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Posts by: Lisa

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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.

Blogging About Mesothelioma

It is now 2018 and as years pass, medical information about Mesothelioma is becoming more easily accessible to the public. Like anything, some websites are more reliable than others and it is unfortunately up to you to weed out the ones that carry more validity. Websites that are most accurate are written from people who are currently and actively caring for patients who have Mesothelioma. With that said, there is not that much available on these websites about emotions. Emotions are a huge part of the disease and recovery.

As we write blogs, frequently they are based on patient’s experience and medical experience. Following blogs like this one can allow you to read and inform yourself at your own pace. Many patient’s blog their own experience whether it be how their diagnosis was initiated, how they are handling chemotherapy, side effects from drugs or other issues. This can help with building a community of support. Despite Mesothelioma being a rare disease, the emotions and feelings are far from uncommon. Often this can help if you are feeling alone, scared or depressed. No one knows better than a fellow Mesothelioma patient. Your loved ones are doing everything for you but it is not the same as speaking with another person experiencing what you are enduring.

Some patients get through their journey by keeping a journal of their thoughts and emotions. Some people do it just for themselves and others have people follow them. Whatever the reason you choose, whether your thoughts become public or private it may just help you or someone else.

Many patients with different types of cancer blog as well. You don’t have to strictly follow Mesothelioma patients. Think about who and what you choose to follow as a guide. Take what you like and leave the rest behind.

Whenever one starts or stops blogging it is usually for a reason. Often it is the easiest way to keep family and friends involved about the person’s progress. It allows patients to say it once and not have to field numerous phone calls or say things numerous times. Caring Bridge is a familiar web site to many where daily journaling can be formulated and readers can post their love and concern for you.

We all know what kind of illness this is and how much it can take out of you and your family. Like most illnesses, it can be mentally draining. If you try one of these tactics possibly it will give you some mental relief.

– Lisa

Mesothelioma Recovery

Recovery is often a long process that requires a lot of patience in order to beat mesothelioma. For many patients and their loved ones, the rate of recovery can be lengthened if they focus on issues that prolong progress rather than the obstacles they have already overcome. Often times patients become fixated on similar challenges time and time again.

One challenging and frequently seen obstacle is a chest tube leak. During surgery, a chest tube is placed on the operative side where the disease was. This chest tube helps the lung re-inflate until the lung can function independently. It is closely monitored by x-rays and a device that shows whether there is a still a leak. In order to treat and overcome a chest tube leak, ambulation is used as it is very important to help the lung re-inflate. Unfortunately, the treatment must take its time.

Another obstacle that patients sometimes focus on too often is oxygen saturation. Usually a patient is preferred to have an oxygen saturation level above 92 percent. As this number is easy to understand, families and patients often focus on it. In addition to oxygen saturation, drainage from a device and the amount it outputs can also be focused on too much.

Although there are some obstacles that patients should not stress heavily about, the number on the scale is actually very important. A patient’s weight tells whether they are losing weight because their caloric intake is not where it should be or possibly they are retaining fluid and may need fluid restriction or a diuretic. The number on the scale can also be an indication for how well the patient is breathing

If a patient is staying in the hospital, often people will become focused on lab work. For example, maybe an elevated white count could indicate infection. If the white blood count is at a dangerous level, it could indicate that the patient is very susceptible to infection, otherwise known as immunocompromised. This can happen to a patient if they are receiving chemotherapy as there are many adverse reactions related to the drug. Additionally, another issue that patients quickly focus on is urine output as it is again another area that is easily understandable. Certain amounts per hour are expected and we monitor lab values that also reflect the work of the kidney. If the output is too low, often patients are easily upset.

It is wonderful to see patients and loved ones engaged in the overall health of the Mesothelioma patient. Lab values, chest x rays, weights, and shortness of breath are all very important in the overall health of a patient. Often times, patients, loved ones and medical professionals can get so hyper-focused on the patient’s abnormal issues that they forget to look at the patient and their successes. Before you become overwhelmed and start letting your mind go places it does not need to, remember before all else, look at your loved one. Ask yourself are they in distress? Are they uncomfortable? Certainly, if there is something that needs medical attention, reach out to someone. If you are unsure and your gut tells you to get help, then do so. The worse thing that can happen is nothing. No one is going to fault you for trying to be on your game.

– Lisa

New FDA Drug Approved

We all know how important clinical trials are. The FDA has approved Yescarta (axicabtagene ciloleucel) Although this is not directly affecting Mesothelioma yet, we believe there is hope. Yescarta is the newest treatment for adult patients with certain types of large B- cell lymphomas whose first line treatments have failed, or relapsed. This is the second gene therapy approved by the FDA. This approval came after a multicenter clinical trial of more than 100 adults who had relapsed or did not respond to initial treatment for large B cell lymphoma.

Yescarta is an immunotherapy that engineers a patient’s T cells to target the protein that expresses cancerous B cells. Once it targets the cancerous cell the objective is to eliminate them. This approval is based on a clinical trial phase 2 ZUMA-1 in which 101 patients participated who had been diagnosed with non-Hodgkin’s lymphoma. A large number, roughly 82% of the patients responded to this treatment. Most encouraging is that 54% of their tumors disappeared completely after treatment. Roughly 30,000 people are diagnosed each year in the United States. Three out of five patients have lymphoma B cell type. Often patients do not respond to treatment or relapse shortly after transplant.

The FDA commissioner stated,” Today marks another milestone in the development of a whole new scientific paradigm for the treatment of serious diseases.” Many years ago, gene therapy was a hope and today it is now a promising concept to treating deadly cancers. In 12 months, the expectation is that there will be 70-90 centers offering this treatment.

The cost of the drug is very expensive, $373,000 per patient. Although pricey, this has offered patients who have not responded to therapy or had a relapse and believed they were out of options, one more hope.

Every drug that is on the market for care of patients once was in a clinical trial. Many patients become involved with clinical trials because they have no more options. Clinical trials offer the chance to try medications that are not available to the public. Also, some patients have a desire to help future cancer patients. Whatever the reason you choose to become involved- patients receive the highest standard of care. Today we thank the patients who have become involved with clinical trials. As Winston Churchill stated , “Success is not final, failure is not fatal, it is the courage to continue that counts.”

– Lisa

Ask the Questions

Mesothelioma is a disease that has no cure but has lots of treatment options. Unfortunately, those options can run out and comfort and quality of life is what we are left to focus on. That is not a bad thing but it is not what we had hoped for. Talking about dying is one of the most uncomfortable topics that I know of. Death is the last phase of life and we are all going to be faced with it. I recently received a phone call from a patient telling me that her loved one was weak, frail and she was not sure what to do. She thought if she took her to the hospital she possibly would not be able to come home again because she thought the end was near. Although her caregiver could not say that she thought she would die she said everything but that. We are so filled with fear when it comes to death. As we progress in our lives we know that we will all age and be faced with this transition.

I agreed that her mother sounded like she was in poor shape and she may not survive a hospitalization. To be honest I too never used the words dying either. The one thing I did suggest was that she talk to her Mom and see what she wanted. These discussions are difficult but in the end, it may give clarity as to what is important to her.

As a cancer diagnosis is given I am sure self-evaluation takes place. Even a scare of a cancer diagnosis can cause reflection. The question is what do you want for the rest of your life. Do you want to spend your time with loved ones at home or would you prefer to pass at an institution? There are no wrong or right answers, it is all what you want. The questions are very overwhelming. Sometimes the end of life is dominated by what is expected by a culture. This is a lot to think about and it can be overwhelming.

If a person can make some decisions prior to these moments it provides some sense of control. We have taken care of patients that are at the end of their lives and have gone as far as making their final resting arrangements. Some of these conversations are hard but with more discussion it allows understanding of what the sick person would like. Often when it is our loved ones we try to change the conversation, ignore the elephant in the room and pretend that the end is not coming. Please try to allow these conversations to be spoken and ask questions. This is the time to allow someone’s ending be the way they want.

– Lisa

Mesothelioma Five Wishes

Mesothelioma is difficult to deal with and the struggle can seem insurmountable. Although the journey can be daunting, this is your disease and your life that requires your effort to make it through. Recently I came across a patient who have used the “Five Wish Document”. This is a guide that directs patients to express a plan of care at the end of life. Whether you have Mesothelioma or other diseases it gives you control and a platform to tell people, including your family and medical team, what you would like.

Five Wishes is the first living will that speaks about your medical, emotional, personal, and spiritual needs. This legal document was written by the American Bar Associations’ Commission on Law and Aging and experts in end of life care. Five Wishes is available in 27 languages and is known as a “living will with a heart and soul”.

This document meets all the requirements for an advance directive in 42 states and the District of Columbia. This writing enables the patient to express their requests about who will make care decisions when they cannot. It also allows you to explain how comfortable you would like to be and how you would like to be treated. It finally allows you to decide how much you want your loved ones to know about your end of life care.

Although these documents seem quite direct, these questions require heavy thought and reflection. For example, picking a Health Care Agent is a difficult task included in the Five Wish Document. One should choose a person who can stand up and share what your wishes are. It is best to speak to this person so they are aware of what your choices and wishes would be in certain situations. Another wish allows you to explain what ‘Life Support” means to you by enabling you to explain what limits you would allow if you were unable to speak for yourself.

The next wishes are about how comfortable you would like to be and expresses how you would like to be treated. You may possibly want your hand held and to be treated with kindness and cheerfulness, instead of sadness. It allows you to explain whether you would like to die in your home. The final wish is difficult as it is about what you would like your loved ones to know.

As the Five Wish document is a legal document, one can trust in the fact that their wishes will be respected. Everyone should review this document and think about how and what we want in our end of life care.

– Lisa

Mesothelioma Centers of Excellence

Since the late 1990’s into the early 2000’s mesothelioma Centers of Excellence have been in existence. The centers offer experts in mesothelioma from many different disciplines. Since mesothelioma is a rare disease it is recommended that once diagnosed you or your loved one seek an opinion with the experts at one of the centers across the country.

Receiving a diagnosis of mesothelioma is life altering physically and emotionally. Recently I have been speaking with patients and seeing posts from patients and the one common denominator is that they have hope. Many people have come from a place where they have been told there is nothing to offer. The patients and families are told to get their affairs in order. There are physicians who still believe there is no hope for mesothelioma patients, some have very limited experience with mesothelioma patients. Hope is not in the equation.

The advantages of going to a mesothelioma center include possible treatment options. Recently I saw a patient who was deemed inoperable twice by two different physicians, and now is having a treatment plan formulated by his team, which will possibly include immunotherapy. He continues to have hope on his journey. Another patient who was inoperable 2 years ago is going to her native country for a visit, a visit that she has put off for 2 years due to her illness. Patients are pushing forward and not giving up despite what they had been initially told. There is no cure for mesothelioma, patients continue to die from this disease, but there are options to improve quality of life and physical symptoms.

Getting to a mesothelioma center, can be expensive. Some centers offer assistance and there are resources available to help defray the cost. A mesothelioma center is different from your local doctor’s or oncologist office. The center includes a team of professionals including surgeons, oncologists, pulmonologists, research doctors, radiologists, nurses, social workers and patient advocates. These professionals collaborate with each other on each case. Years of education and experience is the heart of the mesothelioma center. The professionals have a plan for each patient, based on the individuals stage of disease, functional status and overall health.

If you or your loved one is diagnosed with mesothelioma strongly consider going to a mesothelioma center. Your options might be different than you think!

– Lisa

Asbestos Exposure from Unexpected Sources

Exposure to asbestos during our lifetime can be a common occurrence. Depending on the house you grew up in, where your parents worked, what you did for a living, how your home was insulated, chances are you were exposed to asbestos. It is a known carcinogen, a naturally occurring mineral that has been used in products for centuries because of its fireproofing and insulating properties. Although the facts about asbestos exposure leading to illness have been known for decades, it continues to be used in products. Asbestos is not banned in the United States.

We know that asbestos is still used in certain industries. The most commonly known products are automotive brakes, pipes and flooring. We do not expect to find it in personal consumer goods, but in 2015 four types of crayons were found to contain asbestos. The crayons were manufactured in China and sold in the United States. We do not expect that asbestos would be in our children’s crayons.

This past week it has been reported that asbestos has been found in some makeup products sold by a popular store for young teenagers. Tremolite fibers, one of the forms of asbestos, were reportedly found in the talc of one of the lines of cosmetics. Currently in the United States the Food and Drug Administration does not permit the use of asbestos in cosmetics. However, the FDA does not require manufacturers to test their products, nor even recommend that the most effective means be used to identify asbestos. The store involved is conducting its own investigation. They have stopped the sale of the product while the investigation is ongoing. We do not expect to find asbestos in our children’s makeup.

Protecting our children from harm is a primary responsibility of parents. Sometimes the harm is hidden. The time between exposure and developing the disease is decades. Less than 1% of people exposed to asbestos develop mesothelioma. Of the less than 1% that do develop mesothelioma at least 80% is caused by identifiable exposures to asbestos exposure decades earlier. The remaining mesothelioma cases may very well be caused by other asbestos exposures that are now being uncovered, such as asbestos in cosmetic products.

Asbestos related diseases are preventable. Awareness about what asbestos is, education regarding where it is used and in what products is available. The Asbestos Disease Awareness Organization is a web site to check out to become educated and aware of the dangers of asbestos (

Asbestos is not banned in the United States it is important that we all become aware of the potential danger of this carcinogen.

– Lisa

Thinking of Mesothelioma Survivors on National Cancer Survivor Day

Sunday June 4, 2017, was National Cancer Survivor Day. This day is set aside each year to “demonstrate that life after a cancer diagnosis can be a reality.”

When I see a familiar face cruising the hospital in a wheelchair or walking with a family member it gives me great joy. Remembering back to the days of their hospitalization and the unsure days that they faced, the turnaround is great to experience for the patient and the family.

This week I spoke to several mesothelioma patients. The first was a woman who was in her seventies, who had many complications, but is home with her daughter. She was thrilled and had a huge smile. She admitted that she was still unsteady on her feet, but she had no regret about her treatment. She was well supported by her grown children who continue to accompany her to her medical visits.

The next patient was a gentleman who has been out three years. His hospitalization was also complicated and lengthy. He appeared physically well, but he did not appear to be happy. He has a supportive wife and family, but is weighed down by the fear of the disease. We talked about his life and how he filled his days and what he did with his time. He is currently enrolled in a clinical trial and has felt good about that. He spends time with his grandchildren. When asked if he keeps in touch with anyone from the mesothelioma world he said no. The one person he had a relationship with has died.

I went home thinking of him and his family and what could help him. Treatment for mesothelioma can cause fear, anxiety, depression, and at the least uncertainty. The emotional toll of his hospitalization seems to have lingered with him. It would be helpful for him to join a support group to share his experiences with others who have also gone through similar experiences. His wife would also benefit from having someone to talk to as well as him.

Another patient was also back. He returns regularly for a thoracentesis. Once every two months or so he returns and has the procedure. He appears to be happy and is grateful for the treatment and the relief it provides for his breathing.

Dealing with a devastating diagnosis of mesothelioma brings a host of emotions. Everyone reacts differently and handles it as they see fit. Despite the progress in the physical treatment of mesothelioma, the psychological treatments need to be a part of the healing process.

There are many resources available to help live with cancer. There are support services including support groups, on line groups, and disease related groups. There are articles on the internet from cancer survivors and what worked for them. If you need help with this part of your journey you are not alone. “Too many of us are not living our dreams because we are living our fears.” Les Brown.

– Lisa

Identifying Emotions at End of Life with Mesothelioma

No matter what the age, the diagnosis of an aggressive cancer like malignant mesothelioma is devastating to the patient and the family. For most of us, facing our death, or the death of a loved one can bring up intense feelings that are at a minimum uncomfortable to deal with. Reality is different than the expectations a lot of people have of the dying process. Dealing with the emotional aspects of mesothelioma, is important both for the patient and their loved ones. There are many emotions that come up and a lot of them cannot be neatly wrapped up and dealt with without help.

A family member of a patient who was not doing well recently confided in me that the illness really had “brought out the worst in them.” There are a lot of emotions to deal with and unlike television they do not get wrapped up in an hour show. There is the feeling of shock with the diagnosis. Shock is also present with fear. Fear is present from the beginning. Fear of the unknown. Fear of dying. Fear of being alone. Fear of suffering. Fear of being a burden to your loved ones. There are many fears that you and your family face. Fears are best identified and managed by pinpointing exactly what the fear is and dealing with it. This is not easy.

Anger is often directed at the ones closest to you. The family member that I was talking with explained that her husband was so angry about the diagnosis that everything she did annoyed him. She was trying her best but she could not deal with his remoteness. His anger was directed totally at her. She knew that he needed to redirect his anger to the disease but he was not there yet.

Some of the other emotions that pour out at this time are grief. Grief at what you are losing – your life, your relationships. Coming to terms with what has given your life meaning, your past, accomplishments and your regrets. Anxiety, depression, the symptoms can also be identified and managed

We have seen many different people deal with dying in different ways. Often family members ask us what to say, what not to say. A lot of the time the answer is to just listen. Sometimes it is the smallest act of kindness- a cup of coffee, a smile, a hug that can make a difference. There is no one size fits all approach.

There is help available. Someone who is not as emotionally connected to the family can help with coping with these overwhelming emotions.

My patient’s wife was able to talk with her pastor. Her husband is doing better emotionally. Reality is different than television. Dealing with death and dying is real. Life is short and the important things are the relationships and memories that you create.

– Lisa

Simple Questions

As a nurse, you never know what patient’s story will have an impact on you. I recently had the honor of meeting a patient who was undergoing a thoracentesis.

Thoracentesis are procedures done frequently for many reasons, in mesothelioma often patients have them at the beginning of their journey, and sometimes at the end of their journey for comfort. They can be done for diagnostic reasons, the fluid is sent for testing, or for therapeutic reasons for the comfort of the patient. The procedure is usually done with local anesthesia only and patients feel better afterwards. A thoracentesis is a relatively quick procedure which can take 50-60 minutes. It is ideal if the patient can sit up   The proceduralist then uses an ultrasound machine to find the fluid and inserts the needle under visualization. In the institution that I work in we usually limit the fluid draining to 1000cc’s. The needle is inserted into the pleural space between the lung and the chest wall. The goal is to remove excess fluid – usually there is approximately 30 cc in this space.

Mr. W. had one other thoracentesis in December of 2016. He was having one now because he was feeling short of breath. He was quiet and had a beautiful smile. It was evident without any questions or conversation his disease was taking over. As we explained the procedure we talked about his life and his family. He proudly told us he had 4 children. His eldest recently purchased a restaurant and was a big success. The pride he wore on his face was undeniable. He spoke of his daughter who would graduate from college, and planned to come home and stay with him this summer because he did not know how much time he had left. The silence in the room at this time was deafening. He continued to tell us how proud he was of his other two children and how he loved his wife. He told his story with humor and grace.

At this point, the young resident that was assisting with the procedure, asked him a simple question. How is your family doing with all this? Usually we think of these questions but they are not asked. People don’t like to talk about death and dying it can become the elephant in the room.   He was at ease with this question and almost seemed relieved that someone was willing to listen to him. He spoke how he was a different man now than he was 3 months ago. His physical appearance had changed and he was dealing with more physical obstacles. He is not always able to do the tasks that he used to do around the house. He has grown weaker. His appetite is poor and he is unable to maintain his weight, and requires a lot of rest. He was stating these changes as facts. He has high hopes for this procedure to improve his quality of life. Being short of breath and feeling tired he said gets old and is limiting.

For Mr. W. the procedure was a success, he felt better and was going to be headed home. He was anxious to get home with hopes that his quality of life improves.

Sometimes the simplest questions are the hardest to ask but do the most good.

– Lisa

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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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