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3 Insights from a Clinical Trial Patient

By The Leukemia & Lymphoma Society | May 25, 2024
Valerie with a shaved head standing in front of balloons

The road to finding new and better cancer treatments often includes an important step: clinical trials. For patients with hard-to-treat diseases, these studies can be superhighways to the right treatment. A clinical trial can tell oncologists whether a new treatment works, how certain cancer types affect the body, and more.  

Still, some patients worry that they’ll be seen more as test subjects than humans, or that the process won’t yield anything helpful. But in clinical trials, safety and support are paramount. For 21-year-old Valerie, joining a clinical trial was a chance to improve the odds—for herself and other patients with her type of cancer. 

In August 2023, Valerie was diagnosed with diffuse large B cell lymphoma (DLBCL). While it's the most common form of non-Hodgkin lymphoma, Valerie’s disease began in her bone marrow, which is rare. DLBCL is also hard to fully cure: patients often face relapses, and scientists aren’t sure why. About a month after her diagnosis, Valerie's doctors told her about a clinical trial at the nearby MD Anderson Cancer Center, facilitated by an IMPACT Research Grant from The Leukemia & Lymphoma Society (LLS). The trial was studying how to detect DLBCL earlier and how treatment affected patients’ cancer cells. After doing some research of her own, Valerie decided she wanted to get involved. 

On her last day of radiation treatment, we asked Valerie what she thought was important to share with anyone who's considering—or nervous about—clinical trials. 

 

1. Don’t be afraid to ask questions. 

 

When Valerie first got her diagnosis, she went on a “deep dive” online, gathering all the information she could. “There’s not a lot of research on my specific cancer type, and I was finding that weird,” she says. “I wanted to see what clinical trials there were.”  

When she spoke with her doctors about the trial at MD Anderson, she didn’t hold back on asking questions. “For me, it was about making sure the doctors respected me enough to give me the information, that they’re not brushing me off or rushing out of the room,” she explains. “My doctor sat down and did not move for 30 or 45 minutes.”  

Once the trial began, she didn’t stop asking questions—even if they felt silly. “At the first bloodwork appointment, I noticed the blood they drew had bubbles in it. I said, ‘Why does my blood look like it came out of a soda can?’” she shares, laughing. Her nurses explained it was a normal occurrence, but she felt better just having asked. 

Bottom line: there’s no such thing as a wrong question, Valerie says. “Ask every question, even if they seem ridiculous or naive,” she advises. “As long as your doctors are there, holding your hand along the way, that’s what’s important.” 

 

Not sure what questions to ask? Check out this printable list of questions about clinical trials as a jumping off point, or to bring to a doctor’s appointment. 

 

2. Clinical trials can help you—and many others, too. 

 

From both her own research and speaking to her doctors, Valerie shares, “I know medicine could not have come this far without clinical trials. They had to be done, and thanks to them, we have the treatments we have today. I thought, if I can be even a part of that, I’m happy to do it.” 

In the onboarding process for her trial, Valerie found out she was the very first patient enrolled.  “I don’t know many other 21-year-olds diagnosed with cancer, especially my type,” she admits. “So when they told me, ‘By the way, you’re the first one to sign up,’ I thought, well, it’s not so bad.” The research she would be contributing to might help deepen understanding of her cancer type—and open up new possibilities for treatment.  

The trial Valerie is enrolled in lasts five years, but she knows that’s the tip of the iceberg. “Sometimes they last ten years, twenty years. I know how broad the spectrum is and how deep the research has to be, so I was all for it,” she explains. “I just asked if I could be told whether we had success with the trial. I wanted peace of mind, to know that maybe it helped.”  

Want examples of how clinical trials have changed lives? Check out episodes of our podcast, The Bloodline with LLS, that cover new advances through clinical trials—across many types of blood cancer. 

 

3. Find out what support is available. 

 

Being part of a clinical trial didn’t change Valerie's treatment routine very much. She had her bloodwork appointments for the trial at the same hospital where she got treatment, often on the same day.  

But she knows that’s not the case for every patient. "If the doctors had said, ‘We need you to travel or stay overnight at the hospital, we need to keep you for observation’—I might have hesitated,” she admits. “It's already difficult when you’re putting up a fight for your life.” That’s why she thinks it’s crucial to talk to doctors about resources that can make things easier. For example, LLS can help connect patients to financial assistance for things like co-pays, travel costs, and more. 

“It’s important to know how you as a patient can be supported during the clinical trial,” she says. “If they ask you to travel—fair, can they compensate you for gas or a hotel? A lot of us are middle class, we’re on insurance and can barely afford the medical bills. The research is priceless. Patients should get some of that support in return.” 

 

Valerie with her head shaved standing against a wall with string lights

Making clinical trials less scary 

 

A blood cancer diagnosis is already overwhelming, and the thought of enrolling in a clinical trial might still make you or your loved one nervous. That’s okay—that’s where we can help. 

LLS’s Clinical Trials Support Center can answer the important questions that patients and their families have about clinical trials. Our nurse navigators, with expertise in both pediatric and adult blood cancers, provide free one-on-one support throughout the entire clinical trial process. A nurse navigator will create a list of potential clinical trials for your cancer type and specific situation to discuss with your healthcare team, and help you overcome barriers to enrollment. 

Want to learn more? You can also reach out to our Information Specialists, highly trained oncology social workers and nurses who can help you learn more about your specific blood cancer type, weigh treatment options, and tackle financial or social challenges that may come up.  

Clinical trials don’t have to be scary. Let LLS help.