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Talia’s Journey

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Being diagnosed with a rare disease often offers challenges that might seem insurmountable to some. Patients and family members who have a loved one diagnosed with malignant mesothelioma know of the challenges that are faced with the diagnosis, access to treatment and decisions regarding the right treatment and the timing of when to have the treatment.

Mesothelioma is a rare disease that has developed a supportive community over the past approximately 15 years that gives patients and families hope along their journey.

Perhaps you have seen the news coverage of Talia Duff and her battle with a rare genetic disease. Talia is a six grader from Ipswich Massachusetts who has a life-threatening disease, Charcot Marie Tooth Neuropathy Type 4J or CMT4J. It is a progressive neurodegenerative disease that affects the nerves that lay outside of the brain and the spinal cord causing profound weakness of the limbs leading to paralysis and later difficulty breathing as the disease advances. This disease is a subset of another disease, Charcot-Marie-Tooth, which is a hereditary disease of the nervous system. Charcot-Marie-Tooth affects 1 in 2,500 Americans. CMT4J affects approximately 22 known victims worldwide. Talia is currently in a wheelchair as her mobility has been affected.

Talia’s parents were understandably devastated by the news and with the options. There are no clinical trials, no treatment and they felt no hope. They researched the internet and brought together interested researchers, one of them, Dr. Jun Li at Vanderbilt who has studied CMT4J. The researchers believe the gene FIG4 mutation causes CMT4J, the thought is to advance the gene therapy and replace the mutated gene with a healthy gene. By doing the procedure it would not only halt the disease but allow peripheral nerves to heal and give Talia back some of her strength. This needs to go through more research including a Clinical Trial. The cost of this happening would be time and money- 1 million dollars. Talia and her family had neither.

Talia’s parents started a 501c foundation for contributions, a website, www.cureCMT4J.org/talia and started brainstorming to find a way to make it happen. They turned to social media. The community responded. There were baseball games, shoelace sales, 50/50 raffles and numerous other fundraisers. Talia’s six grade classmates began getting involved. Selling ingredients to make cookies in a glass jar, raffles, they did a video that appeared on national television. Her parents appeal was in People magazine. In December, they conducted a “twitterstorm” held by her classmates and teen agers from surrounding communities to raise the remaining $200,000. Talia and her parents reached the goal of a million dollars and announced it at an assembly of her classmates in early January.

Rare diseases such as malignant mesothelioma, and CMT4J need a community, support, research and hope.

As nurses, we have the good fortune of being able to put names and faces and people’s stories to people with malignant mesothelioma. Talia and her community have now put a face to another rare debilitating disease, CMT4J. We all pray that the results will be positive for Talia and her family. We look forward to a time when in the words of Mrs. Duff, “We’re so overwhelmed with gratitude for everyone who has gotten us this far. And now Talia is giving other families hope. To every family out there in a similar fight, we want to say, ‘Don’t give up. Anything is possible.’

– Ellie

What do you – the patient – want?

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Facing a life-threatening challenge such as a diagnosis of malignant mesothelioma can be overwhelming. Your world as you know it has been changed. What do you do? Where do you turn? After gathering the information, it is time to think about it all in the context of your own life.

What is important to you? What do you want? For patients recently diagnosed with malignant mesothelioma, these questions are difficult to put into perspective.

For many years the medical community has been “teaching” patients about diseases and medications and what you should and should not do. The doctor would order the medication, treatment and recommend therapy. The patient’s role would be to follow the instructions, fill the prescriptions, take the medications as directed, make the appropriate follow up appointments, and follow the plan of care as outlined by their medical team. This system has limited success for many reasons. It allows for none of our own uniqueness as people and does not take into account that we are all individuals with our own unique perspective, goals and dreams for our own lives. Another factor contributing to the limited success is the financial cost of all this. Over 80% of Americans that are insured have deductibles. Can a patient afford the deductibles, the possible travel to a center, the cost of the medication, chemotherapy, and the time away from the family? Is that what they want? For some medical professionals, old and young, they have not yet embraced the importance of patient engagement, partnering with patients, and asking the important questions that help a patient choose what they want, after being shown the possible medical treatments that are options for them.

What do you do with this information? No one is trying to overwhelm you, they are trying to present the information so that you can then ask and answer the important questions with your family and friends. What do you- the patient – want? What can you tolerate?

This is a process- the decisions are not made in one day.

All of this involves taking the time to listen to patients and families, listening to their stories, concerns, hopes and fears. It involves the patients honestly deciding if this is the journey that they want to embark on or would they choose a different path.

Mesothelioma patients facing very difficult decisions need support. Recently a couple in there 50’s came to our mesothelioma center. They came with some information about mesothelioma, not the latest information and were surprised about what they heard. At the beginning of the day the patient was withdrawn, her husband did the talking. She had recently been diagnosed and had been told that mesothelioma was “a death sentence, that would happen very soon.” After listening to their story, they had their appointment with the mesothelioma specialist, they left with one thing they did not have in their pile of medical records at the beginning of the day- hope.

What they decide for their course of treatment is their decision- they have heard the options- they have found a community- they have hope. What is right for them is their decision.

– Ellie

How Much Time Do I Have?

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A patient recently diagnosed with malignant mesothelioma asked what he thought was a simple question, “how much time do I have?” As the mesothelioma expert answered his question, it was not what he expected. He had read the statistics and the statistics told him an average number and he was expecting to hear a number close to it. He had read the average time that patients diagnosed with mesothelioma live.

One of the most frequently asked questions of any one diagnosed with malignant mesothelioma is how much time do I have? With the diagnosis of any serious illness time is what we focus on to help put the unthinkable in context. Before the diagnosis to some of us time was an abstract thing in our lives, something we didn’t have enough of, something we couldn’t control. Something that we knew was finite but not something that we thought of all the time. Once diagnosed with malignant mesothelioma the amount of time can become something that is very important.

The concept of time is something we learn about at an early age. All through life time plays an important part in the organization of our lives. It is the framework for our lives. Events that shape our lives are often marked by the times of our lives and what we were doing at that point. Time is something none of us is promised.

So many things are involved in planning for living with a cancer diagnosis. When receiving the diagnosis and being admitted for treatment it can be- How long do I have to be in the hospital? How much time will it take to feel normal again? Is this the last time I will do this one thing? Go to my favorite restaurant? Will I know when my time is up? Should I go home or will I get more time if I try another treatment?

With mesothelioma, it is difficult to answer that question. For example, in recurrence recent progress has been made. Recurrence, four or five years ago the treatment options were limited, now there are new treatment options aimed at recurrence. The timing of the diagnosis is crucial. Is the disease early, intermediate, or advanced? What cell type is the disease, is it epithelioid, sarcomatoid, or mixed? What shape are you in physically? What do you want?

The statistics on time and cancer diagnosis are not black and white. They are as individual as everyone’s journey with the disease. The question how much time do I have is as individual as the disease itself and the individual person.

I recently saw a patient and he told us that he had only one year to live. He spoke about this fact very routinely and matter of factly. He told us about how he asked this question many times but no one was willing to answer it. He thought his time was limited but wanted confirmation, at his last appointment he was speaking with the doctor and the doctor was getting ready to end the appointment. Before he could leave the room, the patient asks the doctor to close the door and to sit down. He explained- I know I am sick with a terminal illness. It is important for me to get the facts. The patient expressed how he needed to know how much time he had left. He explained he had three daughters and needed to make plans. His doctor then explained that he could give him the median statistics but he did not have a crystal ball. The doctor spent time going over his options and what the statistics actually meant. What the patient heard is that he has one year left to live. He is now using this as a positive motivator to prove the statistics are wrong. Did the doctor tell him that? No, he did not.

It is a common question with no simple answer. Do any of us know how much time we have left? It is better to spend the time we do have living life to the fullest, doing what is important to us!

– Ellie

Recognition

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The person who provides support for the patient with malignant mesothelioma, or any other serious illness, is a vital part of the whole team. Their role is all encompassing, as they are on the front lines from the beginning of the journey to the end. Many have become experts on the disease, navigating the medical system, and supporting others with their journeys. It is a role that can be life changing, not only for the person with the disease, but for the caregiver.

Over the years of taking care of patients with mesothelioma, we have seen some of the best caregivers as they advocate for their loved ones. Recently we witnessed the importance of recognizing their contributions and the positive impact those words can have on a caregiver.

Mr. A was diagnosed with pleural mesothelioma shortly after the first symptoms appeared. His wife did extensive research and started taking notes of all his appointments. Names, dates, what was discussed, what the recommendations were. She had filled up many notebooks on their journey. Mr. A referred himself to a mesothelioma center, underwent extensive testing, had chemotherapy pre-surgery, and had a slow recovery post-surgery. He faced his health challenges with Mrs. A’s continued support. She questioned, researched, encouraged, and asked questions of any one who had any contact with her husband. On a recent return checkup six months later, Mr. A is much better; living with mesothelioma and enjoying his life. He is adjusting to the changes that living with this disease has brought to him and his family. Mrs. A is happy that her husband is better and continues to be one of the best patient advocate’s that we have seen.

Talking with Mrs. A. about her experience as her husband’s caregiver, several interesting points came up. As a retired teacher, the only way she felt she could keep up with all the medical terms and doctors’ appointments were with a notebook, not a computer, not an app, a simple notebook. She took it everywhere with her and used it extensively to navigate the medical system. She also shared that most of the time she was afraid and the way she was trying to cope was ask questions. Information was vital to her. She was very grateful for the team, but particularly grateful to Mr. A’s surgeon for saving his life. As Mr. A’s surgeon told Mrs. A, you were the one that saved his life. You were the one that when things did not seem right, you called or insisted that he call. You were the one who has been with him through the whole journey, you were the one who saved his life.

Caregivers are vital members of the mesothelioma team, and their contribution needs to be honored and recognized.

– Ellie

Experience

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When seeking the best possible treatment for any medical condition, how do you go about making this decision? What do you use to make this very important decision? Do you search the internet, ask family, friends, anyone you know in the medical community for recommendations? What are your criteria for these important decisions about your health and well-being?

For malignant mesothelioma, a very rare cancer, the path ahead involves crucial decisions, that you, the patient, must be comfortable with. There are many factors to be considered. Each of us is our own unique person and must factor in how we approach this life-threatening cancer.

One of the factors that we see as very important is experience. Experience as defined by the Merriam
Webster Dictionary ” direct observation of or participate in events as a basis of knowledge, the fact or state of having been affected by or gain knowledge through direct observation or participation.” Seek out someone who has experience, who works with other people that have experience in their area of expertise. It takes a team approach of experienced professionals to recommend the treatment options that are going to give you the best chance at long term survival.

Experience is an asset that has immeasurable value. Experience might start with a text book, but comes with being at the side of a patient. It includes learning to deal with each unique person and their issues, by seeing common ground with other patients. Patient A might have epithelioid pleural mesothelioma and have a very extensive support network. Patient B might have epithelioid pleural mesothelioma and not have a support network, be far from home, and be dealing with family issues before the diagnosis. Experience enables the team to tailor their approach for what is going to be the most beneficial for the patient.

It is estimated that the average Primary Care MD across the United States sees 1-2 patients with mesothelioma in their careers. How can they be expected to know the latest research, on this rare cancer?

The choice of how you treat your mesothelioma diagnosis is yours. When weighing your options include how much experience your medical team has as a factor in your search. We have seen patients who thought they did not have options, find that in the hands of an experienced mesothelioma MD, that they had options and treatments available to them.

– Ellie

Timely Diagnosis

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When you are focused on something for a period of time sometimes you can lose perspective. For the past 10 to 15 years’ experts have been recommending that when diagnosed with malignant mesothelioma that you seek out an experienced medical team at a center for excellence- a team that is involved with research, and can give you your best options. Since this message has been around for the past 15 years or so, it was surprising to read a recent study on what the treatment patterns of patients diagnosed with malignant pleural mesothelioma actually are. The study is a reminder of the difficulty in diagnosing malignant pleural mesothelioma. In addition to the diagnosing challenge, the importance of encouraging patients to seek further treatment needs to be re-enforced.

A recent retrospective study concentrated on the treatment patterns of patients with malignant pleural mesothelioma. Led by Dr. Marjorie G. Zauderer, MD, MS, Co-Director of the Mesothelioma Program at Memorial Sloan Kettering Cancer Center in New York, the abstract was presented at the 2017 ASCO Annual Meeting:” Patterns of comorbidity, treatment, resource utilization, and referral in malignant pleural mesothelioma patients in the U.S.” The study used the Market Scan insurance claims database of patients diagnosed with malignant pleural mesothelioma between January 2004 and December 2015.

The patients were 65.4 percent male and 34.6 were females. The average age was 71 years old. The conditions that they had before diagnosis were chronic pulmonary disease 20.7%, metastatic solid tumor- 17.5%, and diabetes 15.4%.

For treatment, the study found that 51.2% had no chemotherapy, radical surgery was utilized only 4.1% of the time.

The most common diagnosis that patients received at the beginning was pleural effusion-16.6%, chest pain 10.7%, shortness of breath 9.6%. and cough 8.5%.

The time that a patient presented to his MD with lung related symptoms and a diagnosis of malignant pleural mesothelioma was a median time of 77 days. Times ranged from 23 days to 258 days.

Malignant pleural mesothelioma is an aggressive cancer, although there is no cure currently, there are treatment options, that can improve a patient’s quality of life. When there is a delay in diagnosis, treatment options can be limited.

This is a very interesting study and shows there is still much work to be done, and education in order for patients to have the most updated treatment options, in a timely manner.

– Ellie

Orientation Meeting

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We routinely attend a new patient orientation at the hospital where we work. It is a very well-planned meeting that is designed to give an overview to patients and families on the diagnosis, the supports available, the program, and the logistics of being a patient.

At a recent meeting involving patients that are newly diagnosed with malignant pleural mesothelioma it struck me how difficult it is to know who is the patient. A room full of people and 3 or 4 are the patients. The roles of the family members and the patients are new identity’s taken on in a place that is new to them, with medical language that includes long words and confusing answers. The diagnosis of mesothelioma usually takes place after much more common diseases have been ruled out. At this meeting the patients and families learn about the logistics of being a patient. Housing options, parking availability, support services, a lot of information presented in a short time. They also learn about the disease itself, statistics, research, and a general overview of the history of the program. A lot to take in for anybody. Sometimes these meetings are the beginning of relationships with other families, friendships out of a devastating illness, in a foreign place, with confusing medical words.

What does the mesothelioma patient look like? At the beginning of the journey the newly diagnosed patient looks like everybody else. There are no visible identifiers. Most are healthy looking people of all ages, shapes, and sizes.

What do the caregivers look like? At the beginning they look like everybody else. They are all different ages, shapes and sizes.

Mesothelioma can affect anybody and does. The toll it takes is evident as the journey goes on. For the patient, some of the physical effects are the weight loss, and other various things that come up that need to be attended to. As the journey goes on it can be easier to recognize the family members as the stress is more pronounced on them. A lot of the time the caregiver is the one that looks different. Weight loss, tired looking, ageing as the journey continues.

On this day I was only able to identify one of the three people in the room as patients. The other two looked too healthy to have mesothelioma.

One of the mesothelioma patients described his journey to this point as “starring in a horror movie that you cannot wake up from.” The other two patients quickly agreed, you could feel the connection starting between the three.

This meeting is a stop on the journey, a stop that can include the beginning of new relationships and support throughout the challenging days ahead.

– Ellie

Reactions

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This past week Senator John McCain was diagnosed with brain cancer. The type of cancer he has is aggressive. Much like mesothelioma, he has treatment options and it is reported that he is weighing which one he will choose. The news was received with people wishing him well and urging him to fight on and that he will defeat cancer. Whatever course of treatment he chooses everyone wishes the Senator well. A few days after the announcement the Senator was back at work in Washington. Doing what he wanted.

“You beat cancer by how you live, why you live, and the manner in which you live.” Stuart Scott the late anchor on ESPN, said in a speech while accepting the Jimmy V Award for Perseverance in July of 2014. When diagnosed with a life-threatening illness what do you do? What do you want the closing chapters of your life to look like? How do you want to spend your days? What is important to you? Do you want to explore every possible treatment option? How do you want to spend your time?

Although it might seem that at this point in your life you have no control, that cancer has taken that away from you, it could be offering you the time to decide what is most important to you. To reflect on what is important to you and what is not important.

Recently a patient was dying in the hospital and wanted to go home. Every minute was important to her, she wanted to spend her time with her family. She was undergoing a palliative procedure done in order to make her more comfortable, the procedure was a success. She felt physically better, mentally her anxiety was high- she equated the two hours invested in the procedure as hours better spent with her family. She was discharged immediately after the procedure, she will not return. She has chosen to spend her remaining time at home with her loved ones.

In addition to dealing with your own mortality you have to deal with other people’s reactions to your news. Well-meaning people will tell you stories of other people they knew or possibly themselves who faced cancer and what happened to them. These stories and well wishes are told to boost your spirits and offer support, and sometimes they do. Every person’s life is unique, everyone has their own story to tell, from their own unique perspective.

Regardless of the outcome of Senator McCain’s treatments he has already won at life. He is living his life on his terms. His life of service to our country and the manner in which he has conducted himself throughout his life is a testament to life. As his own unique journey with brain cancer begins, we offer him our support.

– Ellie

Active Listening

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We have noticed over the years of talking with mesothelioma patients and their families that mesothelioma is an insidious disease. We have educated ourselves through seminars, speaking with patients, and general observations. There are some important factors that mesothelioma patients have taught us that you will not learn in a book, or in a webinar or a class.

What do mesothelioma patients need? Often it is the most basic of elements that make the difference. First is to become an active listener. Active listening is a popular phrase in our society. It implies that the person doing the listening fully concentrates, understands, responds, and then reacts. It requires a skill that is not commonly practiced in today’s busy world. Every patient and most caregivers would like to be heard. Not only do they want to tell their story but they want to express their emotions about this new found condition. Many people need an open-ended question to start the ball rolling. Telling your story aloud validates what is happening and allows the story to become real. Retelling the events that led up to the position you are now in, becomes true or actual. Saying it aloud, allows it to confirm it exists and not be imaginary, all those physical symptoms that you were unsure if they were your imagination or attributed to the aging process now have a name.

One of the most challenging topics that we engage about in conversation is death. It is an uncomfortable topic. Many times, the patient or caregiver will want to talk about anything else but this topic. It becomes a topic to be avoided. Allowing a person to talk about their final stage of life allows the person to have a platform to speak about a situation that is uncomfortable for most people. Often, we hear comments such as “that won’t be you,” or “don’t be negative,” these comments are meant to be helpful, but can shut down the conversation. We must allow patients to talk about this time of their life. There is no timeline in life for this conversation, some might feel that after being diagnosed or before deciding on a treatment regime is too quick, there is no best time. Just have the conversation. What do you or your loved one want? What is acceptable to you? How would you like to live out your final days?

There is a balance that must be achieved. By having the conversation you are not going to quicken you or your loved one’s death nor by not having the conversation you or your loved one will not live forever. It is important to realize that there could be many days, months, or years living with mesothelioma and enjoying life. Each of us is on our own unique journey, complete with great days and not so great days. Death is something we cannot control as all of us will experience it.

Talking about our wishes does not mean that you are giving up. It does not imply that you and your mesothelioma team will not continue to fight against this disease and explore any options to a better quality of life. It acknowledges that your journey will bend as all our journeys do.

There is an excellent book, “Being Mortal,” by Atul Gawande that explores this topic. There is also an active movement called www.theconversationproject.org that supplies, guides, and information on addressing this issue.

– Ellie

The Importance of Listening to Mesothelioma Patients

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As anyone who has ever spent time at a busy hospital knows, your appointment time and the time you are seen are sometimes hours apart. Reality and schedules do not often keep together. Over the years, I have seen many reactions to a delayed appointment and the range of emotions are as varied as the patients. No one likes to wait. Everyone’s time is important. Despite the efforts of many time management consultants, multiple new on time initiatives it remains a problem. One of the root causes of the problem is that you are dealing with people. The procedure that is scheduled for 45 minutes’ turns into an hour when an unexpected finding requires consultation with other experts. Patients are not kept waiting intentionally but it happens. Occasionally the system can work, and at that point it is important to remember why the health care team needs to actively listen to each patient and their individual needs.

It was 1:40 p.m. on a busy Friday afternoon. The next patient was scheduled to be in the room undergoing a palliative procedure that sole purpose was to make her feel better. She had flown in to have the procedure done and had a flight out at 5 p.m. There was eye rolling by some, mumbling by others, but some members of the team took it as a challenge. ” We will make this happen,” the nurse assured the patient. ” You will be in an Uber by 3:30 on the way back to the airport. ” This patient had a biopsy earlier in the week and the results would not be back for another week. She had been fighting cancer for several years and now it had started down an aggressive path. As she told her story from start to finish, it occurred to the nurse that her business-like attitude of not taking no for an answer, was the way she was fighting her cancer. It was not so much that she makes the flight, as it was that she felt you were working with her so she could have some control over a health situation that was quickly spiraling out of control.

The radiologist came in and after some non-invasive testing and comparing of her films could not find the fluid that would magically make her pain go away. After conferring with the patient’s team and lengthy discussions between all the team it was decided that there was not enough fluid to drain, no procedure on this day would make her feel better.

The doctors exited the room, the patient was momentarily flustered, when the nurse offered to page her primary oncologist so that they could discuss the plan going forward. The oncologist immediately called back and discussed with the patient for another 10 minutes the plan. There would be prescriptions to pick up, and a new medication regime as they waited for the biopsy results to come back. The patient was back in control. Now it was 2:45 how was she going to be in an Uber with her new medications by 3:30 as promised?

Gathering her luggage, a wheel chair and a nursing student, the nurse pushed her over to the pharmacy, which involved a series of elevators and bridges, a total of 3 city blocks apart. The pharmacist had received the prescriptions, and was in the process of filling them. The medications were ready at 3:23 p.m. The Uber was called, in the car at 3:29 p.m. Patient on way to airport, in control with a plan, and on time for her flight.

In life, it is often the little things that people help you with that you remember. No one knows the road ahead for any of us, putting yourself out for someone else will not cure her cancer, but it will help her control her journey, and plan and cope for whatever is ahead. Listening is important!

– Ellie

  • This field is for validation purposes and should be left unchanged.

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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