Suzanne Slowik is familiar with the ins and outs of clinical trials. When she learned she had an aggressive form of non-Hodgkin's lymphoma (NHL) 17 years ago, her doctor suggested she join one.
Slowik, who's 66 and lives in Rocky Hill, CT, followed the advice. When the treatment didn't help her, she joined another trial, and then several more.
Finally, she entered a study for the drug idelalisib (Zydelig) -- and it made all the difference. Now, 8 years later, she's in good health, and she runs and walks regularly. "It really has been a lifesaver," she says.
What Is a Clinical Trial?
It's a research study that takes a close look at promising new treatments that the FDA hasn't approved yet. Some trials try to find better ways to diagnose a disease, help with side effects, or improve quality of life.
Most trials for non-Hodgkin's disease now involve testing a form of targeted drug treatment or immunotherapy, says Celeste Bello, MD, a hematologist and medical oncologist at the Moffitt Cancer Center in Tampa, FL.
If a clinical trial proves a new treatment is safe and effective, the FDA may approve it.
If your non-Hodgkin's lymphoma doesn't get better with traditional chemotherapy, or only improves for a short time, you may want to consider a clinical trial, Bello says.
"Also, there are some types of NHL that are rare and don't really have good treatment options. These types of lymphomas should be treated in a clinical trial if one is available," she says.
The main benefit is that the treatment in the trial may work better than a standard one. And you'll also help scientists understand non-Hodgkin's lymphoma better, which helps other patients in the future.
The main drawback is the treatment may not work or may have side effects.
Where Do I Find One?
To see if there's a clinical trial that's a good fit for you:
- Ask your doctor.
- Contact organizations like the Lymphoma Research Foundation or the Leukemia & Lymphoma Society.
- Visit websites that list clinical trials, like clinicaltrials.gov.
- Try a clinical trial matching service, like the American Cancer Society.
- Contact an academic research center.
Slowik says her doctor told her about the clinical trial she's in now. She also reached out to the Leukemia & Lymphoma Society for guidance.
How Do I Join?
When you find a match, contact the trial's staff to get information and schedule an assessment, says John P. Leonard, MD, chief of joint clinical trials at New York-Presbyterian/Weill-Cornell Medicine.
Next, you'll have screening tests to see if you're eligible. They may include exams, labs, and imaging tests. Each trial has different standards for who can join, Bello says.
What Happens During a Clinical Trial?
The kind of treatment you get varies from trial to trial. In some cases, you may get an experimental drug or other type of treatment. It's possible you may get a placebo, a fake treatment that lets researchers compare how well the real treatment is working. But you'll always get your regular, standard treatment along with the placebo.
You may see a team of doctors, nurses, social workers, and other health care professionals. They'll monitor you closely. The researchers will look at how you respond to the treatment.
As part of her trial, Slowik takes two pills a day. Once a month, she drives to the Dana-Farber Cancer Institute in Boston for treatment and bloodwork.
What Happens After a Trial?
When it's over, the researchers may report the results in a medical journal or at medical meetings.
It varies, but here's what you may do after it ends:
- You may have follow-up visits, blood tests, and possibly CT or PET scans.
- Your treatment may be complete.
- You may be allowed to continue on the drug if it helps you.
- You may stay in touch with researchers, who continue to collect information on how you're doing, even several years later.
Slowik is still monitored as part of her trial, which began 6 years ago. The FDA approved the medication in 2014.
When Is the Best Time to Join?
"Clinical trials are available for patients at any point of their disease for non-Hodgkin lymphoma," Leonard says.
Whether you were just diagnosed, had a relapse, tried other treatments, or you have limited therapy choices, a clinical trial may be an option for you.
Each clinical trial has different rules about who can join. They may include:
- Type of non-Hodgkin's lymphoma you have
- Stage of your disease
- Your age, gender, or race
- Other treatments you've tried
Is It Right for Me?
Clinical trials aren't a fit for everyone. If you have other medical issues, like problems with your kidneys or liver or your blood count, it may not be a good choice for you.
Everyone's different, so it's best to have a careful discussion with your doctor to find the best match, Leonard says.
It took Slowik years to find the right one. But it was worth the effort. "I wouldn't be alive today without this trial," she says. "I cannot tell you how grateful I am for all this research."