Category: Mesothelioma Diagnosis
The quality of flexibility is best described as the ability to bend without breaking. Facing challenges either physical or mental throughout life and the ability to adapt to the unexpected requires flexibility.
Everyone’s journey in life and facing death is different. Guiding these uncharted experiences can be very difficult for both the person facing their mortality and the family and loved ones trying to help.
When facing end-of-life patients and families often have different perspectives. The perspectives that they have at the beginning of the journey often change as the journey continues.
Recently a patient was facing the end of his life. He had battled his disease for several years and was ready to stop. His family was supportive of his decision and wanted to follow his wishes. The plan was hospice at home with family members taking turns caring for them. The family was able to see that his wishes were honored but it required flexibility. This sounds logical but when emotions and relationships are involved it is not always easy to navigate.
People plan and expect things to go by plan. Everybody has their own scenarios and plans about what they would like their death to look like. Sometimes these plans need to be adjusted. Like birth when the expectant parents have the birthing plan in place, every scenario is planned for. The unexpected happens and the plan needs to be adjusted. Flexibility plays an important part in that.
Malignant mesothelioma is a disease that challenges people every day beginning at diagnosis. It is a rare disease that charts its course from individual to individual.
When facing the end of life for any disease the plan may have to be adjusted. Any disease or end-of-life issue is never neatly packaged and there are no instructions on how to respond and which way to handle decisions and circumstances that are out of their control.
Remain flexible and adjust your expectations throughout your journey. Treasure every moment of this life. Planning is important but the ability to be flexible and adjust to life-ending moments as we respect the wishes of our loved ones is a success. Although the outcome may not be what you were hoping for and the timing may not be long enough, facing our mortality and those of our loved ones is an important part of life.
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.
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.
When 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.
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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