When Follicular Lymphoma Relapses: Helpful Tips for Patients

In 2017, approximately 14,450 people in the United States will be diagnosed with follicular lymphoma,¹ the most common type of slow-growing (or “indolent”) non-Hodgkin lymphoma. Although follicular lymphoma is not curable, the 5-year survival rate for patients with low-risk disease can be as high as 90%.

However, many patients with follicular lymphoma will have a different experience, especially if their disease relapses (comes back) after successful initial treatment. According to the American Society of Clinical Oncology, in about 20% of patients with follicular lymphoma, the disease will relapse within 2 years of diagnosis, reducing their 5-year survival rate to 50%.²

Understanding Relapsed Disease

Understanding why some follicular lymphoma relapses in some patients is a critical question for researchers, Gwen Nichols, MD, Chief Medical Officer for the Leukemia & Lymphoma Society (LLS), said in an interview with CONQUER.

Gwen Nichols, MD, Chief Medical Officer for the Leukemia & Lymphoma Society (LLS)

“The majority of patients will have an excellent response to initial therapy and never need to be treated again,” Nichols says. “But there’s still a substantial number of patients who will need second and third treatments.”

Although relapsed follicular lymphoma is unpredictable, Dr. Nichols believes the key to reducing the likelihood of relapsed disease is understanding each individual case of follicular lymphoma, so that treatment options can be more personalized to each patient.

“Now that more patients are getting broader screening done, we’re finding additional abnormalities,” says Dr. Nichols. “And that information affects both the prognosis, as well as the likelihood of responding to particular types of therapy.”

While researchers are continuing to analyze this new personalized information, Dr. Nichols suggests that patients with relapsed follicular lymphoma use available resources (see Patient Resources) and make smart choices in managing their disease.

Know Your Options

Before patients with relapsed follicular lymphoma decide on any treatment plan, Dr. Nichols recommends that they get a second opinion and understand their treatment options. Patients who are not sure where to begin can use the free resources offered by the LLS Blood Cancer Information Specialists. Dr. Nichols notes that such resources can be crucial, especially for patients who need guidance on next steps.

“These information specialists are not giving out medical information, but they’re telling patients how to talk with their doctors and healthcare team, about the language, and about how to find a good second opinion,” Dr. Nichols says.

Consider Clinical Trials

Nichols believes that clinical trials are the way to advance science, especially when it comes to follicular lymphoma. “Because there are a lot of therapies available to patients with follicular lymphoma, those patients are not often involved in clinical trials,” she says. “But they should be, because that is how we will do better, and find out more information and work toward a cure.”

However, Nichols concedes that many patients are overwhelmed with the process of identifying an appropriate clinical trial. One option for patients is to conduct a search of clinical trials on www.clinicaltrials.gov, using the advanced search to narrow down the results.

In addition, patients can use the LLS Clinical Trial Support Center (www.lls.org/support/information-specialists/clinical-trial-support-center-ctsc). This one-on-one service allows patients to work with a nurse who will take the patient’s personal information, including residence, insurance, and exact diagnosis to search for trials that best fit the patient’s situation and goals.

Be Body-Conscious, in Sickness and in Health

Although there are no hard and fast rules about how to prevent the relapse of follicular lymphoma, Dr. Nichols says that a healthy immune system often goes hand in hand with a healthy body. That is, exercise and healthy eating improve the body’s immune system; making healthy lifestyle choices can help to place patients in a state of optimal health. For some patients with this disease, according to Dr. Nichols, maintaining a robust immune system is going to be a critical factor in their treatment outcomes.

“Because people with follicular lymphoma have a likelihood that they will need additional treatment in the future, the healthier they can be at the time they need that treatment, the more choices they will have in terms of what types of treatment they can get,” Nichols said.

Dr. Nichols warns that patients also need to be mindful of signs of an infection, especially during and around treatment, when the immune system is not functioning normally.

“Patients need to be alert that if they have an infection, their ability to fight it like they did 5 years earlier is not the same,” Nichols said. “Patients should be proactive, because physicians would much rather say that it’s nothing than see patients when it’s too late.”

Take the First Step

Most important, Nichols reminds patients with relapsed follicular lymphoma that they are not alone. There are many programs available, through LLS and through other organizations, that offer peer-to-peer support, online support communities, financial assistance, and more. Patients just need to take the first step in embracing all that is available to them (see Patient Resources).

References

1. American Cancer Society. Cancer Facts & Figures 2017. www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2017/cancer-facts-and-figures-2017.pdf.
2. Helwick C. Early relapse in follicular lymphoma: clinical trial data may guide management decisions. ASCO Post. September 10, 2016. www.ascopost.com/issues/september-10-2016/early-relapse-in-follicular-lymphoma-clinical-trial-data-may-guide-management-decisions.