CAR T-Cell Therapy and Your Follicular Lymphoma

Medically Reviewed by Laura J. Martin, MD on April 03, 2022
3 min read

Chimeric antigen receptor (CAR) T-cell therapy is one of the newer treatment choices available for certain cancers. CAR T-cell therapy treats your cancer by using your own immune cells -- white blood cells called T cells. Scientists modify them in a lab so they can find and kill cancer cells.

Who qualifies?

The FDA has approved CAR T-cell therapy as a treatment for transformed follicular lymphoma, a rare situation where follicular lymphoma changes into a faster-growing, more aggressive type of lymphoma such as diffuse large B-cell lymphoma. This only happens in 2-3 cases out of every 100. CAR T-cell therapy has also been approved for the treatment of follicular lymphoma that has relapsed or has not responded to at least two previous lines of therapy.

Doctors don’t yet use CAR T-cell therapy as a first-line treatment. But if your cancer hasn’t responded to two systemic therapies (treatments that go through your bloodstream) first, it may be the next logical step.

How do I access treatment?

CAR T-cell therapy is highly specialized treatment. It’s available only at a limited number of cancer centers with specific expertise in cellular therapy.

In order to start CAR T-cell therapy, you’ll need a referral from an oncologist who can confirm your diagnosis and the treatments you’ve already tried. Once you have that, you’ll need to travel to the cancer center that can offer the treatment to you.

You’ll also get certain tests and screenings to be sure you’re a good candidate for it.

Because CAR T-cell therapy is still new, your insurance company may or may not cover it. Typically, insurers review each case to decide whether it’s eligible for coverage.

Side effects to consider

When deciding whether CAR T-cell therapy is right for you, your doctor will go over the side effects that you may have. Some are serious and may be life-threatening.

You may have cytokine release syndrome (CRS) as a result of your treatment. This can cause:

  • High fever
  • Extreme fatigue
  • Trouble breathing
  • Sharp drop in blood pressure

You may also have neurotoxicity, or damage to your brain and spinal cord. This can happen around 6 days after the procedure and last for 3-10 days before it gets better. You may just feel confusion from neurotoxicity, or you may have more severe symptoms such as:

  • Tremors
  • Headaches
  • Loss of balance
  • Trouble speaking
  • Seizures
  • Hallucinations

Your risk of infection goes up when you’re on treatment, too. CAR T-cell therapy can kill some of your immune cells that take care of germs, so when you have fewer of those, your chances of getting sick go up.

Your care team will help you manage these symptoms.

Also important to consider: During your recovery, you’ll need to have a caregiver to help with the process. For the first month, your cancer center may require you to stay within 2 hours of the facility for regular follow-up care. You may have to go to the hospital to deal with certain complications. You may also feel tired and have a low appetite during your recovery.

Talk with your doctor

Talking through your options with your oncologist is key to making the right decision for you. Ask questions and take notes as you weigh the pros and cons of CAR T-cell therapy for your cancer. You can ask:

  • What is the treatment process like?
  • Will I have to stay in the hospital before, during, or after treatment?
  • How many treatments do I need?
  • What are the risks for me?
  • What are the most common side effects, and how do I manage them?
  • How do I find out if my insurance will cover it?
  • Do I have alternatives to CAR T-cell therapy?
  • What are the goals of the treatment?