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Tips for Living with Relapsed or Refractory Lymphoma

Lymphoma is a type of cancer. It develops in a part of the immune system called the lymphatic system. Many people with lymphoma get better with treatment. However, some people have lymphoma that doesn’t respond well to treatment (refractory lymphoma) or lymphoma that comes back after being treated (relapsed lymphoma). 

“These types of lymphoma can be challenging, but there are still treatment options that can help,” said Sunil Tulpule, MD, a medical oncologist with Banner MD Anderson Cancer Center at Banner - University Medical Center Phoenix. “Although any recurrence of cancer is unwelcome, there are still many treatment options. It is important to speak with your health care team to discuss a plan of care.”

What is relapsed lymphoma? 

Relapsed lymphoma is lymphoma that returns after the signs and symptoms are reduced or gone. Lymphoma can come back in the original location or other parts of the body. Relapsed lymphoma can be resistant to treatments that worked in the past.

What is refractory lymphoma? 

Refractory lymphoma is lymphoma that does not respond to treatment as expected. It’s different from relapsed lymphoma because the signs and symptoms don’t improve much or at all. People with this type of lymphoma may need alternative or aggressive treatments. 

Treatment options for relapsed and refractory lymphoma 

“In the last five years, many new treatment options have become available that may help with aggressive lymphomas,” Dr. Tulpule said.

To treat these types of lymphomas, your health care team will review your previous treatments to try to figure out what worked, what didn’t and why. That information can guide the next steps, whether that’s modifying existing treatments or trying new options.  “Treatment is tailored individually to each person’s situation,” Dr. Tulpule said.

Your provider may recommend:

  • Chemotherapy: Combinations of chemotherapy drugs could be effective.
  • Targeted therapies: Drugs like ibrutinib or venetoclax focus on specific molecules or pathways involved in cancer growth. These treatments may help keep cancer cells from multiplying without much damage to normal cells. They may be options for chronic lymphocytic leukemia or diffuse large B-cell lymphoma. 
  • Immunotherapies: Checkpoint inhibitors, monoclonal antibodies or bispecific therapies may help the immune system recognize and destroy cancer cells. 
  • CAR T-cell therapy: Chimeric antigen receptor (CAR) T-cell therapy has shown promising results, especially for some types of aggressive lymphoma that don’t respond to other treatments. They work by engineering a patient’s T-cells to target and kill lymphoma cells. 
  • Stem cell transplant: This treatment replaces damaged stem cells with healthy ones that can make new blood cells.
  • Radiation therapy: In some cases, radiation treatment may be an option for these types of cancers.

You may also want to participate in clinical trials, which can give you access to cutting-edge therapies, new treatment approaches and opportunities for better outcomes. In trials, you may be monitored more often, so you may have a closer relationship with health care providers and a more tailored treatment experience. 

You can find clinical trials through the ClinicalTrials.gov database, cancer research centers, your health care team and major health systems like Banner Health. 

If you’re considering a clinical trial, be sure to review the study’s goals, eligibility criteria, potential risks and benefits. Your health care team can help you understand how the trial matches up with your treatment goals and overall health. 

Managing symptoms and side effects 

Symptoms might not be the same as they were when you were first diagnosed with lymphoma. With relapsed or refractory lymphoma, you may notice:

  • Swollen lymph nodes or swelling in different parts of the body
  • Significant weight loss without a clear reason
  • Fevers and night sweats
  • Fatigue or weakness, even when you’re not exerting yourself much
  • Itching in areas where you have swollen lymph nodes

“Depending on the type of lymphoma and the treatment used, symptom management must be tailored to each person’s needs. Preventive strategies can help control side effects,” Dr. Tulpule said. Managing side effects can help you maintain your quality of life.  

  • Talk to your provider about medication to treat side effects such as nausea, pain or infections. They may recommend supportive or palliative care to help you cope with challenges.
  • Consult a nutritionist to create a diet plan that supports your treatment and considers your dietary needs or restrictions.
  • Try gentle exercise or physical therapy to fight fatigue, improve your mood and maintain strength. If you’re new to a type of exercise, talk to your provider.
  • Stay well-hydrated to help manage side effects like dry mouth or dehydration.

Emotional and psychological support 

It can be emotionally taxing to deal with relapsed or refractory lymphoma. You may experience:  

  • Fear related to the uncertainty of how the disease will progress or how treatments will affect your body. 
  • Anxiety about treatment, side effects and their impact on daily life. 
  • Depression, persistent sadness or a sense of hopelessness that can affect your motivation and well-being.

Building a strong support system can help. You may want to connect with: 

  • Family and friends: Loved ones can offer practical help with daily tasks, accompany you to appointments and listen to you. Communicate with family and friends about your needs and feelings so they can support you. 
  • Support groups: Joining an in-person or online support group for lymphoma patients can provide community, understanding, emotional connection and practical advice. 
  • Professional help: A licensed therapist can help you cope with the emotional impact and address feelings of fear, anxiety and depression. Seek help if emotional challenges become overwhelming or you notice persistent sadness, trouble sleeping, difficulty concentrating or a major decline in the way you’re functioning. 

Tips for maintaining your quality of life

It’s tough to cope with a serious health condition but staying hopeful and motivated can help. Some people find inspiration in the stories of others who had positive outcomes. If that’s the case for you, look for books, blogs or videos from other survivors.

Celebrate your own achievements too, whether you’re managing your side effects or finishing some of your daily tasks.

These practical tips can help you in your everyday life:

  • Set up a daily schedule with time for treatment, rest and activities you enjoy. A structure can help your days feel more normal.
  • Include self-care activities like gentle exercise, hobbies or relaxation techniques to help manage stress.
  • Expect that some days will be better than others. Adjust your plans and rest when you need to.
  • Stay informed about your condition and treatment options. Share concerns, questions and feedback with your health care team so they can provide support and advice.

The bottom line

It can be discouraging to discover that lymphoma isn’t responding well to treatment or is coming back later. But new treatment options may help with these aggressive lymphomas and you can find ways to cope with side effects and the stress of living through cancer treatment.

To connect with experts in treating relapsed or refractory lymphoma, reach out to Banner Health.

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