In the New Year: Moving On And Growing While Honoring Dad

This time of year is beautiful for so many reasons; the birth of Jesus being celebrated, time being spent with cherished family and friends, the snowy weather, I could go on and on about things I love about Christmastime. On the other hand, it’s a tough time when you are mourning the loss of a loved one. No matter how much time passes, it’s always a hard season for me without my Dad being here.

Just last night, I saw this picture of my father dressed as Santa. Every year for his Church Christmas party, he would emerge dressed as the big man in red. Even though he sometimes gave himself away (he would forget to change his boots and take off his watch almost every time!), you could see how happy he was listening to the children tell him about their year and how good they’ve been… even though sometimes, a child would be brutally honest with him, saying that they fell a bit short of the nice list.

When I saw that picture, I cried. I cried because this particular snapshot was from his last Christmas. I cried because I feel like my daughter has been cheated by not getting a chance to experience this tradition with him. I cried because no matter how old I get, I’ll always need my Dad. I cried because I don’t like change, and this change was one that I never could have seen coming.

Even though it is difficult, my family decides to carry on. Not just for my daughter, but for Dad. He loved Christmas and would want us to continue our traditions, as well as to make new ones together. Just because there are new things added, it doesn’t take away from the value of the old.

This is a great message for the New Year! Moving forward doesn’t have to mean leaving things behind. Growing doesn’t mean that you overlook the process that got you to where you are. Carrying on does not equal forgetting the past. It is a new year, a whole year of possibilities awaits you. So dive in, enjoy this time that God has given you, but don’t forget to reflect on years past, and smile at all of your treasured memories.

FDA Approvals

Anytime the U.S. Food and Drug Administration approves another anti-cancer therapy, the mesothelioma community takes notice. This year, two landmark approvals took the cancer world by storm: gene therapy and an approval based on a biomarker and not a tumor type.

FDA Commissioner Scott Gottlieb said in Dec. 7 remarks before the U.S. Senate Committee on Health, Education, Labor & Pensions Hearing:
https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm588046.htm

“We’ve seen two recent approvals of CAR-T therapies for cancer, where a patient’s own immune cells are re-engineered – using the tools of gene therapy – to target a patient’s individual cancer. This form of gene therapy represents a whole new paradigm in treating cancer. And the early results are changing the way we treat serious tumors.

Over the next several years, we’ll see this approach become a mainstay of treating, and probably curing, a lot of our most devastating and intractable illness. At FDA, we’re focused right now on establishing the right policy framework to capitalize on this scientific opening.”

Read about the first-ever gene therapy approval.

In another first, the FDA approved an anti-cancer drug based on a biomarker and not cancer type. The FDA granted accelerated approval to Keytruda as a treatment based solely on the genetic mutations of a cancer and not on the type of cancer.

The FDA’s Richard Pazdur, M.D. announced in a May 23 press release:
https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm560167.htm

“This is an important first for the cancer community. Until now, the FDA has approved cancer treatments based on where in the body the cancer started—for example, lung or breast cancers. We have now approved a drug based on a tumor’s biomarker without regard to the tumor’s original location.”

Keytruda is also approved in the U.S. for use in melanoma and lung cancer patients whose cancer continues to grow after a prior round of chemotherapy failed to stop the progression. The immunotherapy drug was wildly successful for Mavis Nye of England, who is now an eight-year mesothelioma survivor. She recently launched her Mavis Nye Foundation to give back to the community that supported her throughout her journey.

Read about the first-ever approval for an anti-cancer drug for a biomarker.

Clinical Trials

The National Cancer Institute promoted its nationwide clinical trial that is open to thousands of cancer patients for treatments based on the genetic makeup of their tumors. For patients suffering from cancer that continues to grow, despite previous treatment, the NCI-Molecular Analysis for Therapy Choice (NCI-MATCH) clinical trial offers hope. The trial was developed to determine whether treating patients with drugs that target the gene abnormalities believed to be driving their cancer will shrink their cancer regardless of the cancer type.

Read more about the NCI-MATCH trial.

To make the list of the top mesothelioma stories of 2017 doesn’t always mean it is good news. One of the big stories this year, unfortunately, is that the number of mesothelioma cases continue to rise. In its report “Malignant Mesothelioma Mortality — United States, 1999–2015,” published March 3, the U.S. Centers for Disease Control and Prevention reports that despite a decline in asbestos exposure due to regulatory actions and the decline in the use of asbestos, the number of mesothelioma deaths each year is still rising.

Read more about the report here.
http://www.asbestosdiseaseawareness.org

Asbestos Related News

None of the breakthrough drugs would be needed if people were not exposed to asbestos in the first place. Yet, exposure continues to be a real threat, and scientists, environmentalists and physicians continued their call for a ban on the toxic mineral.

At least one country recently took action to stop the spread. Brazil, the world’s third highest producer of asbestos, recently banned asbestos in the country.

Many in the U.S. mesothelioma community hope that this action opens the eyes of U.S. government officials and a U.S. ban won’t be far behind. Linda Reinstein, President/CEO and co-founder of the Asbestos Disease Awareness Organization, is doing her part and saw progress when the Senate passed the Alan Reinstein Ban Asbestos Now Act (ARBAN) of 2017.

Read more about what ARBAN could mean for Americans.

About Mesothelioma

Mesothelioma is a deadly cancer of the lungs, heart or abdomen, caused by past exposure to asbestos. Mesothelioma has a long latency period where those exposed to asbestos may not exhibit symptoms for decades after exposure. Mesothelioma can be treated with surgery, chemotherapy and radiation, however, the likelihood of recurrence of the cancer is high. There is no cure for mesothelioma.

Communication is Key Throughout Your Mesothelioma Journey

When discussing mesothelioma we often refer to the path from first symptoms to treatment and living with the disease as a “journey.” When you or your family member find yourselves on this unwanted journey, one of the most important skills that you must develop is communication. This may sound obvious, but ensuring you understand everything requires attention to detail.

For most people, this journey is filled with a language that is foreign to them. Terms with long complicated names, a vocabulary of words that are hard to pronounce become all too familiar. The diagnosis of malignant mesothelioma can be overwhelming and confusing on so many different levels.

A recent study of a small number of lung cancer patients and their family members found that one of the issues they faced was that over time communication would break down with the medical team. As you go from one part of the journey to another, for example from chemotherapy to participation in a clinical trial, the number of members in your medical team grows making it difficult to know who to contact for what issue.

How can you avoid breakdowns in communication with your mesothelioma medical team? One of the most important factors is that you feel comfortable with your specialized mesothelioma team. You need to feel that you are known – not as a patient with malignant mesothelioma, but as a person. Personalized medicine for patients with mesothelioma includes the best treatment options as well as the best support staff. Your team is dedicated to reaching the best possible outcome for you or your loved one. That is the goal, but we are all human and miscommunications can happen. Sometimes the information was not communicated at all, or was not understood. Sometimes it is just not what the patient or family wanted to hear.

Throughout your journey make sure that you and your team continue to communicate. Make a list of your questions and ask them. This past week we had a patient who had been told by her local doctor that nothing would work for her, chemotherapy, surgery, radiation, clinical trial options, nothing. He advised her to enjoy the time she had left.

She came to our mesothelioma center with no hope and no questions. Her husband had come with many questions. By the end of the day she also had many questions. Her journey with mesothelioma had changed, but now she had a plan, support, and hope.

Everyone’s path is different, keep the lines of communication open with your mesothelioma team no matter what stage of your journey.

Your Presence is the Perfect Present For Mesothelioma Patients

This time of year everyone is rushing around hoping to make the holidays perfect. While that means something different to everyone – decorations, gifts, lots of food, or chocolaty desserts – for those suffering from mesothelioma it may just mean having their loved ones close by their side.

During the holiday season, feelings of sadness, loneliness and anxiety about an uncertain future for mesothelioma patients and their families are often accentuated leaving them depressed and overwhelmed. One thing that could lift your mood, and is within your control, is to simply take the time to revel in the enjoyment of your family and friends. Jennifer Gelsick, a “Faces of Mesothelioma” author, said on Friday that her father’s presence was the best present she had at Christmas, and just having his family home for the holidays buoyed her father’s spirits.

If you have a friend or a loved one who is sick over the holidays and you are not able to visit them, take the time to send a hand-written card or make a phone call to let them know you are thinking of them. In this day of technology, a personal touch can go a long way towards brightening someone’s day.

Sit back and try to enjoy the enjoy the simple pleasures of the holidays: the lights of the season, a light snow falling, a football game on TV, a fire in the fireplace or the bite of a delicious cookie. And, especially, the company of your family and friends. Remember that it is your presence that is the best present!

Happy holidays from all of us at MesotheliomaHelp.

Dad's Presence-Despite Losing to Mesothelioma

Dad’s Presence at Christmas Was The Best Present

Anyone who knew my father knew that he loved Christmas! The snow, the family time, the togetherness, and the true meaning of the season made his usual smile sparkle even more. It was always a magical time for Dad and my entire family.

On Christmas morning, once presents were open, he always had something up his sleeve. Somewhere, hidden in the house, was a big present that no one else knew about. I always looked forward to this; not the gift itself, but his excitement in knowing that he was about to surprise us. It was fun, absolutely, but it wasn’t what mattered. It was his presence, not the present, that was important.

Christmas of 2011 was a rough one for us all. Dad was going downhill quickly, and no one knew why. Doctors were stumped, we were sad, and it was clear to everyone that he may not be around for much longer. Still, he tried his best to push through his exhaustion, shortness of breath, and pain, and smiled. That year, however, there was a sadness behind it.

Fast forward to 2012. Dad was finally correctly diagnosed that year, had his surgery, chemotherapy, and a clinical trial, and was feeling great! I think this might have been the happiest I had ever seen him on Christmas. He laughed, joked, ate, and of course, surprised us all, as per usual! I will always remember his smile that day; he had been given a gift from God, and it was written all over his face.

The next year, 2013, everything was different. We were celebrating our first Christmas without my father, the glue who held us all together, only about two months after he passed away. We did our best to keep our traditions as normally as possible, only to find ourselves at a loss. We realized that Dad wouldn’t want that, so we tried to pick ourselves up and remember the reason for this day. God’s promise. The beauty of Jesus’ birth.

This year, we’ll be celebrating again, as we do each year. The addition of my three year old daughter adds a beautiful light, and looking into her blue-green eyes that look just like Dad’s, I remember all the memories I made, particularly on Christmas, with my angel father. I am reminded of the importance of family and the message of Christmas. We continue on, never forgetting, but keeping Dad’s memory close to our hearts.

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In the New Year: Moving On And Growing While Honoring Dad

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