Is Participating in a Lymphoma Research Study Right for Me? | MyLymphomaTeam

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Is Participating in a Lymphoma Research Study Right for Me?

Written by Kelly Crumrin
Updated on July 7, 2021

  • The goal of clinical research for lymphoma is to find safer and more effective treatments than the standard treatments currently in use.
  • Partner with your oncologist to determine whether a clinical trial may be right for you.
  • Participation in clinical trials might help researchers find new and better treatments.

Clinical trials may present an opportunity to access new forms of care while improving scientific knowledge about lymphoma. Whether you have Hodgkin lymphoma or non-Hodgkin lymphoma (NHL), whether you are recently diagnosed, in remission, or facing a relapse, there may be a clinical trial that could be a good option for you. As one MyLymphomaTeam member wrote of their decision to participate in a research study, “The way I look at it, I get the trial treatment, and the researchers gain knowledge, which gets passed down to future patients.”

Many factors are involved in the decision to join a research study. Since your lymphoma specialist has detailed knowledge of your condition, they are the best person to help you understand your options and whether participating in a clinical trial may benefit you.


Beyond Standard-of-Care Treatment

In clinical trials for cancer, placebos are only used in cases where there is no standard treatment, or in addition to standard treatment. Participants who do not receive the trial treatment receive treatment that’s considered standard of care — widely used and accepted as proper.

If your lymphoma might benefit from other treatment options, participation in a research study may benefit you. While health insurance only pays for standard-of-care treatment, the sponsor of a clinical trial generally pays for any treatment that’s considered to be beyond the standard.

Access to New Lymphoma Treatments

Just a few of the novel lymphoma treatment approaches currently under study in clinical trials include:

Immunotherapy approaches, such as targeted therapies that deliver anticancer medications directly to lymphoma cells
Adoptive cell techniques such as CAR-T cell therapy, which “trains” your immune system to attack cancer cells
Cancer vaccines that provoke an immune response against cancer cells

The treatments being studied in clinical trials involving people with lymphoma are not yet approved by the U.S. Food and Drug Administration (FDA). However, they have demonstrated promising results in early trials.


Quality of Life

Some research studies do not focus on new drugs but on other interventions that may improve quality of life or help manage side effects of treatment. If your current lymphoma treatment regimen is effective but you struggle with side effects or other quality-of-life issues, there may be a trial aimed at helping people in your situation.


Difficult-to-Treat Cases

For some subtypes of lymphoma, a clinical trial may present the best treatment option. Treatments are being developed in clinical trials aimed at improving the prognosis for types of lymphoma that are high risk and difficult to treat. One MyLymphomaTeam member wrote about their decision to join a clinical trial: “I have two proteins that often hide from the R-CHOP chemotherapy regimen, so I hope the investigative medication hunted out the bad cells in these problem areas.”


Close Monitoring

Participants in clinical trials typically undergo extra testing and assessments compared with nontrial participants. This close degree of health care supervision helps researchers monitor the effectiveness of the treatment and any potential side effects. “Because I am in a clinical trial, they probably do greater follow-up and testing than for a nontrial lymphoma patient,” a MyLymphomaTeam member wrote.

If you would find it reassuring to have heightened supervision on your condition, participation in a research study may appeal to you.


Stage of Disease

No matter what stage of lymphoma you have, a clinical trial may be appropriate. In fact, some doctors recommend considering clinical trials as soon as you are diagnosed with lymphoma.

Still, for those whose lymphoma has relapsed or is refractory (resistant to treatment), research studies may present additional options when conventional treatments have failed. “Clinical trials helped me when I was stage 4,” wrote one MyLymphomaTeam member. “I was so sick last year. I’m still sick, but much better. Do whatever you can.”



Helping Others

For some members of MyLymphomaTeam, participation in a clinical trial presents a chance to help others living with lymphoma. As one member wrote, “Even though I had problems with the medication, I was not sorry I participated in the clinical trial. I hope this drug helps patients in the future.”

No matter what happens in a clinical trial, everyone who participates leaves a lasting legacy of contributing to medical knowledge that may benefit countless others. If helping others brings you a sense of purpose and comfort, that’s another reason to consider participating in a clinical trial.


Get Support From Others Who Understand

MyLymphomaTeam is the social network for people with lymphoma and their loved ones. On MyLymphomaTeam, more than 12,000 members come together to ask questions, give advice, and share their stories with others who understand life with lymphoma.

Have you participated in a clinical trial? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Updated on July 7, 2021
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Kelly Crumrin is a senior editor at MyHealthTeam and leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.
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