Richard M. faced a grim outlook on life when doctors diagnosed him with mesothelioma in 2012. He had one year to live.
After undergoing an aggressive surgery, the Tennessee native turned to a targeted therapy clinical trial — and it worked. Now, he and his wife continue making the 100-mile trek to the ongoing clinical trial at the Sarah Cannon Research Institute in Nashville.Get Help Enrolling in a Clinical Trial
The 60-year-old praises that clinical trial for extending his life expectancy beyond his initial prognosis. He also knows his participation in the study provides hope for others seeking a cure for the rare, asbestos-related cancer.
I want to be as helpful as I can. Being in a clinical trial has allowed me to do that, providing information to researchers about therapies that could help patients in the future... Sure, I was hoping it could help me, but it's also rewarding when you know you're helping others, which is what a clinical trial does.
- Richard M., Mesothelioma Survivor
People are the heart of these research studies. Without brave heroes like Richard, clinical trials wouldn’t be able to develop experimental and life-saving therapies that lengthen the lives of other cancer patients, giving them more precious time with their wives, husbands, daughters, sons and grandchildren.
Despite the path of hope clinical trials pave for thousands of people diagnosed with deadly mesothelioma, there are many road blocks along the way: Few mesothelioma clinical trials, lack of funding, long-distance travel to cancer centers, low participation among patients and researchers, misconceptions and an overwhelming lack of awareness.
"With a clinical trial, you're stepping into unknown territory," Richard said. "But the choices I had were taking a known drug with a less than attractive success rate or an unknown drug to see what will happen."
Richard chose the unknown.
While traditional treatments, such as radiation, chemotherapy and surgery, greatly improve the health and well-being of some mesothelioma patients, there are others who don’t respond well to these therapies or qualify as candidates for a variety of reasons.
Dr. John Cho, radiation oncologist and mesothelioma specialist at Princess Margaret Cancer Centre in Canada, said clinical trials “are often where the newest treatments are going to be found."
Each clinical trial has a distinct, well-focused purpose, often categorized into screening, prevention or treatment. They typically give patients access to the latest experimental drugs and novel treatments, helping increase survival rates.
But there are other important benefits, too.
These studies give people a chance to play a more active role in their own health care. Many participants appreciate the opportunity to choose a new therapy from a list of clinical trials and possibly be among the first group of patients to benefit from these experimental treatments.
Mesothelioma survivor Kathy Angerman participated in a clinical trial in 2013 that stopped the growth of tumors for six months. She restarted chemotherapy in 2014. But after one year without tumors, she was forced to quit her treatment because the side effects wore her down.
"I'm not sure what I'm going to do if or when the doctor tells me the cancer is growing again," Angerman said. "That's why I wanted to find another clinical trial. Chemotherapy alone isn’t the answer."
For patients who find themselves in similar situations as Angerman, clinical trials offer hope.
When doctors diagnosed 39-year-old Michelle with mesothelioma before Christmas, aggressive surgery was not an option because the cancer already had spread. Michelle asked that Asbestos.com not use her last name.
Michelle didn’t hesitate when her doctor suggested she participate in a clinical trial. She already knew the alternative. “I just said, ‘Let’s do it.’ After all, what other choice did I have?” Michelle said from her home near Toronto. “I could sit home and do nothing, but that wasn’t an option for me. You’ve got to fight this thing.”
In February, she enrolled in a clinical trial testing immunotherapy drug pembrolizumab, also known as Keytruda, at the Princess Margaret Cancer Centre.
“I feel good right now, much better than I did when it started. I went up a flight of stairs and didn’t lose my breath like I had earlier,” Michelle said. “I felt proud of myself. It was like taking baby steps, but it was a big milestone for me.”
Florida retiree Jack Riordan participated in a phase I dose-escalation trial involving an immunotherapy antibody in 2014. A day after treatment, his body responded poorly to the drug, which sent him into near convulsions and made him feel like he was freezing. Two weeks later, he did it again and had the same response.
Still, he did it a third time, knowing how bad it would make him feel but understanding researchers would closely track his response.
"It was discouraging because his body just couldn't handle it, but it still gave him hope that this would be helping someone else," his wife, Judy, said. "That's how great of a guy he was."
Despite the bad experiences, he inquired about joining another trial, but his health worsened before he could enroll. Riordan died 15 months after his diagnosis. He was 75.
"For him, it was a last resort, but he wanted to keep trying," Judy said. "Why not try and help others — even if it won't help you. That's how he thought."
Clinical studies also may help participants feel safer during treatment. Leading cancer centers and some of the top cancer specialists in the field host mesothelioma trials. Doctors with this level of expertise offer patients some clear advantages over general oncologists who may only see one or two cases of mesothelioma during their entire career.
In addition to a full team of specialists providing quality care to patients, research coordinators keep a watchful eye on side effects and ensure the study follows all safety regulations.
Participants in clinical trials also tend to have more positive results than people who choose the standard treatment. Some key benefits include closer monitoring throughout treatment and easier access to advice and support from medical professionals.
Even when a clinical trial doesn’t provide effective treatment, some participants say they’re happy to be involved in research that will one day help another mesothelioma patient.
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ClinicalTrials.gov, a website run by the U.S. National Institutes of Health (NIH), shows 59 mesothelioma studies are currently recruiting participants at cancer centers across the nation.
This phase II trial at the University of Chicago Comprehensive Cancer Center tests the effectiveness of Keytruda, which stimulates the immune system to kill cancer cells. The drug is an antibody that blocks a protein called programmed cell death 1 (PD-1), which promotes an immune response against tumor cells. Keytruda put President Jimmy Carter’s melanoma into remission in 2015.
This multicenter trial tests the value of immunotherapy drug CRS-207, which targets mesothelin, a compound made by mesothelioma tumors. Researchers create CRS-207 by weakening and genetically modifying the bacterium Listeria monocytogenes so it doesn’t cause listeriosis, which infects the nervous system. Instead, it triggers a powerful immune response against cancer. Preliminary results show 94 percent of study participants responded positively to the drug with partial tumor shrinkage or no new tumor growth. Doctors administer CRS-207 prior to chemotherapy with pemetrexed and cisplatin.
BAY94-9343 is a new kind of immunotherapy drug that combines an antibody with an anti-cancer compound. The antibody part of the drug helps deliver the anti-cancer portion directly to cancerous cells, known as targeted therapy. This type of drug causes few side effects because it targets cancer cells, not surrounding healthy cells. BAY94-9343 is one of the few anti-cancer drugs that impacts sarcomatoid and biphasic mesothelioma cell types. This multicenter clinical trial administers the drug intravenously once a week for three weeks in a row.
This clinical trial examines the benefits of a drug that slows new tumor growth. Tumors spread by forming new blood vessels through which cancer cells can migrate, a process called angiogenesis. LY3023414 blocks angiogenesis. Mesothelioma patients participating in this multicenter trial also receive chemotherapy with pemetrexed and cisplatin.
Several clinical trials are now considered landmark studies that propelled the treatment of mesothelioma. Without these trials, doctors would still be searching for effective treatment options.
This University of Chicago trial found dual treatment with chemotherapy drugs cisplatin and pemetrexed improved survival over treatment with cisplatin alone. The combination remains the go-to approach for chemotherapy today.
The multicenter trial followed more than 400 peritoneal patients treated with surgery and Hyperthermic Intraperitoneal Chemotherapy (HIPEC), an advanced heated chemotherapy technique. The trial improved the effectiveness of HIPEC, offering a median survival of nearly 4.5 years.
A randomized trial involving 12 U.K. hospitals found the aggressive extrapleural pneumonectomy (EPP) surgery for pleural mesothelioma offered no benefit and possibly harms patients. Still, some specialists recommend this treatment, and their patients have lived longer lives because of it.
Results from these trials led to important advances in mesothelioma therapy. The pemetrexed and cisplatin trial revealed a promising survival advantage, convincing researchers to update the standard of care for mesothelioma chemotherapy.
The Mesothelioma and Radical Surgery trial (MARS) led many surgeons to forego EPP for pleurectomy/decortication (P/D), a less aggressive, lung-sparing surgery. A follow-up MARS 2 trial is now underway in the U.K. to explore the benefits of P/D for mesothelioma.
The HIPEC trial revealed the procedure’s ability to remarkably improve life expectancy, with one peritoneal mesothelioma patient still alive 19 years later.
Our team of Patient Advocates can help you find and enroll in a mesothelioma clinical trial that's right for you.Find a Clinical Trial
Despite the successes of previous clinical trials and the promising outlook of ongoing studies, researchers and patients enrolled in clinical trials face many challenges.
Whether it’s a lack of funding, low participation levels among patients and researchers or a misunderstanding of how clinical trials work, efforts must be made to ensure innovations in research continue so current and future mesothelioma patients can live longer lives.
The National Cancer Institute awarded more than $9 million in grant funding to mesothelioma research in 2013.
Breast, lung and prostate cancers generate plenty of publicity, research funding and clinical trials because hundreds of thousands of people in the U.S. are diagnosed every year with those cancers.
For example, the National Cancer Institute (NCI) shows doctors diagnosed 221,200 new lung cancer cases in 2015, and it provided more than $367 million in 2013 (year of most recent funding amount) to lung cancer researchers. There are also 2,025 clinical trials currently recruiting lung cancer patients, according to the NIH.
Unfortunately, the rarity of mesothelioma means significantly fewer clinical trials and less funding. Doctors diagnose about 3,000 new mesothelioma cases a year. The NCI provided $9 million in funding for research, and there are 59 clinical trials recruiting mesothelioma patients now.
Although there is an abundance of outstanding mesothelioma research proposals, limited funds to support them has led to historically low rates of grant approvals.
Since 1990, the American Cancer Society received 30 mesothelioma research proposal applications. It approved grants for five of these for a total of more than $1.6 million dollars. These grants funded studies investigating targeted therapies, genetic predisposition for the cancer and other topics related to treatment and diagnosis.
People have different beliefs and misconceptions about clinical trials that influence their decision to participate.
For example, people may fear that clinical trials actually benefit pharmaceutical companies more than cancer patients, or they suspect the medical system benefits more than participants.
These fears and misconceptions are completely normal and should be addressed with your oncologist or one of the researchers leading the clinical trial.
People may say they didn’t know joining a clinical trial was an option for them. This highlights how important it is to ask your treatment team about clinical trial options, especially if none of your doctors bring them up.
Sometimes people don’t enroll in a clinical trial because they are afraid their health insurance won’t cover the costs. While coverage can vary depending on the company, state and federal laws require insurers to pay for clinical trial treatment costs. Participants may still have to pay deductibles related to their standard-of-care treatment. Be sure to talk to your insurance company about what costs it will cover.
The idea of serving as a guinea pig for experimental and unproven treatments frightens some people with cancer. While clinical trials may involve uncomfortable tests and uncertainty about treatments to answer important medical questions, the vast majority of participants report positive experiences. Patients praise the high level of care they received, as well as close monitoring and round-the-clock access to medical professionals.
Michelle, who participated in the Canadian clinical trial in Toronto, debunks this myth.
“You could call me a guinea pig, but this cancer center doesn’t make you feel that way at all,” Michelle said. “They are constantly monitoring you. You can talk with someone 24/7 if you’ve got questions or concerns. You get great care. I’m a good patient for them. I’m young, healthy and have no other issues.”
Too many people believe a clinical trial is used only when all other traditional methods have failed. The truth is clinical trials are available for people at any stage of mesothelioma. Some early-stage patients may benefit from clinical trials searching for innovative ways to diagnose and detect cancer. Clinical trials have a variety of focuses, even for patients in remission.
Some patients believe joining a clinical trial is for a short period of time. While some trials may end because of a lack of efficacy, many trials become longer treatment options if they are safe and effective. On the other hand, if the treatment is not effective or makes patients unhappy or unhealthy, they can drop out of treatment at any time.
Many precautions are taken before a clinical trial opens to ensure the safety of all participants. In addition to regular medical attention and close observation from trial staff, participants will continue to be monitored by their regular physicians. Throughout the study, researchers are required to notify patients of any new risks or side effects.
Older patients are underrepresented in many clinical trials, but that is not because researchers don’t want them. Usually, it’s because many older patients are unable to travel far distances to participate. In fact, people over 60 are 10 times more likely to be diagnosed with mesothelioma than people under 40. As a result, mesothelioma clinical trials typically enroll older patients.
U.S. Department of Defense programs have awarded about $12 million to mesothelioma research.
With knowledge gained from clinical trials, researchers have developed effective cures for several cancers such as Hodgkin lymphoma and testicular cancer.
Only 5 percent of cancer patients eligible for clinical studies participate in clinical trials.
Clinical trials also drive innovation in the treatment of mesothelioma and other cancers, yet low participation rates hold back progress. The lack of volunteers is the biggest barrier to completing clinical trials, according to the American Cancer Society. Fewer than 5 percent of adults with cancer volunteer for clinical trials, compared to 60 percent of children under age 15.
Higher participation from children helped researchers uncover a cure for childhood acute leukemia and significantly boosted survival rates for other childhood cancers during the past few decades.
To see the same results with adult cancers, doctors and researchers must educate patients about clinical trials and encourage them to join if they are good candidates.
Dr. Cary P. Gross, professor of medicine at Yale University and co-director of the Robert Wood Johnson Foundation Clinical Scholars, said low participation in mesothelioma clinical trials is a problem.
“For studies to produce meaningful results, you need a large number of people involved, which is why it's so important for patients to participate if given the opportunity,” Gross said. “It's critical for a rare cancer like mesothelioma."
Every person with cancer has a unique situation, as well as their own reasons for wanting or not wanting to participate in a clinical trial. While it’s perfectly fine to forego clinical trials and pursue standard treatments, patients should ensure they are fully informed before making that decision.
Cancer centers in California, Illinois, Maryland, New York, Texas, Minnesota and Pennsylvania host the majority of clinical trials.
Mesothelioma patients living far from those states may face some challenges reaching these studies because of travel costs, or an inability to drive or travel by air.
Those living in these states may reside in cities too far from major metropolitan areas where specialty cancer centers are usually located. Angerman, who participated in a clinical trial at the University of Chicago Medical Center in 2013, lives three hours away from the center. Luckily, her son drove her to the clinical trial twice a month. But he has since moved out of the state for a new job, and it couldn’t have come at a worse time for his mother.
The Chicago medical center is now recruiting mesothelioma patients for a new clinical trial that may keep Angerman’s aggressive cancer at bay. But without her son or anyone else to drive her this time, the 72-year-old admits the distance is too great for her to navigate on her own.
Clinical trials are going to be the avenue to making progress with this disease. I think they are great. My only complaint is that they are not available closer to home. I just can’t get there,” Angerman told Asbestos.com.
-Kathy Angerman, Mesothelioma Survivor
Because of the fast-moving nature of mesothelioma, Angerman is running out of time without access to the clinical trial. “For me, I don’t think that trial is an option,” she said. “I really don’t know what I’m going to do.”
Unfortunately, there is a significant lack of awareness about new clinical trials. There are patients who don’t know trials are available, and doctors who may be unaware of mesothelioma trials near them. The uncertainty leads to low involvement in clinical trials and less of a fighting chance to find a cure.
For many general practitioners, their only mesothelioma exposure is a quick once-over in medical school. Because of the cancer's rarity and its difficult diagnostic process, many doctors may be slow to identify mesothelioma, let alone spend the time researching new treatment options available.
“Many physicians simply are unaware of clinical trials that might benefit their patient,” said Dr. Judy Stone, an infectious disease doctor who has led and participated in clinical trials. “Further, with the increasing pressure to see patients more and more quickly, they simply don’t have the time to engage in lengthy discussions with patients.”
Because of the great divide between mesothelioma research and primary care physicians, patients with the aggressive cancer may not have a chance to join a clinical trial that may extend their lives.
The solution: Increased mesothelioma awareness must be a priority among physicians, and mesothelioma patients need to seek a mesothelioma specialist for treatment.
Finding a mesothelioma specialist can make a huge difference in a patient’s diagnosis, prognosis and treatment options, including clinical trials.
Specialists will know of any possible clinical trials a patient may qualify for. "Awareness is a big problem sometimes," Cho said. "Even if a treatment is available through a clinical trial, it's almost like it wasn't even available in the first place if you can't access it."
Deciding whether a clinical trial is the right choice for a mesothelioma patient is an important decision to make, and it’s not to be taken lightly. A patient’s health care team can help explain the process and answer any questions.
There are also some important questions patients should ask themselves before making a decision. Some may be difficult to answer, but it helps to start thinking about them.
Joining a clinical trial might be the most important step a mesothelioma patient can make. It often is a leap of faith that goes well beyond one’s own best interest.
It’s what makes progress possible. It’s what fuels the engine of hope. It’s what creates the optimism for the future.
Dr. Claire Verschraegen at the University of Vermont Medical Center says one of the first things a patient tells her after she suggests clinical trials is, “You want me to be a guinea pig?”
Mesothelioma patient Michelle is one of these heroes.
“Maybe we can do something about it or at least help others in the process,” she said. “Maybe we can find something to put this thing to sleep. That’s what these trials are about.”
“And I say, ‘No, no, no. I want you to be a hero,’” Verschraegen said. “A hero is someone who puts his own life out there to help others. Someone who really gives of himself. They become heroes for trying because even if it doesn’t help them, it helps those that follow.”
-Dr. Claire Verschraegen, University of Vermont Medical Center
Joining the team in February 2008 as a writer and editor, Michelle Whitmer has translated medical jargon into patient-friendly information at Asbestos.com for more than eight years. Michelle is a registered yoga teacher, a member of the Academy of Integrative Health & Medicine, and was quoted by The New York Times on the risks of asbestos exposure.
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