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Go For A Walk: Benefits for Mesothelioma Patients and Others

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In this day and age of high tech personalized medicine, there are still some simple tasks that we all can do, if able, to improve our overall health. When you are dealt a diagnosis of malignant mesothelioma there is one thing that everyone can benefit from doing every day – walking. No matter what stage your cancer is, what cell type or course of treatment that you elect, walking everyday has proven health benefits. Walking can ease the recovery after surgery, contribute to the use of less pain medication and allow you to potentially be released from the hospital earlier.

How does walking have such positive benefits? As noted in http://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/walking/art-20046261 walking can help maintain a healthy weight, prevent or manage various conditions, including heart disease, high blood pressure and type 2 diabetes, strengthen your bones and muscles, improve your mood and improve your balance and coordination.

In 2015, research was presented at the European Society of Cardiology Congress, that walking may slow down the aging process and that exercise buys you three to seven additional years of life. It can act as an antidepressant, improves cognitive function, and there is new evidence that it may retard the onset of dementia.

One study found that walking for two miles a day or more can cut your chances of hospitalization from a severe episode of chronic obstructive pulmonary disease (COPD) by about half.

Another study found that daily walking reduced the risk of stroke in men over age 60. Walking for at least an hour or two could cut a man’s stroke risk by as much as one-third, and it didn’t matter how brisk the pace was.

Walking triggers your body to release natural pain-killing endorphins, and the more steps people take during a day, the better their mood tends to be.

Walking daily around 10,000 steps or more is good, if you can do it out in the sunshine and barefoot for grounding it is better. In an article published online in March of 2015, ‘The effects of grounding (earthing) on inflammation, the immune response, wound healing, and prevention and treatment of chronic inflammatory and autoimmune diseases are remarkable.”(www.ncbi.nlm.nih.gov/pmc/articles/PMC4378297/) Grounding is defined as direct skin contact with the surface of the Earth, such as with bare feet or hands, or with various grounding systems. This research investigated the effects of walking on inflammation and concluded that grounding can be a simple, natural, and accessible health strategy against chronic inflammation.

Established in 1996, America Walks, is an organization which is trying to make America a great place to walk, by providing a voice for walking and walkable communities with federal agencies.

Walking is easy, free, and available for everyone. Dr. Thomas Frieden, director of the Centers for Disease Control and Prevention is quoted as saying walking is “the closest thing we have to a wonder drug.”

The Harvard Health Publication of Harvard Medical School recently published the 5 surprising benefits of walking. Walking counteracts the effects of weight-promoting genes, helps tame a sweet tooth, reduces the risk of developing breast cancer, helps to ease joint pain and boosts immune function.

The benefits of walking are many, take advantage of them!

– Ellie

Reaching Out In Response to a Mesothelioma Diagnosis

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When someone is diagnosed with mesothelioma or any serious illness, it is not unusual that family and friends do not know what to say or how to acknowledge what is going on. Once diagnosed with mesothelioma, hopefully the patient’s friends and family will rally around them.

Some people, with the best intentions, will tell you it will be Ok. Some will offer their opinion on chemotherapy, and how they feel it is just “poison”. The intentions are good, the delivery and message can be distressing to the patient and family to hear. There are also the group of people upon hearing the news, that disappear and you do not hear from them. It can be surprising that some that you thought would be with you are not. For your own health, try not to dwell on the ones that cannot handle your diagnosis.

To be helpful, according to www.cancer.org , take your cues from the person with cancer, some will want to talk about their illness, others prefer privacy. Let them know you care. Respect their treatment decisions. Listen without always feeling that you need to respond. Offer to help in concrete, specific ways. The advice continues about what not to say. Don’t offer advice they don’t ask for, or be judgmental. Avoid being patronizing, or telling the person with cancer “I can imagine how you feel.”

During you or your loved one’s journey with mesothelioma, you might discover that you have formed new relationships. Sometimes the people who surround you at your darkest moments may be not the ones you expected to be there. We have seen bonds form between people that they were even surprised about. Two women from totally different walks of life and completely opposite interests had formed a tight bond, so much so, that they made their husbands appointments on the same day so they could support each other. For these patients and families this was the positive that they were taking from the diagnosis of mesothelioma. For some, these are reassuring positive relationships, for others it might be too much to handle.

If someone you know is diagnosed with a serious illness, reach out. Listen instead of talking. Expect the person to have good days as well as bad days. Cancer is an equalizer. It reminds us all that our time on this earth is limited, make the most of it, and reach out to others who are having a rough time.

– Ellie

Cancer Immunotherapy and PD-L1

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Different medical terms are used in defining other medical terms. When advertisements on the television for new immunotherapy drugs say that in order for the new drug to be effective the tumor must “express PD-L1”, what are they talking about? Although the words are long and foreign the new classification of therapy and its results are exciting for all patients and families.

To review, the immune system as defined on www.cancer.gov:

“A complex network of cells, tissues, organs, and the substances they make that helps the body fight infections and other diseases. The immune system includes white blood cells and organs and tissues of the lymph system, such as the thymus, spleen, tonsils, lymph nodes, lymph vessels, and bone marrow.”

It is long known that the immune system plays a vital role in keeping us healthy.   The way the immune system functions are to recognize and fight foreign invaders that will change the cell metabolism.

It was discovered over 100 years ago that somehow the immune cells allowed other infiltrates to produce cells that are undetected and cause disease. Why or how this happened was a mystery. What controlled the switch to allow this to happen? In the 1990’s the breakthrough discovery by scientists that human cells carry certain proteins on their surface that enable them to escape attack from the body’s immune system. This led to the discovery in 2000 by scientists at Dana Farber Cancer Institute in Boston. The scientist credited with its discovery is Gordon Freeman PhD and his associates. What Dr. Freeman discovered is that the protein PD-L1 (programmed cell death 1 ligand 1) was on normal cells. Their research discovered that PD-L1 binds to the T cells co-receptor PD-1 as a result the T cell does not start the immune system from attacking. In 2001 Dr. Freeman and his associates published that PD-L1 appears not only on some normal cells but on certain cancer cells as well. From that it was thought that the agent that blocks PD-L1(or a related ligand PD-L2) could release the brakes on the immune system and attack the cancer. From these discoveries, pharmaceutical companies started to look at drugs that could block PD-1, PD-L1, or PD-L2. The drugs that block these and other proteins are known as immune checkpoint inhibitors.

The definition for immune checkpoint inhibitor, according to www.cancer.gov:

“A type of drug that blocks certain proteins made by some types of immune cells, such as T cells, and some cancer cells. These proteins help keep immune responses in check and can keep T cells from killing cancer cells. When these proteins are blocked, the “brakes” on the immune system are released and T cells can kill cancer cells better. Examples of checkpoint proteins found on T cells or cancer cells include PD-1/PD-L1 and CTLA-4/B7-1/B7-2. Some immune checkpoint inhibitors are used to treat cancer.”

Our immune system is comprised of many cells including T cells. T cells help fight off diseases like cancer. On the surface of the T cells are certain proteins known as programmed cell death receptors, or called PD-1. The cancer cells can escape T cells by expressing a protein called PD-L1. This protein activates t cells. PD-L1 attach to T cell receptors called PD-1. The scientists have theorized if we could prevent the cancer cells from expressing PD-L1 we could treat the cancers that express this gene.

The goal of cancer immunotherapy is to increase the immune systems response to cancer. Targeting PD-L1 is very important in cancer research. Cancer immunogenicity is the ability of a tumor to start an immune response. The more mutations a tumor has, the higher the chance that tumor antigens can trigger the immune response.

The drugs that are targeted as PD-1 inhibitors are Pembrolizumab (keytruda) or Nivolumab (Opdivo). Currently these drugs have had positive effects on certain types of cancers: Melanoma of the skin, non-small cell lung cancer, kidney cancer, bladder cancer, head and neck cancers, and Hodgkin lymphoma.

PD-L1 inhibitors include Atezolizumab (Tecentriq) and Avelumab (Bavencio). These drugs have been used to treat bladder cancer, non-small cell lung cancer, and Merkel cell skin cancer (Merkel cell carcinoma).

For patients with malignant mesothelioma there are currently clinical trials available with immunotherapy. In the Mesothelioma Clinical Trial Digest, you can find listings of the sites and the drugs they are trialing.

So, the next time that you hear the cancer must express PD-L1 to be eligible for a certain medication, this is what PD-L1 is.

– Ellie

Handling Challenges on Your Mesothelioma Journey

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When challenges happen in life it can change our life’s plan. How we handle those challenges often can define your life for better or worse. “Challenges are what make life interesting and overcoming then is what makes life meaningful,” Joshua J. Marine.

For patients diagnosed with mesothelioma the way they handle the diagnosis and the reality that the remainder of their time on earth can be limited, can be a challenge. Like all of us, we know on an intellectual level that we are all going to die, but to face death and dying and make choices on the way we want to live out our final days, can require support and courage. Sometimes, and hopefully all the time, support can be found with family, friends, community and your medical team.

Medicine has recognized that there is a need for specialists to look at the big picture in a patient’s treatment. What is important to the patient? How are the symptoms of their disease affecting the way they live? Palliative care specialists are focused on what is important to the patient, not just in the context of their disease but in the context of their lives.

In the January 3rd, 2017 edition of the New York Times there is an article by Jon Moolallem about B.J. Miller a doctor who also is a triple amputee. The article is about Dr. Miller who is a pain and palliative care specialist, in a part of the article he tells the story of the tragic death of a young mesothelioma patient at the Zen Hospice in San Francisco. The back story of Dr. Miller’s life is woven into the story of how he became a physician, how he handled his accident in college, and his philosophy on living and on how we die. Palliative care focus is on relieving symptoms so that you can lead the best possible life. The article is well-written and worth reading.

The story of the death of Randy Sloan from mesothelioma at the age of 27 at the Zen Hospice is inspiring. By chance Dr. Miller and Randy knew each other as Randy had worked at a motorcycle shop and had worked on specializing a motorcycle for Dr. Miller a year before he was diagnosed with mesothelioma. Randy’s journey with mesothelioma was quick and devastating. He had an aggressive course that robbed him of his life very quickly. Through the Zen Hospice, Dr. Miller, his family, Randy’s death was on his terms. One of the things that Randy wanted to experience was having an ordinary day. A day he did not have to think about chemo, sickness, he was sick of being sick. Dr. Miller explained that the hospice house he ran was the best chance of living out his life the way he wanted to. Although the patient Randy was uneasy he did move in 5 days after his conversation with Dr. MIller. As he got comfortable his friends could be his friends, his mom could be his mom and he could live the way he wanted to.

How one person faced a challenge- his accident and amputations, became a doctor and continues to help other people face their challenges is inspiring. By allowing someone to face death the way they want, on their terms, he has made a difference.

However long a patient’s journey is with mesothelioma or any other disease, palliative care specialists remind all that it is the patient’s choice what treatment he undergoes and when he has had enough.

– Ellie

Mesothelioma Patient Care: Behind The Scenes

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Every successful team needs people that work behind the scenes. In sports, it could be the trainer or the statistician, the person who does the scheduling, or the people in charge of the uniforms. Whatever the job it is necessary to keep the organization moving forward and progressing.

In the mesothelioma community, there are many people behind the scenes. Many people are trying to make a difference for the patients, families, caregivers and friends that have been affected by mesothelioma. Often the importance of their work is not recognized.

Recently when talking to a patient advocate we were reminded about how difficult it is to navigate the health care system on a regular basis and how difficult it can be when you are dealing with mesothelioma. A question about insurance coverage came up for one of the patients. They could not afford one of their prescriptions. The prescription was necessary for their recovery. After multiple phone calls and some arm twisting she developed a plan and could get the medication that the patient needed.

A researcher that we regularly see always asks about the patients. He asks because we can help him put a face to the stories about the patients. He usually does not meet the patients, his passion is research, but the stories are inspirational to him to know. He can make the connection that the work he is doing is making a difference.

A radiologist does his job during the day and during the evenings works on a clinical trial for mesothelioma. The disease is a personal interest of his. He knows that today’s research that is being conducted is hope for tomorrow’s cure.

The intake coordinator at the hospital is often the point of first contact for patients and families. A patient this week told me a story of how he was diagnosed with a life-threatening cancer and told that without treatment he had 3-6 months to live. The first appointment he could get with his local oncologist was 3 weeks from the day he was told his devastating diagnosis. Three weeks to someone who was just told he has 3-6 months and was in considerable pain is a lifetime. He made a few calls, he could navigate the system, and was seen the next day by an oncologist and a pain MD. Once in the MD’s office he was admitted to the hospital for workup and pain control. He now has a plan.

There are countless stories of people behind the scenes working tirelessly to make the patient and families experience better.

For mesothelioma patients and families please reach out there is a community surrounding you and many more behind the scenes that want to help.

– Ellie

Asking the Mesothelioma Patient: What do You Want to Do?

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One of the leading physicians in treating patients with mesothelioma always includes in his first interactions with patients a simple important question to his patients. “What do you want to do?’ It is a non-judgmental question acknowledging the patient has his own thoughts, feelings, and that most importantly the patient oversees what if any treatment choices he makes. This might seem like something that is assumed, a patient seeks out an expert in the field of mesothelioma, he may have traveled a great distance, has a support system that is urging him to do everything he can to stay alive, but he is not sure that the treatment plan is something he wants to go through.

The other day at a conference with two patients and their families that have been recently diagnosed with malignant pleural mesothelioma, two questions came to mind. What do you want to do? What is important to you? Two patients, two spouses, supportive adult children, a roomful of people, including social workers, medical experts, chaplaincy, all talked except the two patients. At the conference, it is a lot of information to absorb, a lot of statistics and different possible scenarios that could happen to the patient. Well-intentioned family members asked lots of questions. All of them were trying their best to find a path for their loved one’s journey with mesothelioma. The two patients sat silent no questions, no visible reactions.

These two patients and their families were just starting on their journey with mesothelioma. The treatment options that are recommended to them are specific to them. Hopefully both will have a long journey with mesothelioma, with a great quality of life during the remainder of their lives. If things do not go well, their families and the team taking care of them will know that the patient was asked two important questions before proceeding with their treatments. “What do you want to do?” “What is important to you?”

The bottom line is that this journey is yours, the patient with mesothelioma. You must make the decisions on how you want, and how you choose, to live your life.

– Ellie

Coping With Mesothelioma During the Holidays

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As we approach the holidays for many people who have been diagnosed with mesothelioma or their family members, it is difficult if not impossible to “be of good cheer.”   The constant reminders of past happy holiday seasons and the uncertainty of how future holiday seasons will be affected weighs heavy on the patient and the family.

A few weeks ago, a mesothelioma patient who had been diagnosed two years ago died suddenly after contracting what was thought to be pneumonia. The timing of his death surprised his family as they had been used to him living fully with mesothelioma for the past two years. His death the week before Thanksgiving left a void that could not be filled and having the holidays approaching has left the family reeling. Dealing with the grief accompanying their loss and at the same time, the time set aside for reflecting and giving thanks, seemed overwhelming when we texted back and forth.

There is no wrong or right way to grieve. The first holiday season after a loss is going to be difficult, prepare yourself for that reality. One of the most important things to remember, as much as you might want to “cancel the holiday,” isolating yourself does not allow you the opportunity of creating a new tradition with others. Creating a new tradition might be the last thing on your mind and you might not feel that it is appropriate, but some people find comfort in changing traditions. Allowing yourself time to grieve during this time of year, to feel joy, anger, overwhelming sadness, while surrounding yourself with people that love and support you can be helpful. Taking care of yourself, exercising, and not drinking too much is also recommended.

Our patient’s family successfully made it through Thanksgiving. Acknowledging that this experience was different and difficult they also found strength in the support they found with each other. They are now planning how they will chart the upcoming Christmas Holiday season.

Two books that deal with this topic are: James Miller: How Will I Get Through The Holidays? Twelve Ideas for Those Whose Loved One Has Died.

Drs. Clarence Tucker and Cliff Davis: Holiday Blues- A Self Help Manual on Grief Through The Holidays

For family and friends trying to support someone during this difficult time, often acknowledging that it is a difficult time and reaching out and listening, is better than any gift you might buy. Our patient’s wife communicates best through texting; ask what way your family and friend are most comfortable communicating with and reach out.

– Ellie

The Strength of the Mesothelioma Community

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For some patients and families being diagnosed with mesothelioma brings them in contact with other people that they would never had met before, have little in common with, live nowhere near each other, are from totally different socioeconomic backgrounds. These relationships can be some of the most comforting for both the patients diagnosed with mesothelioma, and their families.

Recently while seeing a patient at a hospitality house near the hospital, one of the patients needed immediate medical assistance. After calling for an ambulance the patient was transported to the Emergency Room for treatment. The family was being supported by another mesothelioma patient and his family that they had become friendly with. Talking to the mesothelioma patient that was at the house after the other had gone to the E.R., the concern for the other patient was paramount. He and his family were quietly reflecting on the events, how worried they were about the other patient and his family. They were sharing stories of how they had met and how close they had become over the past few weeks. There was a bond between the families as well as the patients.

The sense of community is a powerful one in the small mesothelioma community. To be diagnosed with a rare cancer, seek treatment, and live with this cancer, requires support. Often the support comes from other patients and families. These bonds between people unite them in a way that is deep and meaningful.

As we enter the Holiday season in 2016, we are reminded in many different ways, that what unites us can be as simple and important as concern for others. Mesothelioma is a cancer for which there is no cure-yet. It can also remind us about how truly important our relationships are, as we give thanks this year.

– Ellie

Libby Montana: How an Idyllic Town Became the Home of An Asbestos Disease Epidemic

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Libby Montana Asbestos MesotheliomaThere is a beautiful place in Montana in the northwestern area named Libby. The description from the City of Libby web site speaks for itself. ” Libby Montana, is a uniquely located town in northwestern Montana where the Cabinet Mountains meet the Kootenai River. Surrounded by the public lands of the Kootenai National Forest, Libby offers pristine lakes, rivers and mountain trails unencumbered by the crowds of people you would encounter anywhere in the lower 48 states. Down hill skiing options are some of the most varied in all the Northern Rockies with four to choose from in a less than 2- hour drive. Nordic skiers can explore the solitude of the back country or enjoy groomed trails with evening skiing. Rivers and streams are filled with native fish that reproduce freely and don’t need to be restocked. Local guides float the Kootenai with fly fisherman from all over the world. Hiking trails include 1400 miles of moderate to strenuous hikes that follow huckleberry laden hills to breathtaking views of the Cabinet peaks.”   The description goes on to describe an idyllic place for all seasons.

The Environmental Protection Agency –EPA- is charged with protecting the health of people as well as the environment, air, water and land. Together with local agencies they assess, evaluate an area then act. Sites can be declared Super Fund sites that designate them for cleanup. Since the beginning of this process there has been one site that conditions have deemed it be designated as a public health emergency. On June 17th 2009, the director of the EPA determined that conditions at the Libby Asbestos site constitute a public health emergency the first and only Public Health emergency from an environmental disaster.

The idyllic place in northwestern Montana was poisoning the residents. For decades in the mountains and hills of Libby the residents made a living working at the mining operations of asbestos initially for the Zonolite Company. In 1963 W.R. Grace purchased the mining operation and greatly increased production. Production did not stop until 1990. While the mine was operating it is estimated that it produced about 80% of the world’s supply of vermiculite. Vermiculate was used in building insulation and as a soil fertilizer. The vermiculite from the Libby mine was contaminated with a toxic form of naturally occurring asbestos called tremolite-actinolite series asbestos.

The human suffering that the people of Libby have endured continues today. In 2000 the population of Libby was 4,500 people, at that time, nearly one-third of the population, some as young as 10 years old had developed asbestos related diseases from exposure to tremolites- contaminated vermiculites. Doctor Brad Black came to Libby in 1977 as a Pediatrician.   He has been a supporter of his neighbors and an advocate for continued specialized health care for the citizens of Libby. In 2000 he and fellow concerned citizens, formed the Center for Asbestos Related Disease Foundation- CARD. The work of the foundation includes research and treatment of the citizens of Libby. CARD and Dr. Black are an integral part of the Libby Epidemiology Research Program that is being conducted in conjunction with the Icahn School of Medicine at Mount Sinai New York.

There are 3 books that detail the tragedy of Libby: Fatal Deception The Terrifying True Story of How Asbestos is Killing America- Michael Bowker, Wasting Libby, The True Story of How the WR Grace Corporation Left a Montana Town to Die, Andrea Peacock: An Air That Kills- How the Asbestos Poisoning of Libby Montana, Uncovered a National Scandal, Andrew Schneider.

The period between exposure to asbestos and symptoms of mesothelioma can be anywhere from 15 to 50 years. The amount of exposure and when the exposure happened are all being studied.

Libby Montana continues to be de-contaminated by the EPA. Residents continue to be diagnosed with asbestos related diseases at the CARD clinic. Research continues, patients are being followed and cared for, and asbestos continues to be legal in the United States.

– Ellie

Acupuncture Therapy for Mesothelioma

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When trying to deal with a diagnosis of mesothelioma patients often combine therapies. In addition to standard therapy, chemotherapy, surgery and radiation, patients often find relief in Complimentary Alternative Therapies –CAM, used together it is called Integrative Therapy. There are many different therapies under this group, one being acupuncture.

According to www.cancer.gov acupressure is defined as, “the application of stimulation such as needling, moxibustion, cupping and acupressure on specific sites of the body known as acupuncture sites.”

Acupuncture is a form of ancient Chinese medicine, which uses fine needles to specific areas of the body or acupoints to stimulate energy flow. This energy is known as chi. The needles are often left in the body for approximately 30 minutes. Usually this causes virtually no pain. It is not known exactly how acupuncture works but it thought to be effective by stimulating healthy energy flow, regaining balance. Acupuncture has been practiced in the United States for a very long time. However the United States Food and Drug Administration first approved acupuncture needles as a medical device in 1996.

Research has indicated that acupuncture is most effective in cancer patients in treating the nausea and vomiting associated with chemotherapy, and is also helpful for pain management, fatigue, control of hot-flashes, neuropathy, anxiety, depression and sleep disturbances. In recent years many major medical centers have formed departments of Integrative Therapies and acceptance of these therapies has increased.

To become a licensed acupuncturist in the United States there are approximately 50 schools whose course of study is acupuncture and oriental medicine. It takes from 3-4 years to complete. Every state has its own licensing requirements and some require that the acupuncturist practice under a medical doctor.

If acupuncture is something that you want to learn more about information is available on   www.cancer.gov.   Remember to do your due diligence in researching any practitioner and also ask your mesothelioma care team for any recommendations.

– Ellie

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