Thank a Mesothelioma Caregiver During National Family Caregivers Month

November is National Family Caregivers Month. This is a great time to recognize and thank those countless faces who sacrifice so much to take care of their loved one. As a former part-time caregiver myself, I have both experienced, seen, and felt the beauty and the pain of taking on this role.

During my time caring for my father as he fought mesothelioma, I gained a new appreciation for caregivers. They are there 24 hours a day, doing whatever needs done without batting an eye. You’re hungry… no problem. Need a blanket? Here’s two. Not feeling well… already on the phone with the doctor. It is an intense undertaking.

On the other side of the aisle, so to speak, the love that you get to share with the person you’re caring for is indescribable. When you help someone with no expectation of getting anything in return, that’s when you really feel like you’re making a difference. I remember the quiet, “Thanks, Kiddo” that Dad always said when I helped him. The way you could just tell that you made him feel special, loved, and cared for; it was something I will always remember.

So, to everyone out there caring for someone, I say thank you. You play a pivotal role in the life of your loved one. Don’t think for one second that it’s not noticed or appreciated, because deep down, that person knows they need you. They may be too proud to say it, but the feelings are there in their heart. You are important! After all… there’s a whole month celebrating you!

Lung Cancer Awareness Month - Mesothelioma

Turning a Spotlight on Mesothelioma During Lung Cancer Awareness Month

For many people, November means apple cider, pumpkin pie, and Thanksgiving. In the health and medical fields, November is Lung Cancer Awareness Month, which emphasizes education and awareness of all things about lung cancer and other cancers affecting the respiratory system – such as mesothelioma.

This year, help out by making November a month to educate others about mesothelioma and lung cancer by taking part in Lung Cancer Awareness Month. Teaching the facts about mesothelioma, its symptoms, and its causes can help patients, family members, and friends better understand the disease and help advocate for the community.

Pleural mesothelioma is caused by inhalation or ingestion of airborne asbestos fibers. The fibers then become lodged in the lining of the chest, where, over the years, they begin to irritate the tissue leading to cancer. Not everyone exposed to asbestos will develop mesothelioma, but those who do often are not diagnosed until decades after exposure. The treatment protocol for pleural mesothelioma is similar to that of lung cancer.

People who live with pleural mesothelioma, or who care for someone with the cancer, know that educating the public about the struggles facing rare disease sufferers often takes a focused effort from organizations, the government, the medical community and many volunteers.

Early Detection of Mesothelioma is Important

With a vision of “a world where no one dies of lung cancer,” LUNGevity is 100% focused on increasing and improving lung cancer survivorship. In addition, the 501(c)(3) charity focuses on building and sustaining a community for all those affected by lung cancer and through “accelerating research into early detection and more effective treatments” the organization aims to make an immediate impact on quality of life and survivorship in lung cancer patients.

The key to increased life expectancy when battling mesothelioma is early detection. When treating mesothelioma patients, the best outcome is achieved with early detection of the disease by increasing treatment options and improving the patients’ quality of life while battling the cancer.

“LUNGevity believes strongly that everyone can drive progress and change for people affected by the disease, whether through research funding, mentoring a fellow lung cancer patient, or organizing and participating in events and activities to raise funds and awareness,” as stated in the 2016 press release kicking off the awareness month.

Know What Questions to Ask Your Mesothelioma Doctor

According to the American Lung Association, “The diagnosis of mesothelioma is very serious and may be overwhelming and affects all aspects of life in a profound way.” The ALA recommends being actively prepared for each healthcare visit by writing down questions to ensure you get everything you need in the short visit, and that your family and caregivers are thoroughly informed about your wants and needs.

What is the goal of the treatment you are proposing? Is the intent to cure me from the disease or manage its symptoms?
What are the side effects of the proposed treatment and how will they affect my quality of life?
Am I a candidate for any clinical trial?
What are my options for palliative care to address management of my shortness of breath and pain?
Can you help me and my family make decisions about how I will be treated at the end of my life?

Lung cancer is the leading cause of cancer death in men and women with an estimated 222,500 new diagnoses and 155,870 deaths in 2017, according to the National Cancer Institute. Nearly 3,000 Americans are diagnosed with mesothelioma each year.

Visit ‘Faces of Mesothelioma’ to read stories from mesothelioma survivors and their family members about how mesothelioma has impacted their lives.

Use Your Learning Style to Better Understand Mesothelioma

When diagnosed with malignant mesothelioma, patients and families are often entering into a new area of information. This area is complete with its own medical language, long words, and answers that are individualized and can be confusing. When gathering the information to make those important decisions regarding your health, and the course you want to choose for treatment, it is important to understand the information you are hearing and reading about.

Over the years, the approach of the medical team towards patients has changed. It used to be one of “these are your instructions, this is what the doctor ordered.” Meaning it was more do what you are told to do, and do not question your medical team. The doctor was in charge and patients and the medical staff followed orders. This approach no longer works – if it ever did.

What works is the team working with the patient, and the patient’s family, to support whatever decisions he/she makes. The patient is the manager of his or her own life – in charge of the medical decisions, based on the understanding of the medical condition. How do you make these life-altering decisions? These days most people will turn to Google. Is this the best way for you to learn new information? Is reading the information enough for you?

Do you know how you best learn new information? Here are a few different learning styles:

Visual: You learn by sight with images, pictures, colors, or spatial organization of elements.
Auditory: You learn by listening, speaking, sound, or rhythm.
Reading / Writing: You learn best by reading the material, or writing the material down.
Kinesthetic: You move your body to help you learn like tapping your toes or using your hands, including writing or drawing. You basically use your sense of touch.

We all learn in our own unique way, and when it comes to dealing with your malignant mesothelioma treatment, it is vital that you understand and comprehend your options.

You might think that your learning style has nothing to do with the diagnosis and treatment of a rare cancer such as mesothelioma. It does. Over the years many patients have not “heard” or understood what the doctor said. It is difficult to keep all the terms, and options straight. By knowing how you learn, you can then question the doctor and have a better chance of understanding.

FDA Flags Some Mesothelioma Drugs On Quarterly Adverse Events Report

Mesothelioma patients have limited treatment options, and often times these come with some known side effects. While these side effects, such as pain, nausea and fatigue, can be treated by your medical team, there are some “adverse affects” that may require the U.S. Food and Drug Administration to take a second look at the drug. In the FDA’s latest quarterly watch list, it has identified seven cancer treatments, three of which are used in mesothelioma care, as having possible serious risks.

In “Potential Signals of Serious Risks/New Safety Information Identified by the FDA Adverse Event Reporting System (FAERS): April – June 2017” issued Oct. 6, the FDA listed 19 drugs from its FDA’s Adverse Event Reporting System (FAERS). FAERS, according to the FDA, is a database that contains adverse event reports, medication error reports and product quality complaints resulting in adverse events that are submitted to the FDA. It is used as a tool by the agency to look for new safety concerns that might be related to a marketed product.

Although the FDA issues these reports, the agency warns that the information does not give the complete story. The data, according to the FDA, is not an indicator of the safety profile of the drug or biologic, and the report does not establish “causation.” In fact, the FDA reports that “there is no certainty that a suspected drug caused the reaction.”

In the report, however, the FDA does indicate action it will take when looking into the data that caused a drug to end up on the report.

Identified Drugs and Related Mesothelioma Information

Keytruda (pembrolizumab): Complications of allogeneic hematopoietic stem cell transplantation (FDA is evaluating the need for regulatory action), and Stevens-Johnson syndrome and toxic epidermal necrolysis (the “Warning and Precautions” section of the labeling for Keytruda was updated to include Stevens-Johnson syndrome and toxic epidermal necrolysis.)
Opdivo (nivolumab): Complications of allogeneic hematopoietic stem cell transplantation (FDA is evaluating the need for regulatory action.)
Taxotere (docetaxel): Docetaxel and neutropenic enterocolitis (FDA is evaluating the need for regulatory action.)

Both Keytruda and Opdivo work by blocking the PD-L1 protein and activating the immune system, leading it to attack and kill cancer cells. These drugs are immunotherapy treatments and involve allogeneic hematopoietic stem cell transplantation, which translates to donor blood stem cell transplants. Opdivo clinical trials are ongoing for mesothelioma patients and they have shown “significant benefits” for patients.

Keytruda is approved for use in lung cancer and melanoma, and in an unprecedented move, in May the FDA approved the use of Keytruda for any cancer having a biomarker referred to as microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR), regardless of cancer type.

In the approval of Keytruda, the FDA noted potential complications or death related to allogeneic hematopoietic stem cell transplantation after using Keytruda. Stevens-Johnson syndrome is a rare, serious and potentially deadly disorder of the skin and mucous membranes that leads to a painful red or purplish rash that spreads and blisters.

Keytruda has brought hope to the mesothelioma community with mesothelioma warriors showing excellent results from use of the drug. Mavis Nye of England, an eight-year mesothelioma survivor, can now claim remission from her pleural mesothelioma after participating in a two-year clinical trial of Keytruda.

Docetaxel is a chemotherapy drug often combined with gemcitabine as a second-line treatment of lung cancer and mesothelioma. Neutropenic enterocolitisis, as triggered with docetaxel, is a rare yet severe complication of chemotherapy signaled by extreme abdominal pain. If not treated properly, it can lead to death.

This report can be considered as another source of information when determining to use a drug for treatment, and is not an indication that you should halt treatment or use of a drug. Any questions you may have should be directed to your doctor.

Mesothelioma, an asbestos-caused cancer, is both incurable and deadly. Close to 3,000 Americans are diagnosed with the disease each year.

Talk with your doctor to find out which treatment is best for you.

Your Mesothelioma Medical Team Is On Your Side

People can play different roles in your life, and those roles can change dramatically based on the circumstances. The same goes for your doctors and medical team. While my father battled pleural mesothelioma, these amazing people went from strangers to confidants to friends.

When Dad was first diagnosed, we were complete strangers to all of the team. I remember in our first meeting with Dr. Harvey Pass, he entered the room and I immediately felt at ease. Hearing from someone who was optimistic and believed that he could really help was a welcome breath of fresh air. We had come off of the worst news of our lives and were given little hope until he entered the picture.

Once surgery was completed, we continued on with more and more practitioners who specialized in an area of need. They each treated us like real people, and counseled us on what steps were necessary moving forward, and joined in celebrations when the scans were clear.

I will always remember the office of my father’s primary care physician. The morning after he passed away, we were still working on notifying everyone when we got a call from them. They asked me if they could speak to my Dad; when I had to tell them that he was gone, the woman on the other end of the phone broke down in tears, saying, “Honey, I’m so sorry. I really liked your Dad,” then quickly hung up without saying goodbye. Moments later, the doctor called, asking what had happened and offering the most sincere condolences. The staff later joined us at the viewing and funeral, and still check in with us today.

Always remember that your medical team is on your side. They will be with you through your entire struggle and can even become friends. I appreciate all those who treated my father, and also me and my family, although it was in a different way. We thank you from the bottoms of our hearts.

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