Precious Dreams Foundation Honors Board Chair Joseph Belluck
The Precious Dreams Foundation’s mission is that every child deserves to feel comforted and secure. That’s why – fully believing in the cause – Belluck & Fox managing partner Joe Belluck has volunteered as the Executive Board Co-Chair of the Foundation since 2017.
Recently, he was honored at the Foundation’s 11th Annual Laughter and Lullabies Gala, benefiting the service and support of underserved youth. He was presented with the Miracle Maker Award, which recognizes his significant contributions to the organization’s growth and expansion.
Founded in 2012, Nicole Russell and Angie Medina responded to the recognized need for mental health awareness and sleep support for young people in foster care and homeless shelters. The Precious Dreams Foundation partners with foster homes and homeless shelters that have observed the benefits of teaching self-comfort and mental health services.
Joe’s recognition goes beyond the Miracle Maker Award and Board Co-Chair. He has been supporting the work of the Precious Dreams Foundation for several years. If you’re looking to get involved in the foundation, you can sponsor, volunteer, or donate. For more information on how to get involved, please visit https://www.
Should mesothelioma patients get the COVID-19 vaccine booster?
When dealing with malignant mesothelioma it is important to take care of your health and wellbeing both physically and emotionally. As we all know the past year and a half we have been dealing with the COVID-19 virus and disruptions to our health and lives. Progress has been made with testing and vaccinations but not without questions.
According to the U.S Coronavirus Vaccine Tracker as of August 2021, 62% of the US population have received at least one dose of the vaccine. Fully vaccinated people make up 53% of the population.
It is expected that this year the COVID-19 booster shot will be made available for everyone in the United States to provide additional protection against the COVID virus. For some people they may have already received their third shot.
What is the difference between a third dose and a booster shot There are different reasons for people to get a third dose and a booster shot.
The patient’s that have already received the third dose are receiving it because the first two doses may not have mounted enough of a defense against COVID-19 initially. For some people who have a compromised immune system it has been found that they had little or no protection following the two doses of mRNA COVID-19 vaccine. Certain cancer patients and survivors have received a third dose already to strengthen their immune system response. It is estimated that more than a million Americans have received an extra vaccine, a third dose, and they have compromised immune systems with the goal to strengthen their immune systems response against COVID -19.
The reason for the booster dose is that protection from the virus may have reduced and worn off over time. The current recommendation for when to receive your booster shot is 8 months after the last dose. The COVID-19 vaccination booster is being offered after 8 months of completion of the first two vaccination shots. It will be available for free and like the initial vaccination, it is believed to be highly effective, safe, and it works.
The decision to get or not get a COVID vaccination is one that has been talked about with much passion. For people diagnosed with malignant mesothelioma, talk to your medical team. Listen to the experts and protect yourself and your loved ones!
Planning for Fear with a Diagnosis
When we are living and planning our lives we assume we will be here to complete our plans, to reach our goals, to live a life as we want. But what happens when plans are interrupted by a health challenge? Suddenly all of our plans, goals, and dreams are in flux.
No person is immortal. We know that on an intellectual level, but we usually don’t think about it on a daily basis. The complexities of our lives and our everyday routines allow it to stay in the back of our minds.
When faced with something like a diagnosis of malignant mesothelioma, is it possible to get back to the comfortable level we had before? To push dying back to the place it held in our heads before being diagnosed?
Talking and thinking about dying is usually something we all try to avoid. For some people they have an uncommon fear of death. Thanatophobia is a term used for fear of death or fear of the dying process. This fear can lead to anxiety. Treatment for this condition focuses on learning to refocus the fears, and talking about your feelings and concerns. Some of the symptoms of this anxiety based condition are panic attacks, dizziness, sweating, heart palpitations, nausea, stomach pain, and sensitivity to hot or cold temperatures.
When diagnosed with a new medical condition these symptoms could be attributed to the new diagnosis. When the symptoms are sorted out and anxiety is suspected, it will help the person to speak with someone and talk about their fears.
It can be a challenge for many people to obtain a balance between living and being consumed with anxiety that you cannot enjoy the present. Once people are diagnosed, they often ask how long do I have? The answer usually depends on the stage of the disease, what kind of physical shape you are in, and what you want. That is the intellectual answer. Emotionally, many people don’t hear any of it because they are overwhelmed with anxiety at the thought of dying.
Recognizing that anxiety is a part of the diagnosis of any serious health challenge, and one that needs to be treated as well as the physical symptoms of the disease, will lead to a healthy approach. The goal is to live as best you can both physically and emotionally.
We all strive for balance. Balance with accepting what life challenges us with, and dealing with those challenges, to live our healthiest lives both physically and emotionally.
Help is available. Talk to someone. Reach out to Belluck & Fox today if you’ve been diagnosed and need assistance.
Living a Life that Matters
When someone is diagnosed with a serious medical condition facing a life-altering and possibly life-ending disease, suddenly the fact that we are all mortal slaps us in the face. Most people research the disease, go to medical experts, and find out everything they can about the disease looking for a cure.
At different points of the journey, people often ask themselves what has been and will continue to be important to me in this life. Did you make a difference? Were your relationships strong and sustaining? Were we the best spouse, friend, or parent that we could be? How will we be remembered?
When Pete Frates faced these questions after being diagnosed 7 years ago with a fatal rare disease, Amyotrophic Lateral Sclerosis, he was a young man. He was not married and was at the point that most people consider the beginning of his life. Like malignant mesothelioma, ALS is a rare disease. Funding for rare disease research is difficult to find. Pete Frates and his family – through the ice bucket challenge – raised hundreds of millions of dollars for research into ALS.
Not the path he had chosen, not what anybody would choose. He married, had a child, and inspired the world with his courage. When he died last Monday at the age of 34, he left the world a better place.
Disease does not respect our plans or our dreams. How we handle health challenges and if we go public with our journey is a decision that is up to the individual. For Pete Frates and his family, their decision made a lasting impact.
All of us do not have the opportunity to raise hundreds of millions of dollars for research. We all can live our best lives inspired by this exceptional young man. We are humbled and inspired by what Pete Frates and his family and community have done.
He made a difference. Rest in peace.
“At the end of life, what really matters is not what we bought but what we built; not what we got but what we shared; not our competence but our character; and not our success, but our significance. Live a life that matters. Live a life of love.”
– Author unknown
Update on Banning Asbestos in the United States
Asbestos exposure is the leading cause of most people that are diagnosed with malignant mesothelioma, and is linked to the deaths of approximately 40,000 Americans a year. Those deaths are caused by lung cancer, asbestosis, cancer of the larynx, and ovarian cancer.
Asbestos is a naturally occurring mineral that is also a known carcinogen, and is not banned in the United States. The importing of asbestos into the United States has actually increased in recent years. Asbestos is found in houses in insulation and multiple products have asbestos in them.
The Alan Reinstein Ban Asbestos Now Act of 2019 is a bill that will ban asbestos importation into the United States. The bill has been named for Alan Reinstein, the late husband of Linda Reinstein who died of malignant mesothelioma. Linda Reinstein is one of the co-founders of Asbestos Disease Awareness Foundation who has been working tirelessly for banning asbestos for many years.
According to the ADAO website, the bill would:
- Ban importation and use of asbestos and asbestos containing products within one year of enactment.
- Require that Chlor-alkali plants using asbestos diaphragms would need to eliminate the use of asbestos and convert to non-asbestos technology following a transition period.
- Establish a new Right-to-Know program to require anyone who has imported, processed and distributed asbestos to report and disclose to the public how much asbestos has been in U.S. commerce, where and how it has been used, and who has been exposed.
- Require the National Academy of Sciences (NAS) to conduct a comprehensive study of risks presented by “legacy” asbestos used in buildings constructed decades ago but still present in millions of residences, businesses, factories, public buildings, and schools.
- Stringently control the presence of asbestos contaminants in consumer products and construction materials.
- Apply to the hazardous Libby Amphibole form of asbestos, found in attic insulation in millions of homes.
This bill was advanced out of the Committee on Energy and Commerce by a bipartisan vote on November 19th. The next step is to be voted on by the full House of Representatives. During these divisive partisan political times this is a very important step toward the goal of passing this bill into law.
As we pause this week to give thanks for our blessings it is also a time to reflect. For the mesothelioma community it is a time to be thankful for the support of tireless advocates for all their work on making banning asbestos in the United States closer to reality. The work of a few to benefit all. Thank you for trying to make this world a safer, healthier planet.
If you or someone you love has been diagnosed, please reach out to Belluck & Fox for a free consultation. With laws and information available to patients changing all the time, we can be the experts that help you find justice.
Are you a mesothelioma “survivor?”
Many people who have had cancer describe themselves as survivors, or warriors of cancer. Some people prefer “living with cancer.” A cancer survivor is a person with cancer of any type who is still living.
There are more people who are survivors of Mesothelioma than in the past. Some survivors jump out on social media, some are busy with fundraising continuing to try to advance treatment, others quietly lead their lives. Survivors come in many different faces. Yesterday I ran into a middle-aged woman who was a survivor. It has been many years since her initial treatment during which time she was very ill. She worked very hard and had her struggles, but seeing her now, one would never know of her battle with Mesothelioma. Today, from my observation, she is living her life and fulfilling her dreams. She has turned her hobby of art into a form of fundraising. She appears to be enthused about her new idea which creates double the excitement – she is a survivor of a rare disease, and she is trying to improve the lives of others who will battle this disease.
Getting diagnosed with Mesothelioma can be emotionally devastating, but for some, it has shown them something different. Not only do they want to live free from this disease but some want to make a difference for others. As earlier stated, some will jump out and announce what they are going to do while others will quietly lead by example. Some may connect with a new Mesothelioma patient and help coach them through the process. Despite what you do, the goal is to live. There are a million statistics out there regarding malignant mesothelioma, possibly more negative than positive, but be assured there are survivors who are leading busy, productive lives.
Some Individuals who have been faced with cancer prefer other terminology instead of survivor. Some people use the word warrior, or plain and simple “badass.” People’s terminology is usually associated with their personality and their experience with cancer. Whatever the label you prefer no doubt cancer has changed your life and the lives of the people you love. Many people explain that they appreciate life more, they are more accepting of themselves. They also experience anxiety about their health and feel unsure how to cope with life after treatment. We have met many types of people who have shown us how they live their lives, not defined by a diagnosis. Whatever path they chose there is no right or wrong way, it is just the way it is.
Whatever terminology you choose the best way to become that term is to get yourself to a Mesothelioma center. Your odds of beating this or treating this disease as a chronic illness are best fought when you are at a Mesothelioma Center of Excellence. Everyone wants to beat this disease, so reach out to make a phone call or email a healthcare professional with expertise in this field. Find the professional group of caregivers who are consistently working and whose approach to treatment aligns with what the patient wants.
Whether you’re a survivor, warrior, or badass, Belluck & Fox can get you the information and justice you need. Reach out for a free consultation today.
November is National Family Caregivers Month
November is National Family Caregivers Month. This month is set aside to honor the people that every day are providing care for relatives, friends, spouses, and loved ones who need assistance in order to stay at home. These caregivers are usually not paid. The number of unpaid caregivers in the United States is approximately 40 million at any one time according to AARP.
Patients that are diagnosed with malignant mesothelioma and their families often have one person who the caregiving falls to. This may be by plan or perhaps just the way it turned out. During the course of their journey with mesothelioma the caregiving may take many forms. From coordination of appointments, to physical care, and emotional support, the caregiver is a vital part of the team.
These family caregivers are all around us. Of these vast numbers almost half are adult children caring for their aging parents. More than 60 percent of family caregivers are working outside the home in addition to their caregiving responsibilities. One in five are caring for their spouse. The caregivers are often not only working, but also raising their own families. They are adults of all ages performing these tasks. They are the major source of long term care in the United States.
As a result of all these responsibilities, the person whose health that suffers is often the caregiver. Being a caregiver can take a physical, emotional, and financial strain on the person. Family caregivers cannot “do it all.” There needs to be a balance for the caregiver caring for their loved one and for themselves. There are increased incidents of alcohol, tobacco, and drug abuse, anxiety disorders, cancer, diabetes, and heart disease among many caregivers.
There are organizations to support caregivers such as AARP, Family Caregiver Alliance, Office of Women’s Health:Caregiver Stress, Caregivers Action Network, Family Caregiver Alliance, National Alliance for Caregivers, and the National Family Caregivers Association.
Look around if you are not caring for someone, chances are you know someone who is. Acknowledge what a hard and difficult job it is and reach out. There are things that you may be able to help with. Sometimes just listening will help.
Thank you to all the unpaid family caregivers – you make a huge difference everyday!
New Tumor Treatment for Malignant Pleural Mesothelioma Approved by FDA
In May 2019, the Food and Drug Administration approved a device for the treatment of malignant pleural mesothelioma under the Humanitarian Use device section of their policy on rare diseases.
What is the new treatment?
This new therapy is Novacures’s Tumor Treating Fields delivery system, or NovoTTF-100L. Tumor treating fields are mild electric fields that pulse through the skin or scalp and interrupt cancer cells’ ability to divide. Electrodes are attached to the skin and attached to a portable device. The person keeps the portable device with them as they go about their activities of daily living. The treatment is portable and does not need to be done in a hospital or clinic setting. The therapy is continuous but can be interrupted for short time everyday. It is advised to be attached 18-20 hours a day to the person.
This treatment is non invasive and does not cause side effects that other treatments might, such as nausea, vomiting, diarrhea, or fatigue. The tumor treating fields work by acting upon rapidly dividing cells of cancerous tumors without affecting normal cells. It targets highly charged proteins in the cells. The proteins are essential to the process of cell division which is how the tumor grows and spreads. With the tumor treating fields device the tumor is then prevented from dividing and growing.
Why was it approved?
Malignant mesothelioma is a rare disease and thus fits the description for approval under the Humanitarian Use Device clause. In order to qualify for this category the FDA must determine that the medical device is intended to benefit patients in the treatment of a disease that affects or is manifested in not more than 8,000 individuals in the United States per year.
The last relevant treatment approved by the FDA was chemotherapy with Pemextred and Altima in 2004.
How was it approved?
The Tumor Treating Fields device was first approved in 2011 for treatment of aggressive brain tumors called glioblastomas. For malignant pleural mesothelioma a clinical trial called STELLAR was conducted in Europe using this technology with patients that have the disease. The results were positive with an increase of overall survival in patients who took part in the trial, all of whom were not surgical candidates. It was used in conjunction with the approved chemotherapy for malignant mesothelioma, Pemextred and cisplatin.
What does it all mean?
This is progress for some patients with malignant pleural mesothelioma. It gives them another option. This is not a cure, but an additional treatment to help overall survival used in conjunction with the first line chemotherapy, pemetrexed plus cisplatin.
When meeting with your mesothelioma expert and team ask if this treatment option would be beneficial for you or your loved one. If you have been diagnosed and are seeking information or justice, please reach out to Belluck & Fox for a free consultation.
Celebrating Community on Mesothelioma Awareness Day 2019
You might often hear people refer to the small mesothelioma “community” and the support they offer each other. Being a rare disease that affects people of all ages, cultures, and socioeconomic status, the mesothelioma community is a diverse group. They range from the people that are working on the major cause of malignant mesothelioma, banning asbestos, researching and spreading awareness of this rare cancer, and of course, those who have been diagnosed with it.
A definition that reflects what a community is from www.dictionary.com;
- Self-organized network of people with common agenda, cause, or interest, who collaborate by sharing ideas, information, and other resources. Virtual communities consist of participants in online discussions on topics of mutual concern, or of those who frequent certain websites.
- Cluster of common interests that arise from association.
The mesothelioma community is a self organized network of people. They or their loved ones have been affected by malignant mesothelioma, or are medical and legal professionals that are dedicated to helping research for a cure, taking care of patients, and advocating for them and their families.
Thursday, September 26, is Mesothelioma Awareness Day 2019. Awareness days are used to bring attention to diseases and how important research is towards a cure. Mesothelioma Awareness Day was started in 2004 by the Meso Foundation. Under the direction of the Foundation, now the Mesothelioma Applied Research Foundation, the community is encouraged to wear blue, and raise awareness of malignant mesothelioma, by educating people about this rare disease.
Another group trying to raise awareness to ban asbestos in the United States is the Asbestos Disease Awareness Organization. ADAO, founded in 2004, gives asbestos victims a united voice to raise awareness of the continued danger of asbestos exposure. ADAO is actively working to pass legislation to ban asbestos in the United States, a fact most people do not know.
There are other resources available to help support mesothelioma victims and their families, reach out, get involved if you can.
We strongly encourage everyone to spread the word, support the mesothelioma community in whatever way you can!
World Lung Cancer Day
August marks the beginning of a new summer month, and with it, World Lung Cancer Day. Lung Cancer continues to be one of the most common cancers worldwide, claiming more lives than breast, colon, and prostate cancers combined. In the early twentieth century, lung cancer was rare. Today it is one of the most common cancers in the world, affecting nearly one in five cancer deaths globally. Factors that attribute to lung cancer are smoking, asbestos, and air pollution, to name a few. If you are a smoker you are 24-36 times more likely to get lung cancer than a nonsmoker.
Those who are part of the American College of Chest Physicians (CHEST) and the Forum of International Respiratory Societies (FIRS) use this day to communicate, celebrate, and support those impacted by lung cancer throughout the world.
The International Association for the Study of Lung Cancer (IASLC) holds a World Conference on Lung Cancer – the largest meeting dedicated to lung cancer and other chest malignancies. Last month the IASLC group hosted a dedicated Mesothelioma Forum of medical professionals sharing the latest clinical trials. Although the research is hopeful, there is much work to be done. Collaboration throughout the world leads to more treatment options. More research could help end this disease. The other factor is education, and reaching as many people as possible with knowledge of the risk factors that can lead to a diagnosis of lung cancer.
The goal of World Lung Cancer Day is to bring education and attention to a disease that still remains a global threat to health. Therapies are still being developed and education is still needed. People throughout the world continue to smoke cigarettes, and now the latest fad of vaping whose long term effects are unknown.
According to the World Health Organization, 34,000 Americans die from preventable asbestos-caused lung cancer each year. Asbestos causes lung cancer and causes Mesothelioma. Despite how you have contracted your disease, please early treatment and detection are you best fight against these diseases.
Collaboration, awareness, support, and education are all factors in making the first day of August World Lung Cancer Day annually.