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Ask the Questions

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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

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

Mesothelioma Five Wishes

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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

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

MESOTHELIOMA CLINICAL TRIAL REVIEW – DANA-FARBER CANCER INSTITUTE (BOSTON, MASSACHUSETTS)

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We encourage participation in clinical trials for research leading to a cure for mesothelioma. It is known that nationally the statistics for participation in adult cancer trials is between 3-5% of adults who have a cancer diagnosis.

For mesothelioma patients and families that are interested in clinical trials, researching clinical trials and eligibility can be a time-consuming barrier to participation. The information about clinical trials is available on www.clinicaltrials.gov.

Our goal is to feature one mesothelioma clinical trial monthly and break it down to understandable terms, to decipher the eligibility requirements, and to possibly encourage participation in these trials.

Listing-Clinical Trial.gov – NCT03075527

Title– A Phase 2 Study of Durvalumab in Combination with Tremelimumab in Malignant Pleural Mesothelioma

Official Title– A Phase 2 Study of Durvalumab in Combination with Tremelimumab in Malignant Pleural Mesothelioma

Sponsor- Dana-Farber Cancer Institute

Astra Zeneca- collaborator

 

Location- Dana-Farber Cancer Institute Boston Massachusetts

Principle Investigator– Mark M Awad MD Dana-Farber Cancer Institute

Contact- Mark M. Awad, MD, PhD   617 632 3468 mark_awad@dfci.harvard.edu

Patients will receive Durvalumab and tremelimumab both intravenous infusion once per day for every 28-day cycle. Participant s will receive tremelimumab for up to 4 cycles beginning with cycle 5 day 1. Patients will continue to receive durbalumab alon until clinical or radiological progression of disease

Tremelimumab blocks a receptor on immune cell that normally suppresses immune attack

Durvalumab is a drug that block a protein often produced by cancer cells or surrounding cells to suppress immune cells from attacking cancer cell

Number of Participants-40   Start Date April 10, 2017 Estimated Study Completion September 30, 2024

 

Purpose– The study is studying two immunotherapies as possible treatment for malignant pleural mesothelioma. Those drugs are Durvalumab and Tremelimumab. This is a phase 11 clinical trial

Eligibility Criteria– 18 Years and older

Inclusion Criteria:

  • Written informed consent prior to any study-specific procedures not considered part of routine medical care
  • Histologically or cytological confirmed unresectable or medically inoperable malignant pleural mesothelioma
  • Disease progression after treatment with at least one line of chemotherapy that include a first line platinum agent in combination with an anti-folate
  • Participants must have measurable disease according to modified RECIST for pleural malignant mesothelioma. (Bone metastasis are not considered measurable) Prior radiation to the only site of measurable disease will make the participant ineligible unless the lesion has been demonstrated to grow after the completion of radiation therapy
  • Participants must be willing to undergo a biopsy at the start of this study and an on –treatment biopsy if safe and feasible
  • Participants must be at least 28 days from any major surgery
  • ECOG performance status of 0 to 1
  • Patients must t have adequate hematologic renal, organ and marrow function
  • Must be 18 years and older
  • Female and Males who are of childbearing ages must consent to one form of contraception from the time of screening and must continue until 180 days after last dose of investigational product.
  • Patient is willing to comply with the protocol for the duration of the study including undergoing treatment and scheduled visits and examination including follow up

Exclusion Criteria–

  • previous treatment with an immune checkpoint inhibitor, CTLA-4, PD-1, or PD-L1, including prior treatment with either durvalumab or tremelimumab
  • Known central nervous system metastasis. Patients with known brain metastases, spinal cord compression, carcinomatous meningitis, or leptomeningeal disease may be enrolled if they have been treated, and are no longer taking corticosteroids and have been stable in imaging for at least 3 weeks
  • Patient receiving corticosteroids doses greater than 10 mg per day for more than 14 days
  • Patients receiving other systemic immunosuppressive drugs for more than 14 days
  • Patients with a history of interstitial lung disease or pneumonitis that has required steroid administration
  • Active or prior documented autoimmune disease within the past 2 years including but not limited to systemic lupus erythematosus, sarcoidosis syndrome, or Wegener’s granulomatosis Patients with Grave’s disease or psoriasis not requiring systemic treatment within the past 2 years not excluded
  • Inflammatory bowel disease or any other serious gastrointestinal condition associated with diarrhea
  • History of primary immunodeficiency
  • History of allogenic organ transplant
  • History of hypersensitivity to tremelimumab, durvalumab or any excipient
  • Know history of tuberculosis
  • Receipt of live attenuated vaccination within 3o days prior to study entry or within 30 days of receiving durvalumab or trememlimumab
  • Patient with history of secondary primary malignancy. If patient had curative malignancies with no recurrence within 5 years prior to study. Resected basal and squamous cell carcinomas of the skin, and completely resected carcinoma in situ of any type.
  • Patient who have had chemotherapy, biologic therapy or investigational therapy with 21 days including bevizumab or radiotherapy with 7 days prior to entering the study or those who have not recovered from adverse events due to the administration of these agents
  • If you have received any previous immunotherapy agent with adverse event at least or greater than grade 3
  • You cannot receive any other investigational agents
  • Active infections, gastritis symptomatic heart failure, hypertension, ( sbp greater than 160/100with medications)
  • Unstable angina
  • Cardiac arrhythmia
  • Active bleeding diatheses
  • Active peptic ulcer disease
  • Psychiatric illness or social situations that would limit compliance with study
  • Mean QT interval corrected for heart rate greater than 470 ms calculated from 3 electrocardiograms using Frederica’s correction
  • Known history of HIV
  • Acute or chronic hepatitis B or hepatitis C
  • Pregnant women
  • If involved with planning and/or conduct of Astra Zeneca staff and or staff at the study site
  • If patient has had a pneumonectomy
  • How the research Study is Designed to Work

Phase 11 clinical trial tests the safety and effectiveness of an investigational drug to learn whether the drug works in treating a specific disease. The drugs durvalumab or tremelimumab are being studied to see how the drugs help as compared to the usual treatment for malignant mesothelioma.

Durvalumab is a drug that blocks a protein often produced by cancer cells or surrounding cells to suppress immune cells from attacking cancer cells.

Tremelimumab blocks a receptor on immune cells that normally suppress immune attack.

Both of these drugs have been used for treatment of malignant mesothelioma, but the combination has not been tried in treatment in mesothelioma. They have been used successfully together in melanoma.

Sources:

www.ClinicalTrials.gov

With any clinical trial, all participation is voluntary. Before enrollment a detailed consent form will be reviewed with the participant and signed. The participant can withdraw from a clinical trial at any point in time. Think about participating is able, the only way to progress to a cure for mesothelioma is through clinical trials.

Please do not hesitate to contact us with any questions.

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

Mesothelioma Centers of Excellence

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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

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

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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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