Katie Kosko

Finances can become the deciding factor in which treatment a patient with cancer chooses to receive, where they receive it and if they can keep on that treatment regimen for an extended period of time.

It’s crucial for all patients to find the right treatment team and that may mean traveling further from home for days or even weeks. For patients with mesothelioma, being treated at a large academic cancer center is key since this disease is rarer than other cancer types.

Certain organizations across the country have financial assistance programs to help. For instance, Cancer

, the leading national organization providing free, professional support services and information to those affected by cancer, has a new program that exclusively offers assistance to patients with mesothelioma.

Once a patient is interviewed by phone and completes a financial application, they are eligible to receive a portion of grant money from the Mesothelioma Transportation Assistance Program that can be used for services such as air travel to a treatment facility, lodging and airfare.

Francine Shuman is thankful she qualified for this help as she has to travel from Augusta, Georgia, to Atlanta, to receive treatment at Winship Cancer Institute of Emory University, which requires driving two hours one way from her home to the cancer center, as well as staying overnight a few days in a hotel. “I’ve got bills to pay. I can’t afford it,” she says.

Shuman received a peritoneal mesothelioma diagnosis in February 2020 and after undergoing chemotherapy, she recently had surgery to remove the cancer that develops in the lining of the abdomen. She believes her cancer was caused by years of inhaling talcum powder that she used on her three daughters as babies. Talc is a mineral that can absorb moisture and because it’s found in close proximity to asbestos — a known carcinogen — in the earth, there is concern that talc can become contaminated.

After calling several organizations, Shuman finally connected with Cancer

and through the program, Shuman received a $1,000 grant for expenses. “I was told I would get the loan and I wouldn’t have to pay it back. And I just thanked the Lord because I didn’t know how I was going to get back and forth,” she says.

To initiate the process for the Mesothelioma Transportation Assistance Program, the person who received the diagnosis or a caregiver can call Cancer

’s HOPEline at 1-800-813-4673 or email Charlotte Ference, a social worker, at 

For more news on cancer updates, research and education, don’t forget to

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A new grant program offers financial assistance for patients with mesothelioma who must travel for cancer care.

Making Cents of Mesothelioma

In August 2014, Russell Lamkins was given six months to a year to live after learning he had malignant mesothelioma. More than six years later, he is traveling the country in his motor home with his wife and, although the cancer has slowed him down, he says he feels good.

Lamkins credits this success to the care he has been receiving on a clinical trial at Moffitt Cancer Center in Tampa, Florida, which is about two hours north of his home in Bonita Springs.

“(Moffitt) never promised anything. They explained that it was all experimental,” recalls Lamkins, now 74. “My wife and I went back to the cancer specialist in town and all he could say was, ‘If you want to be a guinea pig ... fine, or we can start chemotherapy next week.’”

Lamkins stuck with Moffitt and was the second patient to enroll in a clinical trial in 2016 that offered transarterial chemoperfusion, a therapy that involves delivering a high concentration of medicine to the diseased tissue lining in the lungs. He began this after his disease progressed despite standard chemotherapy and immunotherapy.

“I thought, what did I have to lose? Maybe this is the miracle drug. If not, it’s going to help someone down the line,” he says.

Mesothelioma is an aggressive type of cancer that forms in the lining of the lungs, abdomen or heart. Considered rare, the number of mesothelioma cases diagnosed in the United States is about 3,000 each year.

It’s most commonly seen in men, white or Hispanic people and those who are older. The biggest risk factor for developing mesothelioma is exposure to asbestos, a group of minerals that occur naturally as bundles of tiny fibers that are found in the earth’s soil and rocks. Those fibers become dangerous when inhaled, as abestos is a known carcinogen. People most at risk for asbestos exposure include miners, factory workers, shipbuilders, insulation manufacturers and installers, railroad workers and construction workers. Lamkins had been in construction since he got out of the Marine Corps in 1967.

“We did all phases of construction ... roofing, drywall, insulating, and then remodeling of homes which involved tearing things apart that we later found out had asbestos in it,” he says.

Other potential risk factors include exposure to zeolites, minerals chemically related to asbestos; high doses of radiation to the chest or abdomen for other cancer treatment; and a mutation in the BAP1 gene, however, this is rare, according to the American Cancer Society.

Although Lamkins didn’t experience any symptoms, people with mesothelioma may show signs such as fever, excessive sweating, fatigue, weight loss and loss of appetite. However, symptoms can vary depending on the type of disease. Pleural mesothelioma, occurring in the chest, is most common, making up 70% of cases, said Dr. Jacques Fontaine, a medical oncologist at Moffitt Cancer Center. Peritoneal mesotheliomas begin in the abdomen and, very rarely, mesotheliomas can occur in the covering the heart or in the covering layer of the testicles. For patients whose disease starts in the chest, signs may appear as shortness of breath, cough, pain inside the chest or lower back, hoarseness and trouble swallowing.

In cases where the disease arises in the abdomen, patients may experience belly pain or swelling. Francine Shuman thought her protruding belly was a sign of old age. Her belly began to swell and she dropped 20 pounds quickly. “I had all the symptoms,” says Shuman, 67, of Augusta, Georgia. Not thinking it was cancer, Shuman ended up in the emergency room from dehydration brought on by not eating because of sciatica pain. A 4-centimeter lump was discovered and a biopsy revealed peritoneal mesothelioma, which she believes was a result of inhaling talcum powder that she used on her three daughters when they were babies. “I was told that only 600 people a year get this,” says Shuman.

Talc is located in close proximity to asbestos, therefore the talc could be contaminated with asbestos fibers. In recent years, there has been controversy surrounding talcum products and cancer risk, including mesothelioma.

Receiving a proper diagnosis can be challenging for patients since mesothelioma can mimic other diseases and is often mistaken for lung cancer, according to Fontaine. “It can take four to six months at the time of presentation to diagnose.”

Patients need to understand the importance of being seen at a high-volume cancer center, where more cases of mesothelioma are seen, says Dr. Daniel Sterman, director of the pulmonary oncology program at NYU Langone Health. He suggests interviewing a few oncologists before making a decision on where to be treated.

“This is a disease for which we have no cure,” Sterman says. “Even at its earliest stages, there is no proven curative therapy but that doesn’t mean therapies aren’t effective.”

Surgery, Combination and Tumor Treating Fields

Since staging of mesothelioma is complex, patients may undergo not only a CT or PET scan, but also an MRI of the chest, lymph node scanning and exploratory surgery, Sterman explains. Three major cell types can affect a person’s treatment regimen — epithelioid, sarcomatoid or a combination of both. More than half of cases are epithelioid and these patients respond best to chemotherapy. They also have the best prognosis.

About 10% to 20% of cases are sarcomatoid, which has the worst prognosis. While chemotherapy shows little response with this type of cell, immunotherapy is proving to be effective.

The type of treatment will depend on a patient’s stage, location of the cancer, subtype, whether it has spread and performance status or level of fitness. Surgery or systemic therapy, such as chemotherapy and immunotherapy, with or without radiation are treatment options for patients. Some may also choose no therapy at all, but rather receive palliative care to improve quality of life and control pain. About 25% of patients, those who are typically older with other health issues, opt for this, explains Fontaine.

Surgery to debulk mesothelioma is aggressive. “We cut the ribs and go in to remove the lining around the heart and then rebuild it with synthetic mesh,” says Fontaine. “It takes several hours of surgery plus a week stay in the hospital and a long time to recover.”

In addition, surgery alone may not be able to completely remove the cancer. Therefore, combining surgery with chemotherapy, immunotherapy, or a combination of both, either before or after surgery should be considered, Sterman suggests.

Following her diagnosis in February, Shuman received eight chemotherapy treatments and gained 32 pounds from the steroids she was put on. “It made me depressed,” she says. “By the eighth chemo treatment I could barely walk. This broke me down. I didn’t want to live anymore.” Shuman will soon undergo surgery to help get rid of her cancer.

“Although many patients with early-stage mesothelioma are referred for surgical resection, we still don’t know that surgical resection is the right thing to do,” Sterman says.

The MARS 2 clinical trial will examine how effective surgery is alone versus surgery and systemic therapy in more than 300 patients. Enrolling participants in the United Kingdom, researchers will investigate overall survival, safety, quality of life and cost in patients with pleural mesothelioma.

“After enrollment is complete, there will be two years of follow up so the results of the trial will be available at the end of 2022,” says chief investigator Dr. Eric Lim, a thoracic surgeon at Royal Brompton Hospital in London. “We don’t know if there is any benefit to the operation and that’s why this trial is important.”

Most exciting in the treatment of mesothelioma is the October approval by the Food and Drug Administration (FDA) of Opdivo (nivolumab) and Yervoy (ipilimumab), two types of immunotherapies, to treat adult patients with malignant pleural mesothelioma that can’t be removed by surgery — the first regimen approved for mesothelioma in 16 years.

The approval was based on the findings of a phase 3 clinical trial that included more than 600 patients who either received the immunotherapy combination or standard of care chemotherapy. Researchers saw a median overall survival of 18.1 months with the combination compared with 14.1 months with chemotherapy. The two-drug combination also reduced the risk of death by 26%.

“So far these are the most impressive results achieved,” Lim says. “All the other treatments have shown to be ineffective, so to reduce the risk of death by 26% is huge.”

Immunotherapy is an attractive option as it may have fewer side effects than chemotherapy. Patients who receive it have less vomiting and fewer kidney problems. It also doesn’t require a patient to sit for hours in an infusion center. However, patients who have immune diseases, such as arthritis, lupus and thyroid disease, can’t receive it.

In addition, data from the phase 2 DREAM trial based in Australia is promising for patients with pleural mesothelioma. In more than 50 patients, immunotherapy combined with chemotherapy was superior to chemotherapy alone.

The phase 2 clinical trial that Lamkins is part of was presented during the Society of Interventional Radiology 2020 Annual Scientific Meeting. Interim results of the study showed a median overall survival rate of 8.5 months, a disease control rate of 70.3% and minor side effects, such as mild nausea, with transarterial chemoperfusion.

A potential new second- or third-line treatment option is being studied in the form of gene therapy. The INFINITE trial is looking at an investigational drug in combination with anti-inflammatory and chemotherapy drugs. The therapy is called Adenovirus-Delivered Interferon Alpha-2b, and in earlier clinical trials it extended patients’ lives by 17 months. “This is what I’ve been working on for the last almost 25 years of my career ... what are other ways to stimulate immune responses which can synergize with chemotherapy and immunotherapy,” Sterman says.

There also is excitement in Tumor Treating Fields (TTFields), which uses low-voltage electricity to prevent the cancer from growing. It’s FDA approved in combination with Alimta (pemetrexed) with cisplatin or carboplatin. “It’s like a magnet. These electrical currents screw up polarization and the cells can’t grow or duplicate,” Fontaine says.

Chimeric antigen receptor (CAR)-T cell therapy and PARP inhibitors are being explored for the treatment of mesothelioma, but these clinical trials are very early.

“There has been tremendous scientific progress. Although we don’t have a cure, I remind patients that for people with high blood pressure, rheumatoid arthritis and diabetes, we don’t cure those diseases either,” Sterman says. “We manage them. We turn them into chronic diseases. We can prolong and improve quality of life with these advances.”

Despite feeling beat down by chemotherapy, Shuman remained positive for her daughters, 13 grandchildren and one great-grandchild. She also turned to her faith. “I believe in the power of prayer. I always have,” she says. “Had I known these were symptoms of cancer, I would have seen my doctor sooner.”

Lamkins continues to travel, hitting all but two of the 50 states — Hawaii and Alaska — and changed his diet by eating organic and eliminating sugar. His goal is to outlive a man who lived for 11 years after a mesothelioma diagnosis. Plus, Lamkins joked, “I have a list of stuff that my wife tells me I have to get done, so as long as I have a list, I’ve got to keep chugging along.”

Patients with mesothelioma are living longer thanks to new drug combinations – including the first FDA-approved regimen in 15 years.

New Drug Combinations Are Helping Patients With Mesothelioma Live Longer

Hope, knowledge and direction. Bonnie Addario’s goal is to make sure every newly diagnosed patient with lung cancer has all three to empower themselves and their caregivers.

In 2004, Addario received a stage 3b lung cancer diagnosis. As a wife, mother and grandmother, she didn’t want to give up — despite being given a 16% chance to live. For months, she received a chemotherapy regimen weekly and radiation daily to shrink her tumor.

Then she underwent a 14-hour surgery performed by three surgeons — thoracic, heart and vascular — each taking his turn along the way, followed by more radiation. Addario was then declared cancer free. Two years later, she was invited to speak with others like herself at a support group — and what she saw was life changing.

“Picture a large room with gray walls, gray carpeting, gray drapes and gray folding chairs positioned around a gray, oblong table — everything looked gray beneath the dull lighting. Even the people sitting there before me appeared gray. Nobody was living in that room,” wrote Addario in her upcoming book, “The Living Room: A Lung Cancer Community of Courage.”

“Instead of offering the support they’d come for, this place only reinforced the fact that they were dying. A support-group setting should be a place where patients come to live, not die.”

The book has been a life project for Addario, who is all about taking a personal approach to cancer care. Throughout the pages of her book, readers get to know 21 people who have survived advanced lung cancer, including a husband and wife both diagnosed with lung cancer, a man who rode 3,400 miles on his bike in honor of his mother who died from the disease in 2017 and a young woman who fought for her life after having no risk factors or family history of lung cancer. Their stories tell how they managed to find the courage, resources, spirit and faith to keep momentum while fighting a devastating disease.

Addario also shares in the book very personal details of her life and diagnosis, along with words of wisdom from some of the world’s leading lung cancer experts on various topics such as screening.

After that support group, Addario also realized that she wanted to create a cheerful place for thrivers to come together. And she did just that, developing a real-life Lung Cancer Living Room that offers education and support and has helped countless patients with lung cancer find hope.

“They are my new heroes, the very definition of what it means to be brave,” wrote Addario, a fierce advocate for lung cancer survivors through the GO2 Foundation for Lung Cancer. “They don’t give in and they don’t give up, men and women who come to the Living Room hopeless and leave hopeful. So come right in. Join us and make yourself comfortable. Our session is about to begin.”

Bonnie Addario, a 16-year lung cancer survivor, shares a message of hope and invites you to ‘The Living Room.’

All Are Welcome: A Real-Life Lung Cancer 'Living Room'

most kids are trying to snag another snack from mom and dad and figuring out how they can stay up past their bedtime. But for Melody Lomboy-Lowe, her youth was spent in and out of the hospital receiving chemo cocktails to help her fight acute lymphoblastic leukemia (ALL).

It was the 1980s. Treatment wasn’t as advanced as it is now, and many children with cancer whom Lomboy-Lowe befriended didn’t survive the disease. As she grew up, facing more chemotherapy and regular scans, she felt alone.

Now 43 years old, the married mother of three boys has turned a passion project into a reality to help other cancer survivors heal. Lomboy-Lowe and her niece Gracelyn Bateman spent more than two years photographing and interviewing more than 100 cancer survivors from Los Angeles to New York City for the newly released book “Beyond Remission: Words of Advice for Thriving.”

In an interview with Heal ®, Lomboy-Lowe and Bateman, who plan to use profits from the book to purchase copies for hospitals and oncology offices, discussed what they wish to accomplish.

Heal®: How did you learn you had cancer?

Lomboy-Lowe: I was 6 years old and going to my first day of first grade. It was kind of a ritual that my mom would brush my hair in the morning. I had really long, thick brown hair. When she was brushing my hair, she saw that my lymph nodes were very swollen on my neck. She thought maybe I had an allergy, but I felt fine. So she sent me to school, and when I got home they had doubled in size. It was kind of an ongoing thing. She brought me to the doctor, but the leukemia hadn’t hit my bloodstream yet, so it wasn’t 

showing up in my blood. There was a lot of going back and forth, and my mom saying, “Please see her. There’s something wrong.” Eventually, my doctor sent us to City of Hope National Medical Center (in Duarte, California). They did a bone marrow biopsy, and that’s where I was diagnosed.

What type of treatment did you receive? And did you experience any short-term or long-term side effects?

I had three years of chemotherapy. I had chemotherapy by mouth, and then every month I would spend a week in the hospital getting chemo. The regimen had bone marrow aspirations every week until I was in remission, because I was in a clinical trial. This regimen is actually still used today. So it was a successful clinical trial for kids with cancer. I didn’t have radiation.

I was very sick. Weight loss was an issue, and I had 

learning issues because of chemo fog and not going to school as often as other kids. I think the long-term effect is my immune system is never as strong as other people.


I think that, like a lot of anxiety, which is super common with cancer patients as they call it “scanxiety,” you’re always afraid you feel a lump or a bump and you think that it’s cancer. It’s exacerbated (because) my husband is an oncologist, so I get to hear him talking to patients all the time. As far as physical effects, I was really fortunate that I was able to have children. Most of my peers (who) survived were not able to. But again, a lot of them had radiation and I did not.

Since you are immunocompromised, have you taken any extra steps because of COVID-19?

Yes, absolutely. My middle son has very bad asthma and my husband does not want to take 

chances (potentially passing COVID-19) to his patients, so we are ultra-careful. We go for walks in our neighborhood, but we don’t see friends. We FaceTime a lot and will deliver goodies to friends, but we just leave it on their porches. We mask up if we’re out.

Where did the idea to create “Beyond Remission: Words of Advice for Thriving” come from? And what do you want readers to take away from it?

: This started because when Melody was going through treatment as a child, she didn’t really know any survivors. It’s based on her wanting to be able to show people a sense of hope and that they can do it. We didn’t have Instagram back then. And right now, Instagram has such a rich community of survivors, fighters and thrivers. But it’s very different to be able to see (more than) the eyes and the faces. To hear the stories and the advice and wisdom from the journey. It just hits a little bit differently. 

What we’re hoping is that the book is not only a sense of community for them at a time where they feel isolated and alone, but also gives them hope. We have so many diverse cancer survivor participants in this book. We have (more than) 32 different types of cancer represented. We have childhood cancer survivors (who) are now well into adulthood, we have young cancer survivors and we have some (who) are in remission just in this last year.

: I don’t want them to have something heavy. There are so many books that look like novels that people have to read through just to get a little information. I wanted it to be quick and simple.

Is there a favorite quote or a story from one of the survivors that really stands out?

Melody survived acute lymphoblastic leukemia and we actually had a few childhood cancer survivors, very young ones come through with that same exact diagnosis. And to be able to see them kind of look up to her like, “Oh, I can be that someday. I can be healthy and happy.” It was a very touching thing to see not just those childhood survivors look up to her, but also to see their parents kind of have this ease about them like, “OK. It’s possible for my child who’s gone through so much to thrive just like this woman has.”

: One of the little girls (who) had ALL — her name was Brooklyn — her quote was just so simple. All she said was, “I’m glad I kicked cancer’s butt.” A lot of (the quotes) are very deep or health-oriented. Hers was just so childlike and simple.

Is there any advice you would offer to cancer survivors?

: In our book, there is one common theme with most of the survivors, and it’s “Don’t sweat the small stuff.” We gave each survivor a questionnaire and interviewed them, and almost everyone said something like that in their responses. Don’t take little things so hard because your life can be so much more beautiful if you don’t waste time. And that’s how I definitely live every day.

: I also wanted to add that this book is all about helping the fighters heal. What we found at the photo shoots and in connecting people and creating a community through this is that this was very healing for the survivors, too. Sharing your story isn’t for everybody, but for survivors who have read stories and feel like sharing, I encourage them to do so, and maybe they can pay it forward and find a safe space to share their story.

A new photography book showcases survivors with messages of inspiration.

Katie Kosko | Contributors

Making Cents of Mesothelioma

New Drug Combinations Are Helping Patients With Mesothelioma Live Longer

All Are Welcome: A Real-Life Lung Cancer 'Living Room'

Portraits With Purpose: New Book Showcases Cancer Survivors with Messages of Inspiration

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