6 Ways to Raise Awareness About Mesothelioma Every Day

FACT: Every year, approximately 3,000 people are diagnosed with mesothelioma in the United States alone.

According to a recent report published in Occupational & Environmental Medicine, an estimated 38,400 people globally will die from mesothelioma this year.

Despite these startling statistics, only one day a year is dedicated to raising awareness about the aggressive, asbestos-related cancer.

That day is today.

Every Sept. 26 is Mesothelioma Awareness Day. On this day, people around the world gather to celebrate the lives of those affected by mesothelioma. We remember those we’ve lost far too soon and support the many survivors continuing to beat the odds. We thank those who spend each day giving back to the mesothelioma community.

But just because Sept. 26 will come to end, our efforts must continue. Just as researchers continue to search for a mesothelioma cure, we must continue to raise awareness about this cancer and the many dangers of asbestos every day.

6 Ways to Raise Awareness About Mesothelioma

When it comes to giving back and making a difference, people often wonder where to start. Thankfully, organizations across the country are providing opportunities for people to give back on Mesothelioma Awareness Day and throughout the year. There is so much we can do for this community.

1. Walk in a Virtual Race

iWalk4Meso is a virtual race with the goal of raising funds for medical research that could lead to a cure for this difficult disease. According to Weitz & Luxenberg, the sponsor of the event and a top mesothelioma and asbestos law firm, this walk was started “because even after many years of medical research, there still is no cure, and we are trying to change that.” For every post in the iWalk4Meso Facebook group, the law firm will donate funds.

2. Tweet About Your Experiences

On Sept. 26 at noon ET, the Asbestos Disease Awareness Organization (ADAO) is hosting an hour-long Twitter Chat “where victims, experts, advocates, and concerned citizens can connect, share, and spread asbestos awareness,” according to the ADAO website. Join the conversation by tweeting your thoughts with #ENDMeso at the end of your tweets.

3. Wear a Mesothelioma Awareness Wristband

Mesothelioma receives far less attention than it needs. By wearing a mesothelioma wristband, people can begin a discussion about the incurable cancer. We strongly believe that no one should battle mesothelioma alone, so now patients, family members, advocates and caregivers can show their support with a free wristband.

4. Donate to a Worthy Cause

Multiple organizations have dedicated their time and talents to advocate for the mesothelioma community. Some of those include:

This year for Mesothelioma Awareness Day, The Mesothelioma Center at Asbestos.com donated $1,000 to Massachusetts General to further the center’s research on immunotherapy and advance our understanding of the role immunotherapy can play in treating mesothelioma.

5. Call Your Representatives

Despite popular belief, asbestos is not banned in the U.S. That means people are still being exposed to asbestos every day. The very thing that causes this debilitating cancer is still impacting the lives of innocent people. We must stop this. We must fight for an asbestos ban. We urge you to call your local representatives and state senators and explain how crucial it is to ban this deadly carcinogen.

6. Share Your Story

Far too many people only know of mesothelioma from daytime TV commercials, but mesothelioma affects real people. In most cases, people are diagnosed with mesothelioma because they were exposed to asbestos on the job, but they didn’t have to be. Survivors are now able to reclaim their voice by making a difference in the lives of others living with the same cancer. By sharing your story, you can help those recently diagnosed with mesothelioma find the help and support they need.

Give Back Every Day

It doesn’t have to be a lot, but together, we can make a huge difference in the mesothelioma community by doing something small every day. Whether you share a mesothelioma-related post on Facebook or take two minutes to call your senator, you’re making an impact.

All of these small actions add up. Together, we can support the community of mesothelioma survivors and caregivers around the world, but more than that, we can fight for a world without mesothelioma.

Walking for Mesothelioma Awareness: Join iWalk4Meso

Each year, an estimated 3,000 people are diagnosed with mesothelioma, a deadly, asbestos-related cancer. It has long been considered incurable, but thanks to amazing mesothelioma researchers and specialists around the world, a cure may finally be closer.

This year, numerous medical advancements have changed the face of mesothelioma treatment. Survivors are living longer than ever before. New therapies available are greatly improving patient quality of life and extending survival time. This is all because of the many mesothelioma researchers who have dedicated their lives and careers to this entirely preventable cancer.

Now, people and organizations are coming together to give back to mesothelioma research.

As a rare disease, mesothelioma is extremely underfunded. Without these funds, researchers and specialists are unable to run clinical trials and studies that could further our understanding of this debilitating cancer and ultimately lead to cure.

That’s why Weitz & Luxenberg — a leading mesothelioma and asbestos law firm — began iWalk4Meso, a virtual race leading up to Mesothelioma Awareness Day.

According to the event website, the goal is to “raise awareness and money for research so that we can stop this horrible disease from killing our loved ones. People usually get mesothelioma after being exposed to asbestos…Anyone who has hobbies where they are exposed to asbestos, can get it. Maybe you know an uncle or grandfather, a cousin, even your own father or a brother who had mesothelioma.”

Making a Difference One Step at a Time

This marks the second year of the digital initiative allowing people from around the world to make a difference in the lives of mesothelioma survivors. It doesn’t matter where you are. It doesn’t matter what you do. To participate in iWalk4Meso, you only have to do just that: Walk.

Participants are asked to walk or run any distance they want, snap a photo holding the iWalk4Meso sign and share it on Facebook. For every post on that page, Weitz & Luxenberg will donate up to $25,000 for mesothelioma research.

All of us at The Mesothelioma Center are walking as much as possible leading up to September 26. Then, on Mesothelioma Awareness Day, we plan to come together and walk in honor and memory of the many people affected by mesothelioma.

In addition, we donated $1,000.00 to Massachusetts General Hospital, the recipient of all funds raised throughout iWalk4Meso. We hope this donation can bring us closer to a cure for this rare cancer.

iWalk4Meso Asbestos.com Team

iWalk4Meso is a virtual race aiming to fight for a world without mesothelioma. If we all come together, we can end mesothelioma.

If walking is not your thing or if you’re looking for another way to give back on this important day, people are welcome to donate directly to the highly acclaimed hospital on their fundraising site.

Why Support Massachusetts General Hospital

All of the funds generated by Weitz & Luxenberg’s iWalk4Meso campaign will go directly to Massachusetts General Hospital.

Researchers at its Vaccine and Immunotherapy Center are studying new ways to utilize immunotherapy to treat cancer — a new treatment mode that has shown promise for mesothelioma patients.

“The money we raise through iWalk4Meso will help accelerate this research. Hopefully, prolonging the lives of mesothelioma victims and enhancing the quality of their remaining years,” the website says.

Ready, Set, Step

There’s still time for everyone to get involved in this important initiative. We urge you to join us on Tuesday, September 26 — Mesothelioma Awareness Day — to walk for the many people affected by this cancer.

We ask you to walk for the people we love: Our moms and dads, aunts and uncles, husbands and wives, grandparents, children and grandchildren. We will be walking for them — and for you.

‘My Glass Is Always Half Full’

Peritoneal mesothelioma survivor F.X. Dickert doesn’t have time to die. His schedule is already full.

Dickert, 66, will undergo aggressive surgery in October for the third time in the last two years, and he’s approaching it with the same energy and optimism he had for the previous two operations.

“I’m already supposed to be dead, according to the doctors who I saw first, but I’ve still got a long list of things to do yet,” he said. “I’ve got people to see, places to go. My glass is always half full. That’s not going to stop now.”

Dickert, who lives near Madison, Wisconsin, will soon undergo another cytoreduction and a second round of hyperthermic intraperitoneal chemotherapy (HIPEC), expecting to stop the latest tumor growth and lead to another quick recovery.

Then the fun will resume.

“I plan to sell the house and buy a big fancy RV to travel the country with my canoe and my girlfriend. I want to do the Alaska Highway (which is 1,387 miles in length) in the summer, go south in the winter,” he said. “I’m also thinking of going to Greenland, Russia, Latvia and doing a Copenhagen cruise. We’ll have a good time.”

Immunotherapy Clinical Trial in Chicago

Somewhere along the way, Dickert will enroll in an immunotherapy clinical trial with mesothelioma specialist Dr. Hedy Kindler at the University of Chicago Medical Center — schedule permitting, of course.

There is also a safari in South Africa on his to-do list and another fly-in canoe trip to northwest Ontario, where in past years he has come face to face with black bears, caribou, moose and golden eagles.

“My original plan was to get past my dad’s death age [of 83], but whether I can accomplish that now is another thing,” he said. “You’ve got to have lofty goals. I’m hoping that as time goes by, they will be getting better, more effective medicines. I’m hearing good things about this clinical trial and how much it has helped people lately.”

He forgot to mention the road trip he already scheduled with three other couples for the Nebraska-Wisconsin college football game Oct. 7 in Lincoln, Nebraska or the fishing trip on the Salmon River in Ontario with two of his sons.

Yes, he plans to stay busy.

“Once he gets back on the right track, you could have a pretty good success story,” said his girlfriend, Leslie Merar-McCloud. “Mesothelioma has him down a little bit now, but he won’t give in, and he won’t give up. He’ll be back.”

Fortune and Mental Toughness Helped His Journey

Dickert is fortunate to have the financial resources that allow him to still enjoy the adventurous lifestyle he loves. He rarely sits still. His pace may have slowed, but his desire has not.

He and Merar-McCloud credit his survival to mental toughness. This summer was exhausting as he recovered from an intense radiation regimen and internal hemorrhaging, which prevented him from enrolling in the clinical trial. Yet he continues to persevere.

“My strength and energy level are down right now, but those will come around. It just won’t be overnight,” he said. “I plan ahead for what I want to accomplish each day. That helps a lot. Set a goal to do something physical each day. Mulch the beds, trim the shrubs, something. If you don’t expect to do something, then you’ll accomplish nothing.”

Dickert still owns and helps manage a successful industrial paint contracting business that has been in the family for three generations. It employs more than 450 people.

“I’ve been very, very fortunate in a lot of ways throughout my life,” he said. “My sister is a nurse who has helped me through this ordeal. My girlfriend has been great, my grown children, too. This has been the biggest challenge in my life, but I’m going to get through it.”

Dickert was diagnosed in July 2015 when he returned from a trip to Canada, first thinking it was only a painful hernia from carrying his canoe for too many hours.

He had been taking trips to the Canadian outdoors his entire adult life. This summer was the first time in 40 years he didn’t make it.

After considerable testing, doctors eventually diagnosed him with peritoneal mesothelioma, which was spreading throughout his abdominal cavity.

He believes it was caused by asbestos exposure on a job site in the mid-1970s.

“The original doctor told me I had three to six months to live, maybe nine months if I was lucky and the chemotherapy worked. He said, ‘You’re toast. Go spend time with your family. There is really nothing else you can do,’” Dickert remembers. “I couldn’t believe it. I just told him, ‘I’m not toast yet.’”

Importance of Second Opinions

With wonderful support from friends and family, and the money to do it, Dickert traveled to find mesothelioma specialists around the country, getting second, third and fourth opinions. He wanted to know everything.

He settled on Dr. Kiran Turaga, a peritoneal specialist, for the first two surgeries. Turaga works with Kindler, whose own father died of mesothelioma.

“I’m lucky because I could afford to do this, but a lot of people can’t. It’s a good example, though, of why you need to look around and get other opinions,” he said. “Be your own advocate. A lot of people just think their one doctor is like a god and the final word. But that’s just not the case. I kept looking until I found the best.”

The first and second surgeries did not stop him. He and Merar-McCloud traveled extensively in 2016 after his speedy recovery, visiting Hawaii, Australia, New Zealand and New Mexico.

Sitting still has never been an option. When he sells his home near Madison, he will be moving his base to central Wisconsin, where he already keeps a 300-acre ranch bordered by two lakes and filled with wildlife. There is considerable work to do there.

“I’m not going anywhere anytime soon,” he said. “Anytime you start to feel down about everything, you have to go to what makes you happy. And for me, that’s keeping busy.”

Loyola’s Unique Mesothelioma Tumor Board

When Dr. Wickii Vigneswaran returned to Loyola University Health System as director of thoracic surgery in January 2016, his intent was to build a mesothelioma specialty center that was second to none.

He is well on his way. They have put together a multidisciplinary staff with the interest and expertise in treating pleural mesothelioma cancer.

One of the first things his group talked about early in the process was having a mesothelioma tumor board that met regularly to discuss each case, and how best to individualize the treatment.

This has worked exceptionally well, providing a huge benefit for their patients, and ensuring they are getting the best care possible.

The Mesothelioma Tumor Board Process

Every two weeks, they bring together a multidisciplinary group of mesothelioma cancer specialists to discuss each case individually. This week, they discussed three mesothelioma patients.

In the meeting room are medical oncologists, thoracic  surgeons, pathologists, radiologists, physician assistants, nurses, researchers and anyone involved in taking care of these patients — either upfront or behind the scenes.

Each case is presented individually, all imaging and pathology reviewed, and everyone provides input, offering different levels of experience and from different perspectives.

All the bases are covered. The doctors talk about why we’re doing certain things, and why they’re not doing other things, what’s working and what’s not working.

Key to Individualized Treatment

The philosophy is that this is not a one-size-fits-all disease. You can’t paint it with a broad brush. You have to individualize the treatment. You find the ideal treatment for that particular patient. You do that through collaboration, by thinking outside the box a little in some cases. That’s what the tumor board is about.

Doctors will challenge each other in these tumor board meetings. Why this surgery, and why not that surgery or medical treatment? It’s a very collaborative group without a lot of egos involved. At least I hope the egos aren’t involved. The exchange of ideas and opinions is a good thing.

Part of the meeting, we also talk about research, and what we can do. Why does this work? Why does this not work? What can we do to improve it? Everybody comes away with something. The patient benefits the most.

This tumor board meeting is specifically dedicated to patients with mesothelioma, and it’s unique to Loyola University Medical Center at the Cardinal Bernadine Cancer Center, where the motto is: “We also treat the human spirit.”

Without it, at other places, the patients often are just being selected to fit into certain protocols. There is no individualization. It’s not always what’s best for the patient.

Sometimes, they’re discussing data on a patient before they even see him or her. They have this discussion usually before they start treatment. In many centers, just the treatment is based on one opinion.  An oncologist starts the patient on chemotherapy, and then decides on a biopsy or surgery because the treatment is not working.

With our tumor board, they look through all the information first — as a group — before they start with a treatment plan.

Patients will typically come on Tuesday or Thursday when they can be seen by everyone involved. The doctors meet to discuss the case before or after to determine what’s best for the patient.

They have the expertise here. It’s absolutely imperative for a patient to find that. It’s amazing sometimes how little a lot of people, even in the medical profession, know about mesothelioma.

Importance of a Mesothelioma Specialist

People will advertise that they treat mesothelioma — everyone thinks they are an expert in the field — but that is not necessarily true. That’s a real problem.

Vigneswaran has performed more than 200 surgeries for mesothelioma patients.

For mesothelioma, you have to be properly trained and develop the expertise to do it well, and the opportunity to train well in this field is limited, unlike lung cancer.

His team is proud of what they’ve accomplishing here. The tumor board is part of that.