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Mesothelioma Awareness Day: A Nurses’ Perspective

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“Asbestos exposure is the main cause of pleural mesothelioma. When asbestos fibers are breathed in, they travel to the ends of small air passages and reach the pleura, where they can cause inflammation and scarring. This may damage cells’ DNA and cause changes that result in uncontrolled cell growth. If swallowed, these fibers can reach the abdominal lining, where they can have a role in causing peritoneal mesothelioma.”   www.cancer.org

  • Asbestos exposure has been scientifically linked to causing malignant mesothelioma
  • Asbestos is not banned in the United States in 2016.
  • Asbestos is still imported and used in products
  • Asbestos can still be found in many, many homes, commercial buildings, and schools
  • Asbestos was used in the military on Naval ships and boiler rooms, leading to one third of all mesothelioma victims being Veterans
  • The incubation period from asbestos exposure to developing mesothelioma is estimated to be 15-50 years.

All these facts are commonly known about asbestos role in a person developing malignant mesothelioma by those in the mesothelioma community.

Although not banned, asbestos and asbestos exposure are regulated. Removal of asbestos from a building requires permits, inspections and trained qualified personnel.   It is imperative to remove asbestos in the right way for the health of all involved.

There is nothing new about any of the above information for people in the mesothelioma community. Recently in the newspaper it was reported about a local landlord who owns multiple properties, and was renovating them. Not only did he not obtain the correct permits, he allowed contractors to perform illegal asbestos work on four homes he was renovating. He was brought to court by the Attorney General of Massachusetts, and the Massachusetts Department of Environmental Protection and was fined. The reason for the $100,000.00 fine was putting workers and the public at risk for asbestos exposure. The suit was filed in 2012 and settled in 2016.

Knowing the potentially deadly consequences of exposure to asbestos, how does the mesothelioma community raise awareness? Educate the public? Put a face to this fatal disease? On Monday September 26 the Mesothelioma community will join to help educate people about the real dangers of asbestos, the potentially lethal ways asbestos kills, and the human suffering that involves all mesothelioma victims and their families. Since 2010, September 26 has been the Mesothelioma Awareness Day, as proclaimed by the U.S. Senate and the U.S. House of Representatives.

This year we encourage you to get involved, raise awareness and educate the public to the dangers of asbestos all around us.

– Ellie

How Skilled Nursing Facilities and “Rehab” Facilities Can Help Mesothelioma Patients

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When someone is diagnosed with mesothelioma or any cancer they are often searching for a plan, a road map, a guide. Medically this can include chemotherapy, surgery, radiation, clinical trials. This can also involve hospitalizations, outpatient treatments, series of hospital appointments. radiation therapy. With some patients this can also involve a stay in a rehab facility after surgery or a hospitalization.   This can be a surprise to some patients .

Recently we visited two patients at rehab facilities. One was a gentleman in his 70’s that was discharged to rehab after his surgery. There are many reasons that someone might go to rehab. One of the common reasons is lack of conditioning. After being in the hospital for even a short period of time you can lose muscle mass and strength.   The second patient was a female; she was at rehab to slowly wean off the vent. Progress has been slow, but she is progressing. Both of these patients were sent to rehab facilities to improve their strength, with the goal of returning to their previous level of functioning. At this particular rehab facility, a sign greets all, “Find Your Strength.”

In the United states there are 15,401 nursing facilities according to statistics from the government for the year 2014. This includes all different levels of care. Nursing homes, day programs, chronic care programs, care for patients with chronic illnesses.   Some of the patients will never reach the level of independent living. The nursing facilities are in all sizes and shapes and specialize in different issues.

After treatment for mesothelioma the type of facility that patients are most often transferred to are skilled nursing facilities. A definition from Segens Medical Dictionary: ” is an inpatient health care facility with the staff and the equipment to provide skilled care, rehabilitation and other health services to patients who need nursing care but do not require hospitalization.”   Another definition from Mosby’s Medical Dictionary is: ” a type of nursing home – recognized by the Medicare and Medicaid systems as meeting long term health care needs for individuals who have the potential to function independently after a limited period of care. A multidisciplinary team guides health care and rehabilitative services, including nursing care.”

Like specialized centers for mesothelioma, rehab facilities after surgery or treatments for mesothelioma are specialized. If along your journey with mesothelioma it is recommended that you or your loved one go to a skilled nursing facility- SNF- or rehab facility, remember the goal is to return you to your previous level of functioning. It might be a surprise not to go home after a hospitalization. Remember your journey with living with mesothelioma is a marathon not a sprint.

– Ellie

Why We Created the Mesothelioma Clinical Trial Digest

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Mesothelioma Clinical Trial DigestThe patient’s son was clearly distraught. His previously healthy, active father had been diagnosed with malignant pleural mesothelioma. He had done what most people did in 2016, he began his research with a Google search. He had found the resources he thought he needed. With his fathers blessing he was continuing to research for all options. They were attending a mesothelioma conference together. He raised his hand and asked a question. His voice had a hint of desperation in it. “Where do I go to research current Clinical Trials for patients with mesothelioma?” The expert giving the talk explained that the clinical trials were listed on www.clinicaltrials.gov, under malignant mesothelioma. Sensing the desperation in his voice, the speaker continued to offer a phone number to contact for more information.

There was something about the question and the answer that we couldn’t let go of.   After that part of the conference it struck us how difficult it is to navigate the medical system when you are healthy, let alone when you are diagnosed with a rare aggressive cancer. Progress is made through clinical trials, but the language and the terms are more than confusing. The Mesothelioma Applied Research Foundation is an excellent resource for patients and families. Anything that will start the conversation to increase participation in these trials is worth the effort. In order to progress we need patients to enroll in clinical trials. How do we get the word out about the available clinical trials? Many patients and significant others, family and friends are overwhelmed trying to navigate the system, a foreign world, they have suddenly been thrust into.

The Mesothelioma Clinical Trial Digest was started to help increase knowledge of what clinical trials are available in hopes of increasing participation. Our goal is to make patients and families aware of what clinical trials they might be qualified to enroll in. Often times patients are asked at the beginning of their journey with mesothelioma, whether it be chemotherapy, surgery, radiation, what do they want and how much do they want to fight. Digging into clinical trials information to navigate to hope is not an easy task. The Mesothelioma Clinical Trial Digest has been started to make part of this journey easier. Not everyone is a candidate for every clinical trial. This is a testament to the progress that has been made by patients participating in clinical trials. A new treatment option, an addition to the current standard of care, all must be proven in a formalized clinical trial setting. Each patient and family deserves to be aware of the clinical trials available, having a chance to participate in these trials and hopefully improving their chances for a longer life with good quality.

The hope of the Mesothelioma Clinical Trial Digest is to publicize the options for unique and different treatments which are being explored in many research facilities.

– Ellie

Palliative Care and Mesothelioma

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mesotheliomaMesothelioma is a serious illness. There is no cure currently but, research has extended the time and maintained the quality of life for many people diagnosed with mesothelioma.   Managing the disease and its effect on patients and families takes a team. The only way that malignant mesothelioma will be cured is through collaboration and research- we know these facts, they are well known. From diagnosis through your journey with mesothelioma a vital member of that team should be from palliative care.

What is palliative care? The National Hospice and Palliative Care Organization, www.nhpco.org uses the National Consensus Project’s definition to explain what palliative care is. “Palliative care is patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information and choice.”

In order for a team to function effectively everyone has to have their roles and responsibilities known to them and their other team members. Working together for the best possible benefit of what the patient wants is the ultimate goal. The palliative care specialist is a member of the multi-disciplinary team. The care is given in coordination with other team members.

Palliative care is offered throughout a patient’s journey with mesothelioma, from diagnosis to death and grieving for both the patient and their family members. Hospice has the same principles as palliative care, but is administered when cancer treatments are no longer working or desired by the patient. The focus of hospice is caring not curing.   Palliative care can start with any serious illness and does not always progress to hospice.

Research has shown that palliative care is beneficial to patients and families. It has been demonstrated that patients whose symptoms are controlled, for example pain, are better able to communicate their needs and have a better experience with their medical care. More research is needed into integrating this vital role across the spectrum to all that have serious illnesses. Currently less than 1% of the NIH budget is allocated for research into the role of palliative care

Amy Berman is a nurse and a senior program officer at the John A. Hartford Foundation, her job is to lead efforts to develop, test, and spread evidenced-based models of care that improve the care of older adults. Five and a half years ago she was diagnosed with a type of breast cancer that is very aggressive, with only an 11-20 percent chance of survival to 5 years. In June of 2016, she testified before the Senate Special Committee on Aging, “The Right Care at the Right Time: Ensuring Person – Centered Care for Individuals with Serious Illness.”   To see the testimony and her comments, go to: http://www.jhartfound.org/blog/amy-berman-tells-senate-committee-palliative-care-is-best-friend-of-the-seriously-ill/

The following paragraph of her testimony shows how important palliative care is.

“But perhaps the most important aspect of my care, the reason I am doing so well despite being seriously ill, is palliative care. Palliative care is the best friend of the seriously ill. It is an extra layer of support that goes along with the care provided by my oncologist. Studies have shown that when palliative care is added at the beginning of a serious illness that people feel better and live longer. My palliative care provider has helped me determine what care to opt for and addressed my pain and symptoms. The team-based care also addresses the needs of the family, care coordination, and even spiritual needs.”

For more information on palliative care, go to: www.cancer.gov, www.CAPC.org, www.nhpco.org

Let us know if you have any questions.

– Ellie

Putting Mesothelioma in Perspective: 5 Questions Plus

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At the Harvard School of Education Dean James Ryan gave a speech at graduation that has made the rounds on the internet. He said there are 5 questions plus a bonus question that we should ask ourselves every day. They are:

  1. Wait? What?
  2. I wonder? Why? Or What?
  3. Couldn’t we at least?
  4. How can I help?
  5. What truly matters to me?
  • And the bonus question: Did you get what you wanted out of life – even so?

Thinking about the patients and families that have been diagnosed with mesothelioma these questions asked about their lives, seems to put mesothelioma into perspective. Mesothelioma is an aggressive cancer. The diagnosis throws patients and families into a world that they never planned on being involved in. How can they make sense of this diagnosis and go forward? These questions can prepare us for anything life throws our way, including a cancer diagnosis.

Imagine you have just been diagnosed with malignant mesothelioma. You and your families first response is wait? What? By asking this question you are looking for clarification. You are looking for answers, but asking for time to process what you have been told. You want time to slow down get the facts, make sure you understand.

Then you wonder why? Or if? – the second question. With the diagnosis of mesothelioma, you might think- when was I exposed to asbestos? Or what if we seek expert opinions- where and how? How might you improve the situation?

The third question – Couldn’t we at least? – can help you to get moving. Maybe get an opinion at a mesothelioma center, investigate a clinical trial, explore your options. This question enables a patient and family to move forward. Maybe there is fear in travelling or leaving your comfort zone, but by recognizing these things you can then make progress toward some action.

The fourth question, How can I help? – this can be a time for families to respect what the patient wants. The patient is the expert in their lives- you recognize that and help with what they want to do.

The fifth question is what really matters to me? How do you want to spend the time you have left- what relationships are important?

The bonus question is- Did you get what you wanted out of life- even so? This question is the one that sums it all up. Have you lived your life how you wanted? Despite being diagnosed with cancer has your life been fulfilling? Are you happy with how you have lived? Your relationships? Before, and during your cancer diagnosis. Even so- in spite of the ups and downs of life are you happy with your life?

By reviewing these questions in the context of your everyday life it could help us all prepare for the time when life gives us an unpleasant unexpected surprise and be happy for all the good things in your life.

– Ellie

New Developments in Chemo Administration for Mesothelioma

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When mesothelioma progresses there can be pain and that can decrease quality of life. Recently we wrote about a Clinical Trial at the Moffitt Center designed to deliver chemotherapy locally to patients to help alleviate pain and improve quality of life. This therapy is called trans arterial chemo perfusion. This therapy is being examined for administering of a small amount of chemotherapy via an arterial catheter.

The procedure involves inserting a small catheter usually in the groin and threading it up to the area of the tumor. At that point specific blood vessels that allow the tumor to flourish are identified and chemotherapy is applied locally to the area. It is theorized that local application of the chemotherapy will help to avoid systemic side effects caused from chemotherapy. By applying the chemotherapy locally to the mesothelioma tumor, it is hoped the tumor will shrink and alleviate some of the pain and symptoms of mesothelioma. Some of the symptoms that it hopes to improve are shortness of breath and pain, thus improving the quality of life for mesothelioma patients.

It is confusing to realize how many different ways that chemotherapy can be administered. Chemotherapy is commonly given by mouth, or by catheter that has been placed into a vein. Another procedure that is currently being used for other cancers is called trans arterial chemo embolization or TACE. A doctor, most commonly a trained Interventional Radiologist, inserts a catheter into usually a large blood vessel in the patient’s groin and feeds it up through the arterial system. This procedure involves first installing the chemo through the catheter and then inserting tiny beads toward the tumor that then block the blood supply and nutrients. Another way of administering chemotherapy is during surgery for certain conditions. Chemotherapy is heated and washes the area after removal of all the tumor that is visible to the surgeon’s eye. Intra op heated chemotherapy has been administered for peritoneal mesothelioma and for pleural mesothelioma and other cancers.

The Moffitt Trial is the first one with this therapy being conducted in the United States for pleural mesothelioma. A previous clinical trial of patients with pleural mesothelioma and chemo perfusion has taken place in Germany – published in the Journal of Radiology in February of 2013, Non Selective Trans arterial Chemo perfusion: A Palliative Treatment for Malignant Pleural Mesothelioma, by TJ Vogl et al. The purpose of this clinical trial was to evaluate tumor response and alleviation of patient’s symptoms after treatment. The conclusion of this trial was that chemo perfusion has the potential to yield positive results for the treatment of recurrent and or unrespectable pleural mesothelioma.

Become informed about the treatment options that might be available for you or your loved one. Clinical Trials often offer an option that is not yet available.

– Ellie

The Power of Positive Thinking for Mesothelioma Patients

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think positive mesotheliomaYou hear the expression all the time, “think positive”. What does that mean? What if you don’t usually “think positive”? Is there any scientific basis for this? Can you learn to “think positive”?

Mesothelioma patients and their caregivers are told from diagnosis to “think positive” about their disease and treatment options. Looking at the statistics for malignant mesothelioma it is very difficult to “think positive”.

Historically it has been thought by many people that positive thinking is healthy and can improve your quality of life. The qualities of optimism and pessimism have a marked influence on your psychological and physical well-being.

“The pessimist sees difficulty in every opportunity. The optimist sees the opportunity in every difficulty.” — Winston Churchill

In 1985 the psychologist, Michael F. Scheier and co-author Charles S. Carver published a landmark study, “Optimism, Coping, and Health: Assessment and Implications of Generalized Outcome Expectancies”. This paper helped bridge the gap between psychology and biology. The study included a test to measure the effect of a personality variable on a person’s physical health. By developing a tool that was simple and easy to use, scientists were then able to measure what was thought of “the power of positive thinking”. As a result of this work and many after this publication, there is now scientific proof of the positive benefits of positive thinking on your health.

To start on the path to positive thinking look at yourself and what goes on in your head. Self-talk is that stream of thought that goes through your head that is not spoken. These thoughts can be positive or negative. Some of the thoughts may be logical, others can be from lack of information, and misconceptions. If you find that the unspoken thoughts that you are saying to yourself are negative, you can change that with time and practice. Be nice to yourself and encouraging. Give yourself a break! Look at the thought and evaluate it and remind yourself what is good about yourself!

Increasing positive thinking in your life can be done by figuring out what makes you happy. Spending time with people who you enjoy – such as your children or grandchildren — or doing a hobby that you enjoy. These could all be ways to increase positive emotions. Recent studies have proven that meditation has a positive effect. People that meditate daily have more positive emotions than those who do not. Writing has also shown to help. A study was published that showed that writing about one positive experience a day had a lasting effect on moods, and results in fewer visits to health centers, as well as better overall health. Exercise has also proven to help, as has allowing yourself time to explore something new and having fun.

Optimism and pessimism are personality traits. Positive thinking comes from optimism and then is used effectively in stress management. By thinking positive it does not mean that you deny reality. Mesothelioma is a deadly cancer, to take the approach that you are going to “think positive” and all will be well is not realistic. Positive thinking means that you approach the challenge of a mesothelioma diagnosis in an optimistic and constructive way.
There are ways to become a positive thinking person. Look at a situation that did not turn out as well as you expected and ask yourself: “what have I learned from this”? Change does not happen overnight but it is possible. Positive thinking will only aid you and your family members along the journey with mesothelioma.

– Ellie

Reflections on National Asbestos Awareness Week

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As National Asbestos Awareness Week comes to a close we are left with a few points to reflect on.  Groups shared their knowledge, and patients and survivors shared their hopes and dreams, as experts weighed in on the possibilities in the future, and to remind us that asbestos containing products are still in use today.  Although mesothelioma is considered a rare disease, it is deadly. The world needs to be reminded that there is no ban on asbestos in the United States.  The U.S. Surgeon General, Dr. Vivek H. Murthy, issued a statement reminding the nation of the dangers of asbestos. The use of this naturally occurring mineral was so widespread that it was used in the construction of many homes.  According to the World Health Organization there are 125 million people that have been exposed to asbestos. Dr. Vivek H. Murthy, the Surgeon General, strongly urged that if an individual has concerns about being exposed to asbestos that they reach out to a health care professional. The U.S. Center for Disease Control and Prevention estimates that at least 10,000 people die each year from asbestos-related diseases.

A conference was held in the Washington D.C. area by the Asbestos Disease Awareness Organization (“ADAO”).  There were many speakers and many powerful messages. A couple of important points were: ”Everyone has a voice“ and “We are one”.  A survivor of pleural mesothelioma, Heather Von St. James, spoke about sharing your story and that everyone has one. Although you may think that no one wants to hear your story, you might be surprised about the impact you can make on others dealing with mesothelioma. Sometimes it may just help you to speak and say out loud what has happened to you and your family.  Ms. St. James encouraged all to call their representatives and spread the word about banning asbestos. Doing this simple thing could possibly make a difference and raise the level of awareness about this important issue to our elected officials.

The other aspect of the conference that caught my attention was their slogan: “We are one”. This slogan captures the necessity of all working together towards a cure.  Professionals, healthcare workers, patients and caregivers all share the common goal of improving the quality of life for patients and families as they fight this disease.

Dr. Raphael Bueno, the Director of the International Mesothelioma Program at the Brigham and Women’s Hospital, Boston MA, spoke about mesothelioma during a conference call. He suggested that we need to collaborate with our researchers, doctors and patients to fight this disease. He believes there are drugs out there that will be proven successful in combating this disease. The more information we share the more powerful we can become against mesothelioma.

As we mark the end of the National Asbestos Awareness Week 2016, we encourage everyone to remain active to raise our voices collectively to ban asbestos, and to support the victims of asbestos diseases across the country and the world.

– Ellie Ericson

 

Raising Awareness About Asbestos & Mesothelioma

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asbestos mesotheliomaThe leading cause of mesothelioma is exposure to the mineral known as asbestos.  Asbestos is a naturally occurring product that for centuries was used as a fire retardant, insulating product, used in boilers, and in the manufacturing of many products.  These products can be found in the home and workplace.

Global Asbestos Awareness Week is April 1st – 7th, 2016.  Asbestos is still imported into the United States.  Last year an estimated 4 million metric tons were imported.  Asbestos is a known human carcinogen.  Asbestos related diseases caused an estimated 300 deaths a day around the world.

According to the World Health Organization:

  1. All forms of asbestos are carcinogenic to humans
  2. Exposure to asbestos causes cancer of the lung, larynx and ovaries, and also mesothelioma.  Asbestos exposure is also responsible for other diseases such as asbestosis, plaques, thickening and effusion in the pleura.
  3. Currently about 125 million people in the world are exposed to asbestos in the workplace.
  4. According to the most recent WHO estimates, more than 107,000 people die each year from asbestos related lung cancer, mesothelioma and asbestosis resulting from exposure at work.
  5. Approximately half the deaths from occupational cancer are estimated to be caused by asbestos.
  6. All the asbestos imported into the United States comes from Brazil.  Russia is the largest producer of asbestos. China is second and Brazil is third.
  7. The users of asbestos in the United States are the chlorine- alkali industry, used in making of chlorine and sodium hydroxide, accounting for around 57% of the mineral.  The remaining approximately 41% is used in roofing products.
  8. Only 52 countries have banned asbestos- the United States is NOT one of them.
  9. Co-exposure to tobacco smoke and asbestos fibers substantially increase the risk for lung cancer- and the heavier the smoking the greater the risk.
  10. The countries that are the largest consumers of asbestos  products are Russia, China, India and Brazil.

Source :  World Health Organization- www.who.int/mediacentre/factsheets and www.allgov.com

In the United States the organization that is dedicated to being the voice of the asbestos victim is the Asbestos Disease Awareness Organization- ADAO-.  ADAO is a non-profit that is dedicated to preventing and eliminating asbestos- caused diseases.  Linda Reinstein is the founder of ADAO.  Linda lost her husband to mesothelioma. During this week ADAO has scheduled activities to increase awareness and knowledge of asbestos in 2016.  www.asbestosdiseaseawareness.org

Victims of mesothelioma and their families know first hand what the devastating effect of asbestos exposure can do to the health of their loved one.  This week spread awareness to the dangers of Asbestos.

Eleanor B. Ericson, RN

Caregivers and Caregivers Health

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post-thumbnailCaregivers and caregivers health is a major issue in taking care of mesothelioma victims. Overall, the figures are staggering regarding the effects on caregivers’ health short-term and in some cases long- term. Their physical, mental and emotional health can be affected for years.

Becoming a caregiver is not something that comes naturally to everyone. The timing in the caregiver’s life might not be optimal. Over the years we have seen people who could never have imagined themselves as caregivers do an outstanding job caring for their loved ones. One patient in particular had a rocky course, his wife was his caregiver. After a long difficult hospitalization and rehab stay, they went home. Three months later, walking down the corridor in the hospital they spotted me. I recognized him immediately- he looked well, said he felt well and was doing better than he could have imagined. His wife had lost weight, looked tired, and had aged since the hospitalization and recovery. It was clear when talking with them that she had given her all for her husband to get better, but had not taken care of herself. What would help her cope with being a caregiver? What resources are available?

One of the most important things that a caregiver needs to know is that they are not alone. Help and support are available. It is not a sign of weakness that you take care of yourself. According to the web site Family Caregiver Alliance- www.caregiver.org – “Caregiving can also result in feeling a loss of self identity, lower levels of self-esteem, constant worry, or feelings of uncertainty. Caregivers have less self-acceptance and feel less effective and less in control of their lives than non-caregivers.”

There are many positive benefits of being a caretaker. Caregivers need to realize that this is not something that one person can do effectively over the long-term, without support and taking time for themselves.

A suggestion for a caregiver who is feeling alone or needs some support is to reach out. Support groups are available online. Sometimes just having a place to communicate with others who are going through similar experiences is helpful. When friends and family offer to help, take them up on their offer and give yourself a break. Remember that you need to be healthy and strong physically and emotionally to continue to take the best care of your loved one.

– Ellie Ericson

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Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.

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