Mesothelioma Help Cancer News
A Month of Advocacy, Education and Support for Mesothelioma Patients and Their Families
November is filled with opportunities for mesothelioma patients and their families to raise awareness of the disease, and to educate the American public of the issues facing the mesothelioma community. Not only is November Lung Cancer Awareness Month, but it is also National Hospice and Palliative Care Month and National Family Caregivers Month.
Those who live with pleural mesothelioma, and those who care for someone with mesothelioma, know that educating the public about the struggles facing rare disease sufferers often takes a focused effort from organizations, the government, the medical community and many volunteers. Join in with the organizations sponsoring the campaigns that are dedicated to promoting awareness, honoring those dealing with terminal cancers and to increasing support for the communities.
According to the Lung Cancer Alliance, lung cancer is the deadliest cancer in the world. In fact, more people die from lung cancer than breast, colon and pancreatic cancers combined. Over 158,000 Americans die from lung cancer each year – that is approximately 432 Americans every day. Pleural mesothelioma, a rare, aggressive form of lung cancer caused by past exposure to asbestos, is one of the most difficult cancers to treat and is diagnosed in close to 3,000 Americans each year.
Many mesothelioma patients are faced with treatments aimed at managing their symptoms and improving their quality of life as the tumors continue to spread and their health declines. Doctors often order palliative care which is intended to control pain, stop bleeding, relieve pressure, and to allow patients to be at home with their loved ones.
According to the National Hospice and Palliative Care Organization (NHPCO), “every year more than 1.6 to 1.7 million Americans living with life-limiting illness, and their families, received care from the nation’s hospice programs in communities throughout the United States.”
With an effort to encourage citizens to increase their understanding and awareness of care at the end of life, NHPCO has declared November National Hospice and Palliative Care Month. NHPCO encourages everyone to “celebrate all that the hospice and palliative care community has achieved.”
National Family Caregivers Month is also a time to recognize mesothelioma patients and their families. According to the Caregiver Action Network, more than 65 million family caregivers in this country fulfill a vital role on the care team. For mesothelioma patients, the caregivers are vital for helping them follow their medical, dietary and exercise regimens. Caregivers are called upon to deal with the myriad medical appointments, medical bills, updates to other family members and friends as well as ensuring that the household runs efficiently.
In this year’s presidential proclamation recognizing November as National Family Caregivers Month President Obama declared:
“For centuries, we have been driven by the belief that we all have certain obligations to one another. Every day, caregivers across our country answer this call and lift up the lives of loved ones who need additional support. During National Family Caregivers Month, let us honor their contributions and pledge to continue working toward a future where all caregivers know the same support and understanding they show for those they look after.”
This year, CAN is focusing on the theme “Respite: Care for Caregivers.” The organization reports that a respite for the caregiver is not a luxury, rather “the chance to take a breather, the opportunity to re-energize.” And, CAN reports, this is critical for the caregiver to protect his or her well-being.
To find out what you can do to help mesothelioma patients and their families during November visit these organizations’ websites: Caregiver Action Network, Lung Cancer Alliance, National Hospice and Palliative Care Organization.
Know more about Mesothelioma and how you can deal with it.
Sources
- Lung Cancer Alliance
http://www.kintera.org/faf/error/errorEvent.asp?err=c&ievent=347722&lis=1&kntae347722=B249B0A66E2742FDAC6A93B9B4BE2FD4 - National Hospice and Palliative Care Organization
http://www.nhpco.org/press-room/press-releases/national-hospice-and-palliative-care-month-proclamation - Caregiver Action Network
http://caregiveraction.org - President Obama
https://obamawhitehouse.archives.gov/the-press-office/2015/10/30/presidential-proclamation-national-family-caregivers-month-2015
Mesothelioma Nurses are Vigilant of Patients and Their Families
When people are diagnosed with cancer, and specifically, mesothelioma, many emotions come to the surface. Initially, a mesothelioma patient might have many decisions to make regarding treatment, chemotherapy, surgery, and/or radiation. Where to start and continue treatment can be a source of stress for some patients and families. While trying to maintain the best physical health, sometimes the patient’s and the family’s mental health can take a back seat.
There are more than three million cases per year of depression in the U.S. It is estimated that 25 percent of cancer victims will suffer from depression. One definition of depression is the persistent feeling of sadness and loss of interest in things that you once enjoyed. Some of the signs and symptoms to help recognize depression include: sadness, fatigue, abandoning or losing interest in hobbies or other pleasurable pastimes. Other signs include social withdrawal and isolation, weight loss or loss of appetite, sleep disturbances, loss of self-worth, increased use of alcohol or other drugs, fixation on death through suicidal thoughts or attempts.
Recently, we took care of a mesothelioma patient whose course was not smooth. He had a prolonged hospitalization, but he was eventually discharged after one month in the hospital. Accompanying him was his wife, who suffered from depression before her husband’s diagnosis.
With all the planning and travel necessary to get to our mesothelioma center, she focused on her husband and his needs, but she only brought a limited supply of her anti-depressants. As this stressful time went on, it was apparent that she was alone, frightened, and without her medication.
Her behavior became cause for concern for all of us. She was isolating herself in her hotel room, was often angry at the staff for her husband’s lack of progress, stayed in bed, and visited erratically. It was apparent that she needed help. With her cooperation and consent, her doctor was notified and arrangements were made to get her medication. Her husband was eventually discharged, and she was again able to be a loving, supportive presence to him.
Mesothelioma patients come with families, and they are a very important part of the team. In order to successfully treat the patient, a functional, supportive family is critical. We are all working towards the same goal, and sometimes we may need a little help along the way.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
Know more about Mesothelioma and how you can deal with it.
Gaining Comfort Knowing Dad is Mesothelioma-Free in Heaven
As I write this, it is the eve of the second anniversary of my Dad’s passing. This is always an extremely challenging time of year for me. I think back to all the “lasts”- the last time I saw Dad, the last conversation, his last day, his last night. I tend to dwell on these times. I then flip-flop to the “firsts”- our first full day without him, our first Christmas without his special family gift showing up, the first birthday where he wasn’t here. Those are hard as well.
I should think of all of his “firsts” though. What were his first moments in Heaven like? Who was the first person he saw? What was the first thing he did? He would have, without a doubt, been in awe (and probably still is) of everything that God has there for him.
For us here, death is a finality, but for Dad, it was a new beginning. While I stay here grieving, he is happy. He got a new body, free of mesothelioma and any pain. Knowing this, I try to recognize that he is in a beautiful place now with no sadness or grief; however, my heartbreak continues.
I often think that if I could just see him or hear his voice things would be so much easier. If I could just have five more minutes with him, maybe I could have some more peace with the situation. Maybe, but then again, I believe that everything happened just as God intended. And even though I can’t see or hear him, I feel like he is watching over me and my family every day.
Even with the pain of losing my Dad, life has continued with many blessings: my daughter who will be turning one year old soon, the health of my family, the list could go on and on. I talk to Dad all the time and ask him to pray for us, and I truly believe that he hears me. He watched out for me for my whole life, why wouldn’t he do the same from Heaven?
Although I will always miss Dad and everything about him, I try to focus on all of the gifts that God has given me. It is hard to recognize them at times, especially right now, but I know that He is taking care of Dad, and that is the greatest blessing anyone could ever want.
Dad, I miss you and love you today and always, and you will forever have a special place in my heart.
A Fall Festival to Raise Funds for the Meso Foundation
On September 26, Mesothelioma Awareness Day, my family and I held a fundraising booth at our hometown festival in Dunbar, PA. Everyone helped in some way either by donating an item, setting up, working the event, or all of the above! We are so grateful for the generosity of our family, friends, and community who helped to make this event a success.
The weather was beautiful, the company warm, and the patrons ready to purchase tickets for baskets, t-shirts, and the “Mystery Prize!” Many people greeted us with stories about Dad and condolences about our great loss. We heard from people who had worked with my father or just knew him from seeing him around town.
A fundraiser to benefit the Mesothelioma Applied Research Foundation was a wonderful way to honor the memory of my father, help others, and to reconnect with friends who care deeply for my family.
Dad loved doing fundraisers before he lost his battle to this terrible disease, and we are proud to carry on the tradition, just as he would have liked. The light from his smile is missing, but the strength of his heart remains.
Mesothelioma Community Celebrates FDA Approval of Keytruda for Lung Cancer Treatment
The mesothelioma community is hailing the recent U.S. Food and Drug Administration’s approval of Keytruda for advanced (metastatic) non-small cell lung cancer (NSCLC). A recent U.S. clinical trial found Keytruda to be effective in controlling mesothelioma tumors in three-fourths of patients, leading researchers to say the results are “encouraging.” The FDA’s approval moves the drug one step closer to U.S. mesothelioma patients.
In an Oct. 2 press release, the FDA announced approval of the immunotherapy drug from Merck, previously approved for use in the treatment of melanoma, for use in the treatment of NSCLC in patients whose disease has progressed after other treatments and with tumors that express a protein called PD-L1. A companion diagnostic test will be used to detect the PD-L1 biomarker in patients.
“Today’s approval of Keytruda is the result of our deep commitment to bring the benefits of immunotherapy to cancer patients,” said Dr. Roger M. Perlmutter, president, Merck Research Laboratories, in Merck’s Oct. 2 press release announcing the approval. “Together with scientists and physicians around the world, we endeavor to improve the lives of patients suffering from these grievous illnesses.”
Keytruda works by targeting the cellular pathway known as PD-1/PD-L1 (proteins found on the body’s immune cells and some cancer cells). By blocking this pathway, Keytruda may help the body’s immune system fight the cancer cells.
Like lung cancer, pleural mesothelioma is an aggressive cancer that is challenging to treat. Pleural mesothelioma is an insidious cancer that lurks in the body for decades until symptoms suddenly appear leaving the patient with life-threatening complications. The asbestos-caused cancer affects the lining of the lungs and often leaves patients with less than 18 months to live after diagnosis.
According to one study from Spanish researchers, PD-L1 is expressed in approximately 20 percent of pleural mesothelioma patients. The researchers reported, “The results of our study could offer new treatment to this population of patients, identifying a subset of malignant pleural mesothelioma who expressed PD-L1 and could be treated with targeted therapies to PD-L1.”
Mavis Nye, a six-year mesothelioma survivor, of England, has been a patient for over a year in a Phase I, no placebo clinical trial for Keytruda, still known as MK-3475 in the UK. Mavis says she has seen “brilliant” results with the drug. Mavis told MesotheliomaHelp that she has nearly complete tumor shrinkage, and “I’m feeling very well as my immune system has been turned back on by the drug.”
Lou Williams of Australia, a 13 year mesothelioma survivor, has received eight treatments of Keytruda, and will continue on it indefinitely. She told MesotheliomaHelp, “Keytruda has given me back my life, as my body was literally shutting down. I am now once again living my life with quality, strength and determination.”
Others in the mesothelioma community are hoping for the same results, and Lou and Mavis have both been tireless advocates in trying to bring the drug to others in their respective countries. While Mavis pushes for broader clinical trial participation, Lou pushes for reduced costs for the drug in her home country.
Hopefully, the time has arrived for an effective treatment for mesothelioma and lung cancer across the globe.
“Our growing understanding of underlying molecular pathways and how our immune system interacts with cancer is leading to important advances in medicine,” said Richard Pazdur, M.D., director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research, in the FDA press release. “Today’s approval of Keytruda gives physicians the ability to target specific patients who may be most likely to benefit from this drug.”
Talk to your oncologist to see if Keytruda can be an effective treatment for you.
Sources:
- Oct. 2 press release (FDA announced approval of the immunotherapy)
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm465444.htm - Merck’s Oct. 2 press release
http://www.mercknewsroom.com/news-release/prescription-medicine-news/fda-approves-keytruda-pembrolizumab-treatment-patients-metas - Spanish researchers
http://www.esmo.org/Conferences/Past-Conferences/ESMO-2014-Congress/Press-Media/Studies-Report-New-Findings-on-Treatment-Options-for-Mesothelioma
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