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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.

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Mesothelioma Centers of Excellence are Open for Patients

We frequently suggest to patients and patient’s families to seek out a Mesothelioma Center of Excellence if diagnosed with this rare disease. For many, this includes traveling to get care at one of these centers. When the pandemic was first at its peak, a lot of travel was suspended and many just did not feel comfortable traveling away from home. For some who live locally to their Mesothelioma Center of Excellence they were able to have treatment but that was not the case for everyone.  

Each state has lifted some restrictions that were incorporated during the crisis of the pandemic, and the Mesothelioma Centers of Excellence are open. Many physicians have adapted to telehealth visits to accommodate patients during the pandemic. Thankfully, we are a world of technology and many test results, scans, and lab values can be expedited from your hometown medical center to an expert of mesothelioma, allowing a lot of preliminary work to be done prior to your arrival. 

If you are traveling to a Mesothelioma Center of Excellence, we have some suggestions:

  • Inquire about their protocols for arrival of appointments. Do you need to call and announce your arrival prior to coming into the office?
  • Can a family member or friend accompany for the visit? If not, can you call in and be placed on speaker phone while the consult is active with physician and patient?
  • Are you required to bring hard copies of scans, reports, etc.?
  • Will your visit require an overnight stay at local hospital? If so, can they help with accommodations?
  • Asking what you should expect during this visit. The Mesothelioma Center consists of many medical professionals. Will you meet them in person?

These are a few suggestions to make your visit more streamlined. We urge you to get to a Mesothelioma Center of Excellence as soon as possible, as this is a very aggressive disease. The medical professionals realize this is a difficult situation coupled with the world’s current situation. We want you to know the centers are here for you. 

There have also been many volunteer opportunities that continue to be available to help you facilitate your treatment for your mesothelioma. For example, Angel Flights has been successful in transporting patients for treatments and returning them home. Please reach out to us or a Mesothelioma Center so we can assist you with making the connections that can help you with your disease.

Balancing Mesothelioma with the Coronavirus Pandemic

Worried PatientWhen someone is diagnosed with malignant mesothelioma, the battle is both mental and physical. The symptoms are numerous and some more frightening than others. Mentally it can have an outsized effect on one’s peace of mind, affecting your physical wellbeing as well as your emotional wellbeing.

So how does a mesothelioma patient keep mind and body in sync during a strenuous time like the coronavirus pandemic? 

First, look around at yourself and jot down your physical symptoms. Put factual numbers to paper. A few strategies you might consider include:

  • Monitor daily weight.
  • Monitor calorie intake if you can, or just list what you eat.
  • If you have an O2 sat monitor use that and record the findings.
  • If you don’t have an O2 sat monitor monitor, record the distance you can walk each day.

Now that really is the easier part. Mental wellbeing can be a challenge. How do you keep your head in check and not get carried away to dark thoughts and fear? If you are having a hard time being calm, there is a fair amount of advice available. Here are some different approaches:

  • Close your eyes, take a deep breath, and exhale slowly.
  • Say out loud three things you are grateful for today.
  • Connect with others. Talk with people you trust about your concerns and how you are feeling.
  • Take a break from news, including social media.

If these ideas aren’t working, contact your primary care provider and they will try to help with your physical or mental challenges at this time. Reach out to your mesothelioma team. Remember that mesothelioma patients are high risk when it comes to coronavirus and the COVID-19 virus’ related respiratory symptoms. 

You are not alone. These times are uncharted territory for all of us. We can get through it with help from one another.

Keytruda and Mesothelioma Explained | Mesothelioma Help

The Potential of Nanoparticles in Treatment of Mesothelioma Patients

In May, Mesothelioma Help reported that researchers from the University of North Carolina Lineberger Comprehensive Cancer Center found a “promising new nanotechnology-based delivery method” for immunotherapy using nanoparticles. Now, another team of researchers report they have found a way to use this microscopic drug delivery system “for diagnostics, therapy, or both” for cancer care.

In the latest research from the Moscow Institute of Physics and Technology (MIPT), a team of biophysicists report they engineered a way to cover nanoparticles with biological molecules that allows them to deliver therapy and then examine the effect the drug has on the cancer cells. The particles, for example, can carry properties that can home in on the cancer cells to pinpoint the therapy as well as fluorescent properties to light up the cancer cells for diagnostics.

Using theranostics, the integration of therapeutics and diagnostics, in mesothelioma care is an exciting prospect. Most of the treatments used for mesothelioma, a terminal asbestos-caused cancer, eventually become ineffective, but it  may not be discovered until the mesothelioma cancer is no longer treatable. With diagnostic capabilities embedded in the nanoparticles, the effectiveness of the treatment can be monitored as needed.

The researchers developed a “molecular glue” using the barnase-barstar protein pair to hold the therapeutic and diagnostic components together. The success of this research is due to this glue that can bind up to one million times greater than other types, and can bind with antibodies, drugs, fluorescent molecules and targeting agents. When the two proteins are tightly bound they form “a bifunctional compound” with both therapeutic and diagnostic properties, that  enables targeted drug delivery.

This type of personalized medicine follows the concept that the cancer’s genetic makeup can be used to tailor a patient’s treatment. Mesothelioma can grow at a different rate and respond to different treatments in each patient, that is why mesothelioma patients need treatment that is aimed at their unique characteristics. By allowing the therapeutic aspect of the nanoparticles to be modified, this personalized care optimizes the potential for success of the treatment.

“The demonstrated capabilities show this method to be a promising alternative to commonly used … techniques in nanobiotechnology, theranostics, and clinical applications,” wrote the authors in the study published in ACS Applied Materials & Interfaces.

Mesothelioma, a rare form of cancer typically affecting the lining of the lungs, is highly aggressive and is resistant to many cancer treatments making it a difficult disease to treat effectively. The prognosis for mesothelioma patients is usually grim: the average survival time varies from 4 – 18 months after diagnosis. Approximately 3,000 Americans are diagnosed with mesothelioma each year.

The paper was published in the April 27 issue of the  journal ACS Applied Materials & Interfaces.

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“Lung Decision Precision” Screening Tool May Lead to Early Detection of Mesothelioma

The key to increased life expectancy when battling lung cancer, and other extremely aggressive cancers such as mesothelioma, is early detection. Unfortunately, while there are standard screening tests and guidelines for breast cancer, colon, and prostate cancer, lung cancer screening tests are limited to high risk patients, defined as life-long heavy smokers. Now, researchers have developed a personalized lung cancer screening decision tool which incorporates past asbestos exposure as a criteria to guide individuals and physicians in determining their lung cancer screening options.

Researchers from the University of Michigan have unveiled a lung cancer screening Q&A tool that can be used by medical professionals to identify people who may benefit from a low-dose computed tomography (LDCT) screening. For people who do not have any symptoms often associated with lung cancer or pleural mesothelioma, such as difficulty breathing, coughing or fatigue, there is seemingly no reason to screen for lung cancer.

That is why the personalized Lung Decision Precision tool for physicians, which presents a series of questions targeting the person’s smoking history and asbestos exposure, is important. The tool is designed to open discussion between the physician and patient to determine whether a lung screening is appropriate.

“This allows us to identify which patients are in the preference-sensitive zone for the decision about screening, and which ones have a very clear potential benefit to them,” said Tanner Caverly, M.D., M.P.H., an assistant professor in the Division of General Medicine and Department of Learning Health Sciences at the U-M Medical School.

The Lung Decision Precision Tool asks the critical question: “Has the patient been exposed to asbestos at work?” Based on a “yes” answer, the patient is asked to confirm the following:

  • You worked in one or more of the following occupations: asbestos worker, insulator, lagger, plasterboard worker, dry waller, plasterer, ship scaler, ship fitter, rigger, shipyard boilermaker, shipyard welder, shipyard machinist, shipyard coppersmith, shipyard electrician, plumber/pipefitter, steamfitter, or sheet metal worker.
  • You worked in this job for at least 5 years.
  • You began working in this job at least 15 years ago.

Asbestos is a human carcinogen, known to cause lung cancer and pleural mesothelioma, a cancer of the lining of the lungs diagnosed in nearly 3,000 Americans each year. The U.S. Environmental Protection Agency warns that there is no safe level of exposure. In addition, the Occupational Safety and Health Administration reports, “every occupational exposure to asbestos contributes to the risk of getting an asbestos related disease.”

While no longer used in new buildings in the U.S., asbestos was added to a variety of products including insulation, steam pipes, furnace ducts, floor tiles and roofing shingles, in buildings and homes built prior to EPA regulations were put in place in the 1970’s. People who worked in construction, ship-building, plumbing and in the military are at a higher risk than others of developing mesothelioma.

The only recommended screening test for lung cancer is LDCT, according to the Centers for Disease Control and Prevention. During an LDCT an X-ray machine scans the body and uses low doses of radiation to make detailed pictures of the lungs to help find abnormal areas that may be cancer. The American Cancer Society reports that in a study of 50,000 smokers or former smokers aged 55 to 74 researchers found that people who got LDCT had a 20% lower chance of dying from lung cancer than those who got chest x-rays.

Mesothelioma is often not diagnosed until symptoms are present, and the cancer is in its late stages. At this point, prognosis is  often less than one-year. Stopping tumor growth and preventing metastasis is especially critical for mesothelioma and lung cancer where the diseases are highly aggressive. This can only be achieved if the mesothelioma cancer is detected early.

“As a clinician I’d like to have this [tool] for many of the things I do, where it would be meaningful to know how beneficial something could be for the individual patient, and we could talk about whether it’s indicated for them,” said Caverly.

The research team also launched a companion website, “Should I get screened”, for patients that includes easy-to-understand information about the pros and cons of lung cancer screening, and includes a “lung cancer risk calculator.”

If you have been exposed to asbestos in the past, talk to your doctor about the Lung Decision Precision tool.

Find out more about the tool in the May 29 issue of Annals of Internal Medicine.

Sources:

  • University of Michigan
    http://ihpi.umich.edu/news/scan-or-not-scan-research-shows-how-personalize-lung-cancer-screening-decisions
  • Annals of Internal Medicine
    http://annals.org/aim/article-abstract/2682684/identifying-patients-whom-lung-cancer-screening-preference-sensitive-microsimulation-study
  • Lung Decision Precision tool
    https://share.lungdecisionprecision.com/
  • Should I get screened
    http://www.shouldiscreen.com/
  • The American Cancer Society
    https://www.cancer.org/cancer/lung-cancer/prevention-and-early-detection/early-detection.html
  • Occupational Safety and Health Administration
    https://www.osha.gov/SLTC/asbestos/
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