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Flexibility Plays an Important Role in the Mesothelioma Journey

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.

New Immunotherapy Drugs Show Promising Results for Certain Cancers in Clinical Trials. Is Mesothelioma Next?

Participation in Clinical Trials is how progress is made in medical research.  The trials are regulated and must conform to rigorous standards and be able to be replicated. Research scientists dedicate their careers to making progress with treatments for diseases using Clinical Trials. The inclusion and exclusion criteria are very specific. Some Clinical Trials are not able to be done due to lack of enrollment. Participation is voluntary and only with informed consent that the patient can withdraw at any time. In the United States it is estimated that only 5% of adults eligible to participate in a Clinical Trial sign on.

Progress can be slow and results are often not what the researchers had hoped for. Responses can vary by individual participants and success is often made in small percentages of people responding to the treatment. 

This past week some very exciting news was published in the New England Journal of Medicine and reported widely in the media.  A surprising report was published of the results of a Clinical Trial with a small sample of patients diagnosed with a specific mismatch-repair deficiency rectal cancer and the immunotherapy drug Dostarlimab, brand name Jemperfi. This specific type of rectal cancer makes up 5-10% of all rectal cancers. 

Before beginning the standard treatment for this type of rectal cancer, which is chemotherapy followed by radiation followed by surgery, these patients joined a Clinical Trial testing Dostarlimab infusions before the standard treatment.  Dostarlimab is classified as an immunotherapy drug.  It has been approved by the FDA for treatment of certain types of endometrial cancers. The results were a surprising 14 out of 14 patients having a full remission.  No evidence of their disease was found!  For 100% of the patients enrolled in the study to have no evidence of disease after six months of treatment is what researchers dream of.  The importance of this response is exciting for all of the patients and researchers and for possible results with other cancers. More research with a larger number of patients will need to be done.

These results  are encouraging for research for malignant mesothelioma that are ongoing with some Clinical Trials including immunotherapy drugs. 

With renewed enthusiasm we encourage those diagnosed with Malignant Mesothelioma or any other cancer to checkout www.ClinicalTrial.gov or ask your treatment team about eligibility to participate in a Clinical Trial. 

    

For Patients, Nutrition and Exercise Plays an Important Part in the Mesothelioma Journey

Nutrition and exercise plays an important part in a person’s journey with Malignant Mesothelioma.  Recovering from Mesothelioma treatment can be difficult. Whether it is recovering from chemotherapy, radiation, or surgery it can be challenging regardless of the type of treatment you have experienced. 

Nutrition can play a key role in recovering from your treatment. Choosing foods that are high in protein and fat will offer the most reward. Offering starchy foods or carbohydrates like pasta, bread, potatoes and sources of protein like fish, chicken, meats, nuts, turkey, and cheese are great options. For many, these food choices can be overwhelming and difficult to eat. Breaking down meals to smaller portion sizes and more frequently may be easier. If food is not the best choice, drink high calorie protein drinks.  There are many protein drinks available to suit your needs and taste. We have cared for many people who have undergone surgery or chemotherapy and food is the last thing they can enjoy. 

We encourage patients to weigh themselves weekly to monitor progress. Eating when recovering can be a huge chore for some and can become a daunting task. If possible, try to eat one more thing than you did the day before. 

For many their taste buds have been altered. Many times, we hear that food has a metallic taste when receiving chemotherapy. Just keep trying foods and taking in calories. Along the road to recovery things change. If you are recovering from surgery or chemotherapy the taste buds will change again. Maybe the food that tasted awful a few weeks ago will taste better down the road.

Many medical centers where one receives their care can provide nutritional support with nutritionists. Adequate nutrition to maintain energy, muscle mass and your weight may help with tolerating your treatment better. The American Cancer Society states, proper nutrition during treatment supports your immune system and may lower your risk of infection and help you heal and recover faster.”

Many people attempt to  continue with their exercise regime throughout treatment, and others never had a regime and become engaged in one.  Walking is one of the easiest and accessible forms of exercise. Whatever your choice of exercise is there are many benefits to it while recovering from your treatment with cancer. Exercise can lower your risk of depression, anxiety, improve sleep and reduce the risk of developing other chronic diseases. Many people include stretching and breathing exercises as well.

Healthier lifestyles can result in improvement of quality and length of life for some cancer survivors, according to the National Cancer Institute.   Surround yourself with people who will maintain positivity and cheer you on. The benefits of developing a healthier diet and exercise habits during treatment may carry over into survivorship. According to the National Cancer Institute, research suggests that these healthier behaviors may improve the quality and length of life of some cancer survivors. If you have questions, reach out to your treatment center and see what support is available to you. There are many support systems to help with nutrition. Patients who have journeyed before you with the same issues are often  willing to share what worked for them, when recovering from and living with Mesothelioma.

 

Commitment is a Key Ingredient for Mesothelioma Treatment

Having been involved with the mesothelioma community for many years, one of the defining qualities of this community is the commitment of the team. The team the patients and their families meet and the ones they never meet. Researchers have committed themselves and their careers to finding treatments for this highly complex disease for decades.

What makes a researcher continue to dedicate themselves to this challenge? Progress comes slowly and not without setbacks. Often one of the answers we receive is the stories of the patients and their families. 

The passion that clinicians have for the patients affected by this disease does not waiver. Over the decades, through success and failures, they continue to work tirelessly toward a cure.

Teamwork, collaboration, and sharing have evolved over the years. Research has brought the community closer and benefitted patients. Because the patients are involved in the mesothelioma community, their passion feeds the researchers.

When talking with a researcher, they were excited about how they were taking a study that was done, looking at it with a different approach, and now we’re adding to it. This researcher was excited about the opportunity. A young researcher worked for a couple of years in the lab. Their enthusiasm was palpable.

Another long-term mesothelioma expert spoke passionately about the progress made in their career and how the treatment has been refined. The options for treatment had become specialized. Options that when they started their careers were ideas for Clinical Trials have now been proven and are a regular part of treatment options.

None of this has been easy. The road to progress in treatments of malignant mesothelioma has been long. The scientific process is strict, with results needing to be replicated independently. The science is the steam behind the engine, but the engine is the person.

Recently, while visiting a patient staying in a local hotel, he told me his weekend schedule. I was taken back. He had reconstructive surgery, where his mesothelioma returned. This was not going to interrupt the list of things he wanted to do for him. He was going to an NBA game, and the following day, he would cross the state line to check out a casino. When I told the surgeon on Monday, he could not have been more elated. This kind of approach is why the mesothelioma team does what it does. They want people to live their lives the way they choose to.

Thank you for the years of dedication and perseverance to the many scientists behind the scenes working towards a cure for malignant mesothelioma.

Where Can Mesothelioma Patients Find Hope?

With the state of the world right now, it is hard to maintain a hopeful outlook. Is there a place for hope?

From the larger version of what is going on in the world’s stage, to the very personal journeys we are all on, is hope enough or even possible with the current world events? It is hard not to despair against the overwhelming odds and events that are going on. Despair being the opposite of hope.

When diagnosed with a life threatening cancer, or any time we pause to reflect on our lives, we review our wishes, our hopes, and what has happened to our lives. Our hopes range the spectrum and are as different as we all are. We hope for a cure for our disease. Hope for no pain. Hope that your loved ones’ pain is eased. Hope that our time left is meaningful. Hope plays a part in any cancer journey. 

A pioneer in Mesothelioma research, Dr. David Sugarbaker, used to say “when hope is in the equation, the odds don’t matter.”

What if despite what you hope for, the outcome is not what you wanted? What do we do when we lose a loved one to cancer?

One person turned their despair into hope and hope for others. In 2009, Greg Chastain lost his mother to cancer. One of the things that he enjoyed doing and his mother enjoyed watching was his performances in community theaters. When his mother died he was appropriately devastated. A week after, he went on with the show he had planned to be in. His theater family was so supportive, he decided to do a one time benefit to raise money for cancer research.

The benefit was such a success, he started Voices for Hope. “We are ordinary people on an extraordinary mission to find a cure for cancer.” Voices of Hope, all volunteer performers whose lives have been affected in some way by cancer, perform and raise money  and donate all of it to cancer research, for the collective good. Research toward a cure. One person turning despair into hope. Hope for a cure for cancer.

Research for malignant mesothelioma has long been supported by individuals who have been affected by this disease. Maybe the cure did not come in their lifetimes, or their loved ones’ lifetime, but maybe it will come in their children’s lifetime. Hope for better outcomes, for the collective good.

To have hope is to want an outcome that makes your life better. We hope that this positive example that one person took with his despair may potentially help to impact  many of us, through successful research to a cure.

As we  all collectively join together, w  hope for peace.

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