Follicular Lymphoma: Partnering With Your Care Team After Initial Treatment

This article is for people who are living with relapsed/refractory follicular lymphoma, or anyone who wants to learn more about types of treatment available for relapsed/refractory follicular lymphoma. The goal of this patient education activity is to help you talk to and work with your doctor and healthcare team throughout the management of relapsed/refractory follicular lymphoma.

You will learn about:

• What is relapsed/refractory follicular lymphoma

• How follicular lymphoma is diagnosed and what tests may be needed to detect relapse

• How to talk to your doctor about your treatment priorities

• Types of treatments for relapsed/refractory follicular lymphoma  

• Possible side effects of treatment

• How to work with your doctor to create a treatment plan

• Questions to ask your doctor and healthcare team 

Certain medicines listed may not be approved by the US Food and Drug Administration (FDA) for [indication] but are recommended by the National Comprehensive Cancer Network (NCCN).

Relapsed/refractory follicular lymphoma (R/R FL) happens when cancer involving specific white blood cells known as lymphocytes comes back after treatment (relapse) or doesn't go away after your first treatment (refractory).

Doctors may be able to tell if you have relapsed/refractory follicular lymphoma by ordering certain tests, such as:

• Imaging scans (PET, CT)

• Blood work

• A biopsy of the lymph node, where your doctor looks at some of your tissue

These tests can help make treatment decisions clearer for your specific situation.

There is no standard way to treat relapsed or refractory follicular lymphoma. It will really depend on a number of different factors that your doctor will take into account, like:

• Your past treatments

• How long you were in remission

• Your age

• Your overall health, symptoms, and preferences

The different treatment options include:

• Chemotherapy: uses drugs to kill cancer cells

• Immunotherapy: helps the body's defenses fight cancer

• Targeted therapy: targets specific molecules in cancer cells to stop their growth

• Radiation therapy: uses ionizing radiation to kill cancer cells

Different treatments may include medicines that are:

• Taken by mouth (orally) such as pills or capsules that you can take at home

• Injected through a vein using an IV (intravenous) line for quick entry into your bloodstream that you can take at your doctor’s office

• Injected under the skin, subcutaneously (SC), with a small needle, often used for targeted therapies that you can take at your doctor’s office

Talk to your doctor about your work and home life, schedule, and preferences, to decide which treatment may be best for you.

You may experience symptoms, side effects, or lifestyle changes that can affect your quality of life: 

• Feeling tired, sick, losing hair, or having a weak immune system due to the side effects of treatment

• Emotional stress, anxiety, or sadness

• The cost of cancer treatment, medicines, and follow-up care

• Having to travel for treatment, take medicine at inconvenient times, and spend time planning

• Spending time in the hospital to receive treatment

These can make it hard to do the things you want or need to do in your day-to-day life. Be sure to have open and honest communication with your doctor and healthcare team about your treatment, any side effects, and how your quality of life may be impacted.

When discussing treatment, be open with your doctor and healthcare team about what’s important to you, especially when it comes to your own happiness.

Be sure to talk about your schedule and what you prefer. Talking about your needs and choosing your treatment together with your doctor will help you make the decision that works for you.

Create a list of questions for your medical team about treatment choices, side effects, and ways to feel better while dealing with relapsed/refractory follicular lymphoma. Talking openly helps you understand and take charge of your care.

Here are some questions to consider asking your doctor:

• What are the side effects of each treatment, and how can I manage them?

• Which treatment will still allow me to continue my daily routine and work?

• Are there treatments that are easier to take with fewer side effects?

• Will the treatment affect how I feel emotionally?

• How can I get help for any worries I have during treatment?

• When and how do I take my treatments?

Congratulations!

You have successfully completed the program Follicular Lymphoma: Partnering With Your Care Team After Initial Treatment

View Additional Materials on this topic that you may find useful:

Lymphoma Overview

Living with Follicular Lymphoma

Learning About Clinical Trials

More About Treatment