You Are My Sunshine.”

Today should have been a day of celebrating Dad’s life with him present, not lovingly remembering him in the past. Thankfully, I have so many beautiful memories with him to always carry with me, but I will always mourn for those left unmade. Empty chairs, songs without a voice, and hearts broken, all because of mesothelioma.

Drug MS Against Mesothelioma

Drug Effective in Fight Against MS May Prove Effective Against Mesothelioma

In the quest to find a more effective treatment for mesothelioma sufferers, researchers sometimes turn to medicines that are successful in treating other diseases. In February, MesotheliomaHelp reported on the use of a pinworm drug in the fight against cancer. Now, researchers report that a drug used to treat multiple sclerosis could be effective against mesothelioma.

Researchers from the University of Hawaii Cancer Center, joined by colleagues from University of Ferrara, Italy, and New York University Langone Medical Center, looked at the immunosuppressant drug fingolimod, or FTY720, approved for multiple sclerosis treatment, due to its anti-tumor activity reported in various cancers. The drug had not previously been considered for use in mesothelioma care.

Mesothelioma is a terminal cancer caused by the inhalation or ingestion of airborne asbestos fibers. The asbestos fibers lodge deep in the tissue surrounding the lungs, in the case of pleural mesothelioma, causing inflammation that festers for years. Chronic, persistent inflammation is known to  lead to cancer, and according to a 2014 press release from UH, the inflammation “can cause mutations in cells even after 30-50 years of dormancy.”

The study, using mouse models to evaluate anti-tumor efficacy and toxicity profile of FTY720 in vivo, showed the drug could induce apoptosis (cell death) and reduce tumor growth in mesothelioma without causing toxicity.

“FTY720 is a potentially promising therapeutic agent for MM [malignant mesothelioma treatment],” concluded the researchers.

Research Costs Supported by State Grant

Mesothelioma research requires significant amounts of time and money, and without adequate funding projects may not be completed. The researchers noted that “the development of new therapeutic agents for rare cancers, such as MM [malignant mesothelioma], is hampered by the increasing costs of research and drug development from the laboratory to the patient’s bed.”

They added that using a drug repurposing approach, like this research aimed at using an MS drug to treat mesothelioma, “is a strategy that drastically reduces time and costs to bring a new drug to the market.”

The UH Cancer Center announced a $5 million grant from Hawaii’s governor to aid in the continued research to fight cancer in FY 2018 and 2019. The mesothelioma community is hopeful this money helps lead to a new, effective treatment for mesothelioma patients.

“As governor, I am committed to providing additional resources to combat cancer and engage in cancer research in Hawai’i,” Governor David Ige in the December 14 press release. “With our rapid advancements in technology and medical research, it’s time to find a cure once and for all.”

See the full study from UH researchers in the March 15 issue of the Journal of Translational Medicine.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5353897/

 

Sources

  • UH Cancer Center
    http://www.uhcancercenter.org/about-us/news-room/news-releases/465
  • 2014 press release from UH
    http://www.uhcancercenter.org/component/content/article/18-news-releases/344-cancer-from-asbestos-caused-by-more-than-one-cell-mutation

 

 

Patient Engagement As Best Mesothelioma Care

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!

Mesothelioma Warrior _ Advocate Lou Williams

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.”

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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
Mesothelioma Applied Research

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.

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