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An Update on Malignant Mesothelioma from Dr. Raphael Bueno and CureMeso

The Mesothelioma Applied Research Foundation has a series hosted by their Executive Director, Mary Hesdorffer N.P., that interviews experts in malignant mesothelioma. This month the guest was Dr. Raphael Bueno, Chief Division of Cardiac and Thoracic Surgery at Mass General Brigham Hospital in Boston, Massachusetts.

Dr. Bueno reviewed the progress that has been made. In the not too distant past it was believed that anyone diagnosed with malignant mesothelioma was handed a death sentence. Today, malignant mesothelioma has many options to offer for treatment. The knowledge of malignant mesothelioma has evolved like many other cancers and therefore treatment options have as well.

Dr. Bueno reviewed that in order to understand mesothelioma, we need to understand the genomics of the disease. Genomics is the biology of the structure, function, and evolution of the tumor. Basically it’s understanding the fingerprint of the tumor. Once it is understood how it can react in certain settings, we can treat it. This does sound pretty basic but it has taken a long time to figure this out. Each malignant mesothelioma tumor is unique like one’s own fingerprint.

Another treatment that has been found to be equal or better was the pleurectomy. In previous years, many more extra pleural pneumonectomies (also known as EPP removal of the lung) were performed on patients. It has been found that removing one’s lung in someone that is 70 years or greater can create other issues. Pleurectomy has become the surgical choice. It has also found that instilling IOHC, Intra-Op Heated Chemotherapy, was key in attacking any microscopic cancer cells that could not be detected with the eye. This has also improved survival. 

It has also been discovered that everyone should not have chemotherapy. Some patients do not respond to chemotherapy and their tumor continues to grow and they lose the option of becoming a surgical candidate. Chemotherapy is effective for 23-25 percent of the population for a 5 year survival.   

As the talk went on, Dr.Bueno spoke about local recurrence. He educated the audience about how local recurrence is not metastatic disease, it is just what it is: local. There are options to remove this growth. Ablation or surgical removal of the tumor can be as simple as a day procedure or an overnight hospitalization. Ablation is similar to burning a wart off.      

Dr. Bueno’s closing remarks were about the future and what will help cure this disease. Malignant mesothelioma does not have to be a death sentence. This is an aggressive disease but there are many who are still living beyond five years. He believes staging is critical. Dr.Bueno spoke about getting the mesothelioma patient to a Center of Excellence. He explains we do not have a cure but we certainly offer better outcomes. A Center of Excellence can offer hope to a patient that has been diagnosed. 

Progress to a cure continues!

Unique Perspective: Mesothelioma Patients Can Set Personal Goals

Being diagnosed with malignant mesothelioma is life changing and patients handle this differently. Every person is unique in their response to this news, but how we respond to a serious life altering diagnosis is our own. There is no right or wrong way, as we must allow ourselves or our family members to feel their fear, or anger, or whatever emotion they may be feeling.

Often we hear people apologizing for their reactions or their families actions. The realization that you or a loved one is facing a life changing diagnosis is different from any other challenge you may have faced over your lifetime. Often we see fear, anger, and denial that are expressed in many different ways. The person that receives the diagnosis and their friends and families can become overwhelmed by waves of different emotions.

Recently when visiting a patient recovering from a pleurectomy, he explained that his goals were to get back to being an active person. He was elderly, had surgery, and was home recovering. He had a smooth course as far as complications go. What was bothering him the most was how long it was taking to recover.

He wanted to get back to his previous level of activity as soon as possible. He was an active hiker, skier, cyclist, and walker. His house was surrounded by woods and he was determined to get back to his trails. He explained that when he was outside with nature it gave him a calm feeling, and that is why he loves nature and wants those feelings to come back. 

When reminded that he was only three weeks post operation and he was doing very well, he listened politely. He is determined to get back in the woods and go hiking. He has made that his goal. He knows his health has changed and he has a serious illness but he is coping in his own way. If he can ever get back into the woods remains to be seen.

Change can be hard. Changing our outlook can be overwhelming. What is important in one person’s life may not be important in another’s. The thoughts of hiking in familiar woods after major surgery might not be anyone else’s goal. Respecting every person’s individuality and way they cope is essential to everyone who is involved in the care of or is helping a loved one facing malignant mesothelioma

If you are part of the support team, or are the patient yourself, respect the feelings and emotions that go along with this journey and know nothing stays the same. Every day is a new beginning and that is all we really have. If you are struggling, get involved with a support group or call your mesothelioma team. We are here for you if you need a listening ear or help with resources. You are not alone.

Mesothelioma Patients Can Benefit from Time Outside this Summer

Staying positive and maintaining your overall health to the best of your ability is key for your journey with malignant mesothelioma. This is a difficult time but there are some basic things you can do that will help you. Simply going outside is a positive step. 

Going outside can do so much for your outlook or mental state and your overall health. In the United States, according to the EPA, the average American spends 90 percent of their time indoors. Going outside can boost your mood – no special equipment or membership required, just the great outdoors.   

Another positive benefit of spending time outdoors is an increase in your Vitamin D. Vitamin D is beneficial to your bones, blood cells, and immune system. It can also help with the absorption of calcium and phosphorus. With decreased levels of Vitamin D a person is more likely to get colds and the flu. Also, if a person gets sick with pneumonia with decreased levels of Vitamin D, the outcome can be more serious. Sunlight can keep your serotonin levels up if you go outside as well. This will help raise your energy levels and keep your mood positive.

Just by going outside, there is a chance you may connect with people in your community. Human contact can be important to your mental health. Sometimes being inside we tend to get lost in our own thoughts and this is not always positive. Getting outdoors can distract those thoughts inside your head for even just a few moments. In fact, studies show that time in nature can boost your problem solving skills. If you are feeling frustrated or down, the outside world may change your thinking for even just a short time.

Depending on the weather there may be precautions you should take. Stay well hydrated if the weather is warm. Apply sunscreen, wear a hat, or bug spray if necessary. Also bring a phone in case you need to be in touch with someone, or may need a ride back.

Mesothelioma is a complex disease. Each case is unique, similar to one’s fingerprint. Medical centers continue to push for more knowledge and treatments. Although there are many interventions, ideas, and thoughts on how we treat symptoms, some therapeutic ideas are just basic like going outside. The good news: you don’t need to travel and it costs nothing.

Mesothelioma Patient on Importance of Staying Positive During Treatment

Once a person is diagnosed with malignant mesothelioma and decides on a treatment plan, the anticipation for treatment to begin – and the reality of when it does begin – can be a challenging time. 

Recently while talking with a patient, he offered his perspective on the difference between day 1 and day 2 of beginning treatment. For him, when treatment was going to be initiated, he found his mind in a unique spot. As he took in the new faces, new information, and new surroundings, new hope was born. The anticipation of the day  was finally reality, and his body and mind were going down separate paths. This experience – whether it be chemotherapy, radiation, immunotherapy or surgery – is new, a road never traveled. Although education was provided prior to his intervention it is overwhelming to say the least. This first day is like no other day of your journey. 

For this patient, the second time he had treatment it was no longer a new experience. For him, the reality of what he was going through was met with dread and fear.  The anticipation of treatment and hope was met with growing uneasiness. Familiar faces are not new and side effects are expected and can produce anxiety.  How does one deal with these days ahead, days that once provided hope and now are filled with anxiety and fear?

Wrapping your mind around the positive and trying to focus on the ultimate goal is key. These experiences are trying times and everyone masters these situations differently. Many choose to surround themselves with their most positive support team, others surround themselves with thoughts of a brighter future. Whatever way you choose is yours, and entirely up to you.

Prior to day 2 of your journey, try to  focus on the part of treatment that you found positive. Experiences like treating mesothelioma bring many new possibilities. A relationship of any kind may be positive, or a certain person may have provided a warm smile which may be all you need at that very moment. 

Perhaps writing in a journal as you travel this new path will bring peace to help when you reflect back on some of your symptoms and how they are improving. When people are facing their biggest adversities, sometimes there are strong positive ideas, relationships, or experiences that may change your perspective.

Receiving a diagnosis of mesothelioma is not like any other challenges that you may have faced. As we continue to see our waiting rooms filled with new faces, we are aware of the struggles that you are facing and are here for you. If there is something that you need or have questions about, please ask. The Mesothelioma Centers of Excellence are striving for a brighter future for all who have been affected by this disease one patient at a time.

November is National Family Caregivers Month

October was Health Literacy Month and November is National Family Caregivers Month. Both of these special months highlight the importance of education, support, and understanding when dealing with or caring for a loved one. When faced with a diagnosis of malignant mesothelioma, understanding of the disease and what to look for helps both the patient and the caregiver.

The definition of health literacy from the Affordable Care Act of 2010 is “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make health decisions.”

There is nothing simple about understanding the disease of malignant mesothelioma. From diagnosis through treatment the terminology and descriptions of the disease are difficult to understand and to even pronounce. The process of being diagnosed is usually after weeks or months of tests and scans, and after other common illnesses are ruled out. Health literacy can become an issue immediately.

A “family caregiver” is considered anyone who does not get paid but helps another person do what they can no longer do without assistance. Family caregivers provide extensive assistance which can include medications, shopping, preparing meals, cleaning, advocating, coordinating, educating – the list is very long, and the contributions vital.

For a rare serious disease like malignant mesothelioma, it is important for patients and families to understand what they are dealing with. The options for treatment can be confusing and the plan can change with further testing. The importance of being able to understand and trust your team is vital. Family caregivers are the link between the patient and their medical team. Having someone with you during this journey can be life saving. In order to give the patient the best possible chance for recovery and quality time, the family caregiver’s contribution and understanding of the disease and the patient is very important and often both overlooked and under appreciated.

Looking around, the number of people who in addition to maintaining their jobs and lives also provide care for someone else is staggering. The term “invisible army” has been given to these caregivers who often are not recognized.

We honor and thank all the family caregivers for their huge contribution to ongoing care for another person, family or not!

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