Questions about mesothelioma? Call 1-800-726-1860


  • 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.

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

Talia’s Journey

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, 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?

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

NINTEDANIB and Malignant Pleural Mesothelioma

The drug Offev or Nintedanib, also known as BIBF 1120, is currently showing promise in treating patients with malignant pleural mesothelioma. Nintedanib is classified as an oral triple angiokinase inhibitor. Nintedanib targets receptors that play a role in tumor growth and development of metastasis in malignant pleural mesothelioma. The cancer cells release growth factors, bind to activate growth factor. In order for the tumor to spread or metastasize angiogenesis takes place. Angiogenesis is blood vessel formation. The tumor needs new blood vessels to grow. Nintedanib uses anti-angiogenic strategy that is different from other approved treatments. Nintedanib is a small molecule that targets three receptors known to be involved in angiogenesis.

The pathways that the drug uses are a potent intracellular inhibitor of tyrosine kinases. It targets platelet derived growth factor receptors (PDGFR) a and B, vascular endothelial growth factor receptor VEGFR 1,2, and 3. FGFR 1,2 1nd 3 fibroblast growth factor receptors.

The LUME-Meso phase 11 trial in patients, showed patients given this drug by mouth plus the standard chemotherapy of pemetrexed and cisplatin had significantly longer progression –free survival than those treated with a placebo and the standard therapy. Overall survival was also longer with Nintedanib (18.3 vs. 14.5 months.)

The company Boehringer Ingelheim applied and was granted approval as an orphan drug status for the drug Nintedanib for the treatment of malignant pleural mesothelioma by the United States Food and Drug Administration in December 2016. Currently Nintedanib, under the tradename Offev, is approved for the treatment of idiopathic pulmonary fibrosis.

In 2011, a clinical trial of patients who have idiopathic pulmonary fibrosis, a debilitating disease that affects the lungs, characterized by disease progression that includes lung deterioration and scarring. The disease is difficult to predict but the mean survival time from diagnosis is 2.5 to 3.5 years. This study in which 432 patients compared BIBF 1120 with a placebo and found those who took the drug Ofev had a decline in their rate of reduction of lung function, with fewer acute exacerbations and preserved the quality of life of the participants. Nintedanib was approved by the Federal Drug Administration in 2014 for the treatment of idiopathic pulmonary fibrosis.

The recommended dose is 150mg of Nintedanib is twice a day by mouth. It should be taken with food. It is not recommended for patients with liver disease, depending on the stage of the disease.

One of the most important thing to know is that OFEV can cause birth defects. Women should not become pregnant while taking OFEV,

Some of the more common side effects are elevation in liver function tests, diarrhea, nausea and vomiting. Decreased appetite was also reported. A small number of patients had thromboembolic events that have led to myocardial infarctions- heart attacks, strokes, and small number of gastrointestinal perforation.

Currently there are 4 Clinical Trials on listed for mesothelioma and Nintedanib. Three are recruiting and one is not yet recruiting. The LUME-Meso phase ll trial is a multicenter worldwide trial, with sites in the United States. The second trial is to be based in Europe, and is not yet recruiting. The third trial listed is based in the United States and is for treatment of recurrent mesothelioma with Nintedanib. The fourth trial is based in France for many solid tumor cancers, including mesothelioma and nintedanib.

We have reviewed the 2 clinical trials for Nintedanib and malignant pleural mesothelioma. One is being tested as a drug option for recurrence. The second is being given along with first line chemotherapy. The research is exciting and the results promising. Ask your mesothelioma doctor if your disease might benefit from these clinical trials.

Raising Awareness About Rare Orphan Diseases Such as Mesothelioma

Malignant mesothelioma is a rare disease. It is one of approximately 6,000 rare diseases that have been recognized. These diseases are often referred to as “orphan diseases” Rare diseases are those that affect fewer than 200,000 people in the United States, with a population of 330 million people. In other countries, the numbers are different –with numbers varying from 1 to 8 per 10,000 people. Having a rare disease, it follows that few medical professionals are experts as they see so few of these diseases in their practices. Some of the web sites that you can find information on are the National Organization of Rare Disorders (NORD) The United States government offers on its National Institute of Health web site, information on Genetics and Rare Disease Information Center GARD, created in 2002 by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases Research (ORDR) to help people find information about rare diseases. Orphanet is another option for rare diseases and orphan drugs, the site is Europe focused and based.

It has been recognized that it is vital for patients and families to obtain, reliable up to date medical information for rare diseases. It is also important that they have the option of a supporting community, either on line or in person at conferences.

Some of the rare diseases we have all heard about such as mesothelioma, cystic fibrosis, Tourette’s Syndrome and Amyotrophic Lateral Sclerosis-“Lou Gehrig’s ” disease.

Rare diseases also have a day every year to increase awareness. It is held internationally on the last day of February. The theme for 2018 is research. February 28, 2018 is the next one planned.

Another issue when dealing with rare diseases is to get the pharmaceutical companies interested in research and development of drugs that will have a limited market. Research and development of drugs cost millions of dollars and many years to develop. According to the web site ; In 1983 Congress passed the Orphan Drug Act (ODA). The ODA created financial incentives for drug and biologics manufactures, including, tax credits for costs of clinical research, government grant funding, assistance for clinical research, and a seven-year period of exclusive marketing given the first sponsor of an orphan-designated product who obtains market approval from the Food and Drug Administration for the same indication. At the same time, federal programs at the FDA and the NIH began encouraging product development, as well as clinical research for products targeting rare diseases.

In 1983, the United States Food and Drug Administration established the Office of Orphan Product Development. Since this law was signed by President Reagan in 1983, more than 200 companies have brought almost 450 orphan drugs to market. Some of the drugs have been approved to treat other more common diseases and then are “repurposed” to treat rare diseases. For some rare diseases, the drug approval process is based on one well run clinical trial.

Please let us know if you have any questions.

How Much Time Do I Have?

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

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


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

  • 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.

Recent Articles

Have a question? We can answer it!

Mesothelioma Questions