Mesothelioma Help Cancer News
Mesothelioma Survivor Lou Williams Steps Up Her Drug Advocacy Efforts
Lou Williams wants to make the drug that has helped her survive mesothelioma affordable for her fellow Australians struggling with the asbestos cancer.
Lou lost her father to mesothelioma in 1985 and she has battled the disease herself for nearly 13 years. With the help of a new drug, Keytruda, Lou’s tumors have begun shrinking and she has a new lease on life.
“Keytruda has given me back my life, as my body was literally shutting down,” Lou told MesotheliomaHelp via email.
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“I am now once again living my life with quality, strength and determination.”
As her strength returns, so does her resolve to fight for other mesothelioma victims. She is now focused on making Keytruda available to Aussies at a reasonable cost.
On Sept. 3 Lou will have her eighth dose of Keytruda, an immunotherapy drug from Merck approved in the U.S. and Australia for melanoma, but not yet approved in either country for mesothelioma. For Australians, that means a mesothelioma patient must pay thousands of dollars per dose, administered every three weeks—a deal breaker for many.
Lou Working With Australia’s Pharmaceutical Benefits Scheme
Keytruda is being touted as one of the biggest breakthroughs in mesothelioma treatment. In the simplest of explanations, Keytruda enhances the body’s immune response to cancer, allowing natural defense mechanisms to kick in and fight mesothelioma tumors. 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.”
After having exhausted all of her treatment options earlier this year and being at death’s door, Lou has, with regular Keytruda doses, rebounded beyond what she and others thought was possible. She said in an August 20 Examiner article that her palliative care nurse, husband and oncologist all say her recovery has been “miraculous.”
It has also been expensive. Lou acknowledged in a recent blog post that having quality of life back is priceless, but “Our credit card is taking a battering.”
To make Keytruda more accessible for other mesothelioma sufferers, Lou’s goal is to get the drug added to the Pharmaceutical Benefits Scheme (PBS). This would allow Australian oncologists to offer the treatment to mesothelioma patients free of charge or for a negligible amount.
The PBS is a government run service available to all Australian residents who hold a current Medicare card. Through the PBS, the Australian government subsidizes the cost of medicine for most medical conditions.
“We need to have Keytruda in the PBS list alongside melanoma so others diagnosed with mesothelioma can have another treatment option to discuss with their oncologist,” Lou said.
Lou and her husband met with their local Federal Member of Parliament in late July to get the PBS to accept Keytruda on the mesothelioma treatment list. She reported in her August 4 post that her local Member Parliament’s office told her that they have made initial contact with the drug company and are anticipating discussions later this month, a development Lou described as “very promising”.
Lou is passionate about seeing asbestos banned globally. Her work with the Asbestos Diseases Foundation of Australia, Asbestos Disease Awareness Organization of the U.S., and countless other organizations, as well as her non-stop media tour to get the word out about the dangers of asbestos, has impacted people worldwide.
But for Lou, it still is not enough.
“It would mean the world to me knowing that those diagnosed with mesothelioma can have freedom and peace of mind choice without the worry of cost to consider,” said Lou.
Follow Lou’s mesothelioma and advocacy battle on her blog at “Asbestos – Living with Mesothelioma in Australia – Louise (Lou) Williams.”
You can contact Lou at [email protected].
Photo Credit: The Examiner
Sources:
- Pharmaceutical Benefits Scheme
http://www.pbs.gov.au/info/about-the-pbs#What_are_the_current_patient_fees_and_charges
Advocacy for the Mesothelioma Community May Evolve Over Time
Unfortunately, there are countless members of the mesothelioma community, and our numbers are growing by the day. Each one of us advocates for those affected by this disease in our own way. Some take a more “in your face” approach, some quietly talk to their family and friends, and still others are somewhere in between. No matter where you find yourself, your efforts are appreciated.
For my family, a lot of the level of involvement that we had at any particular time, depended on where Dad was in his treatment process and his overall health. As much as we wanted to be “all in” all of the time, it just wasn’t possible. Our number one priority had to be taking care of my father, while praying for those who were able to be more active at that point.
Emotions can play a big role in someone’s level of involvement and willingness to share their story. For example, when we were grieving my Dad’s loss, I sort of stayed on the outskirts of things for a bit. The feelings of sadness and pain were too raw and I needed some time to sort through everything before I felt ready to dive back in. For others, these feelings may be a catalyst to act and act now. Everyone is different and will respond in the way they feel best for them.
It’s ok to choose your own way to advocate. Even our silent members are an important part of this community. We all have a shared bond that we wish we didn’t, but we have helped each other through the awful highs and lows that are part and parcel with this cancer. We all have our own story to share in whichever way we choose.
Study Shows That Asbestos Risks Remain Decades After Industry Departs
An Italian study published back in May found that malignant mesothelioma cases tend to be concentrated around industrial facilities that use asbestos. A new Italian study finds that mesothelioma incidence near industrial areas remains high long after an asbestos-using industry ceases operations.
Asbestos is the only known cause of mesothelioma, an incurable cancer affecting the membranous lining of the lungs and abdomen. Most cases of mesothelioma are related to occupational asbestos exposure. Cement factories, shipyards, automotive plants, food processing facilities, power plants, and steel plants are among the major sources of occupational asbestos exposure.
Not all asbestos exposure, however, is directly attributable to a person’s work activities. People can also be environmentally exposed to asbestos in areas where asbestos industries operate.
One such area is Casale Monferrato in Northwest Italy, the former home of the Eternit asbestos-cement plant, which closed in 1986. An Italian court in 2012 convicted the plant’s owners of causing the asbestos-related deaths of more than 3,000 people. While many of those people worked at the Eternit plant, others merely lived near the plant.
Casale Montferro is the subject of a study published recently in Occupational & Environmental Medicine. The study authors identified 200 cases of pleural mesothelioma diagnosed in Casale Montferro residents between 2001 and 2006 in an effort to quantify the association between pleural mesothelioma and asbestos exposure.
They discovered that the odds ratio (OR, a measure of association between an exposure and an outcome) of an asbestos-exposed individual developing mesothelioma ranged from 4.4 to 62.1, with increased exposure over time resulting in a higher OR. Subjects never occupationally exposed to asbestos had a mesothelioma OR of 3.8 to 23.3, while an OR of around 2 was observed for people living in homes near buildings with large asbestos cement parts.
The findings draw attention to the fact that asbestos health risks linger in the environment long after asbestos industries vacate. In addition, they serve as a reminder that asbestos disease can occur in people who never directly handled asbestos on the job.
“Risk of [pleural malignant mesothelioma] increased with cumulative asbestos exposure and also in analyses limited to subjects non-occupationally exposed. Our results also provide indication of risk associated with common sources of environmental exposure and are highly relevant for the evaluation of residual risk after the cessation of asbestos industrial use,” write the study authors.
The Italian study has implications for America and other countries with a history of industrial asbestos use. U.S. asbestos use peaked in the mid-70s, but asbestos diseases, which have a latency period of 10-40 years or more, continue to kill an estimated 12,000-15,000 Americans.
But the United States, unlike Italy, has not banned asbestos. While both countries deal with the residual presence of asbestos-containing materials from a bygone industrial era, the United States is unique among industrialized nation for its ongoing importation and use of asbestos.
Anyone interested in taking part in the fight against asbestos should visit the EWG Action Fund website.
The Inconvenience of Mesothelioma
It was a Sunday afternoon. My husband and I had just gotten to my parent’s house and were planning to go to the hospital with them the next morning for Dad’s procedure. They were going to go in, find out what was causing the fluid in his lungs, fix it or come up with a treatment plan. He was going to be in the hospital a couple of days, come home, and be fine. Mike and I were going to leave for home on Wednesday and participate in a home show on Thursday. Everything was supposed to be fine.
The procedure was over and the surgeon took me and my family into a private room. I looked at Mike and said, “This isn’t good.” The doctor gently delivered the news that would forever change our lives. “It looks like a mesothelioma.” At the time, I didn’t understand what that meant, but once the reality sunk in, I began crying and shaking uncontrollably. As I peered around the room and saw the looks in everyone’s eyes, I knew that this battle had just begun and that everything was going to be different from here on out.
Mesothelioma began its reign over our lives. Every waking moment and the majority of my dreams were consumed by it. I thank God that we had some truly miraculous moments during our journey with this awful cancer, but it was still always at the fronts of our minds.
When Dad lost his battle to the disease on October 15, 2013, he was freed of mesothelioma; those of us left behind were not. The remnants of mesothelioma are seen in my family and me every single day. There is always a bit of sadness, missing Dad and wishing he were here for every moment. There is an empty place at the table, an empty rocking chair, and an emptiness in every conversation where his laugh should be interjected.
Mesothelioma is so many things. One thing it is for sure is an inconvenience… not necessarily in the traditional sense of the word, but in a harsher way. Our lives were changed and impacted in ways we could never have prepared ourselves for. This disease is a game changer, and not for the better.
Mesothelioma Nurse Explains The Need for a Caregiving Team
Having mesothelioma can be devastating and overwhelming. It makes your mind and your loved ones’ minds spin. There are a thousand questions you have, both answered and unanswered. I have answered many of these questions, but over the years I have asked my share of questions as well. One of the most important things I have learned from the patients and their families, is that a strong care team is vital to recovery.
I have watched each case, and I have noted what seems to work and what doesn’t always work. I would say that having a strong support system is definitely key to easing the stress of the mesothelioma patient. You should not only designate a primary caregiver, but you should also select other friends and family members who can serve as backup.
You may think that you and your significant other can handle what comes along with mesothelioma, but that is not always the case. Things can go wrong, or at least not work out exactly how you figured they would. It happens more times than not. If possible, you should have people around you who are committed to helping you with all of your loved one’s healthcare needs.
Who can be there for you at the drop of a hat if you need a ride to a chemotherapy appointment, or if you need to see a doctor when you are not feeling well? In the best possible situation, you could have three to four people who have a flexible schedule and are able to commit to being available with little notice.
Recently a middle-aged patient and his wife came in for treatment. Unfortunately, things have not gone according to plan. The patient’s stay in the hospital has been extended, and feels like forever to his wife. This unexpected development has left her frightened, alone, and far from any other support system that she has. Her reactions have taken a toll on her husband’s emotional well being, and have challenged the medical professions who are caring for him.
Her fear and frustration have become crippling to her. She is the primary support for her husband, but she has little, if any, support for herself.
It is ok to be the caregiver and to acknowledge the need of time for yourself. There are support staff within any large medical institution who can offer you support. They can be helpful and are great sounding boards, are non-judgmental and they can see your unique situation from a different perspective.
After a rough few days the wife agreed to call her sister to come and help her, taking all of the responsibility off her shoulders, and sharing it. A true sign that strength is in numbers!
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
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