You've been diagnosed with diffuse large B-cell lymphoma (DLBCL) and gone through treatment, but now … the cancer is back. Although the initial news of a cancer's return is never easy, if you or a loved one has a DLBCL relapse or your DLBCL doesn't respond (refractory) to therapy, it may be encouraging to discover there are second-round (also called second-line or 2L) treatment options.
How Do You Know a DLBCL Treatment Isn't Working?
DLBCL accounts for 30% to 40% of all non-Hodgkin lymphoma cases. Research shows that approximately 10% to 15% of people treated for DLBCL will not respond to treatment (also called refractory) and about one-third will relapse during the first two years. For this reason, your doctor will likely monitor you frequently – typically every two to three months – for the first two years to keep an eye out for cancer's return.
These follow-up appointments may include blood tests as well as scans such as computed tomography (CT) or positron emission tomography (PET) scans. These imaging tests can show if the tumors have grown or shrunk, or if new spots appear. Biopsy (laboratory examination of tissue taken from your body) or other lab tests may show active lymphoma cells where they shouldn't be. Blood tests can reveal worsening organ function or blood counts that suggest the lymphoma is active.
Although all these tests are helpful to understand what's happening within your body, most relapses are diagnosed after the development of new symptoms and rather than being first detected from tests or imaging. Enlarged lymph nodes, night sweats, unexplained fever, and unintentional weight loss are some of the common physical symptoms that may mean DLBCL has returned.
What Are My DLBCL Treatment Options Now?
Once your oncologist has evaluated your symptoms, imaging, and lab results, they may recommend a change in your treatment plan. It's difficult to hear that your cancer has returned or is not responding to the initial treatment, but knowing you have options may inspire a more hopeful outlook. In fact, there are a growing number of therapies specifically for people with relapsed or refractory DLBCL.
According to the Lymphoma Research Foundation, treatment options depend on a number of things, including when the relapse happened and whether you are eligible for a stem cell transplant or CAR T-cell therapy. Your options for relapsed/refractory DLBCL may include:
- Stem cell transplant. This replaces damaged stem cells with healthy ones either from your own stem cells or a donor's stem cells. The idea is to restore your immune system and the bone marrow's ability to make new blood cells.
- CAR T therapy. This special form of immunotherapy makes changes to your own T cells in a lab to help fight cancer. Other T cell engager therapies activate T cells to destroy cancer cells.
- Chemoimmunotherapy. A combination of chemotherapy and immunotherapy drugs can treat certain types of cancer.
- Involved-site radiation therapy. This form of radiation therapy targets the specific area where the cancer is located.
- Targeted therapy. This uses drugs that target specific molecules that cancer cells use to survive and spread.
If your relapse happens over 12 months after your initial treatment, or you do not respond to standard CAR T therapy, there are second-line and third-line therapy options, including chemotherapy, various forms of advanced immunotherapies, stem cell transplant, and targeted therapies.
Your doctor may also talk with you about clinical trials for new R/R DLBCL therapies that are still being studied.
DLBCL Second Opinions and Specialized Care
As you enter the next phase of treatment, it's OK to expand or even make changes to your health care team. You may just want a second opinion. Gathering as much information about your relapsed or refractory DLBCL and your treatment options can give you more confidence as you move forward on your journey. To prepare for a second opinion, experts recommend:
- Bring copies of pathology and scan reports.
- Ask whether re-biopsy or molecular tests are needed.
- Ask about transplant or CAR‑T eligibility.
- Ask about clinical trials.
- Request written notes or a summary after your visit.
Embracing the Ups and Downs of DLBCL Treatment
Starting a new round of treatment can feel overwhelming. It may mean juggling more doctors' appointments, possible hospital stays, new side effects, and waiting periods for tests or CAR‑T manufacturing. It's natural for people with relapsed or refractory DLBCL to go through sadness, anger, anxiety, frustration, or other negative emotions. You may also feel physically exhausted from your previous DLBCL treatments. For all these reasons, it's important to put together a good support system of people and resources to help you navigate the challenges and share the journey. Consider these strategies:
Appoint a team captain. If you've been shouldering the decision-making process for the initial round of your DLBCL treatment as well as juggling work, household chores, and social and family responsibilities, perhaps it's time to give yourself a break. Ask your spouse, close family member, or trusted friend to help you manage day-to-day tasks, track your medical appointments, and/or handle insurance correspondence. You may find that your new "captain" appreciates being asked to step up. If you don't have a go-to for this role, divide and conquer by asking several close friends and/or family members to handle specific responsibilities or tasks.
Care for the caregiver. Also keep in mind that if your care partner was involved in your first line of treatment, they may be having what's commonly known as compassion fatigue (stress related to caregiving) and need a break, too. Having an open and honest conversation with them about their needs can go a long way to making them feel valued – and receive the respite they may require.
Talk it out. If you haven't already gotten the help of a skilled therapist, psychologist, or spiritual adviser, now might be the time. Talking about your condition with a mental health professional may help you better manage any anxiety, guilt, fear, or other negative emotions. This neutral third party can also lighten the responsibilities of your care partner if they are your go-to sounding board.
Relax and reset. Embrace stress-reducing practices that ease your mind and body such as yoga, meditation, journaling, listening to soothing music, getting out in nature or gardening, and exercise (after talking with your doctor.) Keeping a journal or gratitude diary can also be an outlet for self-expression or gaining perspective.
Seek peer support. No one can understand what you're going through better than another person who lives with relapsed or refractory DLBCL. Ask your oncologist's office if they can recommend a peer or support group for you to join, or you may find a variety of options online.
Get involved. One of the best ways to find perspective is by volunteering to help others. Choose a cause that's near and dear to your heart, or get involved in one of the many cancer-related organizations. You may even make some new friends along the way!
Moving Forward on Your Journey
Although it may be a setback, when you have relapsed or refractory DLBCL, it's important to remain focused on finding the next step in your journey. Today, there are multiple standard and emerging options for second- and third-line therapies. Keep asking questions, consider getting a second opinion, rally your support network around you, and – most of all – take good care of yourself.
Takeaways
- About 10% to 15% of people treated for DLBCL will not respond to treatment (also called refractory) and about one-third will relapse during the first two years.
- Second-line (2L) treatments have been established for people with relapsed or refractory DLBCL.
- Your oncologist will do tests and advise you on the best next step for you on your treatment journey. When in doubt, get a second opinion.
- If you're feeling stressed and discouraged about your condition, there are many ways to ease anxiety and gain perspective. Asking for help and providing self-care are important.
Show Sources
Photo Credit: iStock/Getty Images
SOURCES:
Current Oncology: "Emerging therapies for the treatment of relapsed or refractory diffuse large B cell lymphoma."
National Institute for Health and Care Excellence: "Non-Hodgkin's Lymphoma: Diagnosis and Management."
RadiologyInfo: "PET/CT."
Lymphoma Research Foundation: "Understanding Lymphoma and Chronic Lymphocytic Leukemia (CLL) Diffuse Large B-Cell Lymphoma: Relapsed/Refractory."
National Cancer Institute: "Life After Cancer Treatment."
OncLive: "Follow-Up Scans Do Little to Detect Relapse of Diffuse Large B-Cell Lymphoma."
Cancer Support Community. "Preparing for Your Doctor's Visit: DLBCL Worksheet."
Mayo Clinic: "What to do if your diffuse large B-cell lymphoma (DLBCL) relapses?"
