Follow-Up Care after CAR T-cell Therapy

After CAR T-cell therapy, patients visit the outpatient clinic frequently to be checked for potential side effects.

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Your CAR T-cell team may require you to remain close to your medical center for approximately four weeks after the infusion of your CAR T-cells.
During the first few weeks, you will visit the outpatient clinic frequently to be checked for:
  • low blood counts
  • infection
  • electrolyte imbalances
  • organ function
  • symptoms of cytokine release syndrome or neurotoxicity

Complications can develop during this time that may be severe or even life-threatening. It may be necessary to admit you to the hospital to treat these problems.

You may not be permitted to drive a car or operate heavy machinery for eight weeks because CAR T-cell therapy can cause
  • sleepiness
  • confusion
  • weakness
  • temporary memory problems
  • coordination problems.

Your family caregiver may need to transport you to and from the clinic for check-ups.

Returning Home

Approximately four weeks after CAR T-cell therapy, tests will be done to assess how well the treatment is working. These tests may include

  • a PET/CT scan
  • a bone marrow biopsy
  • additional lab tests, depending on your disease

If all is well, the outpatient clinic visits will end, and your care will be transferred to your local oncologist or primary care physician. Your local doctor will be given specific instructions about symptoms to watch for, how they should be managed, and whom to call at the CAR T-cell center if there are questions.

Ask your doctor to explain what your care plan will be after you return home. Some patients need maintenance therapy after CAR T-cell therapy, while others do not.

Recovering from CAR T-cell therapy can take several weeks or months. While your body recovers:

  • You will feel very tired and weak.
  • You may not have much of an appetite.
  • You may have problems with memory, concentration, confusion, word finding, making plans and/or staying organized.

For most patients, these problems resolve over time.

Preventing Infection

In some cases, patients continue to have low white blood cell counts for many months, which can increase their risk of developing an infection.

It is common for patients to be put on antimicrobial medications for several months after CAR T-cell therapy.

Until your immune system recovers, you should take precautions to reduce your risk of developing an infection. Your medical team will give you specific guidelines. The most important of these is frequent, thorough handwashing with soap and water before eating or preparing food and taking medications.

Be sure to wash your hands after:

  • touching catheters and wounds
  • changing diapers (if you are permitted to do so)
  • touching plants or dirt (if you are permitted to do so)
  • going to the restroom
  • touching animals
  • touching bodily fluids or items that might have come in contact with bodily fluids, such as clothing, bedding, or toilets
  • going outdoors or to a public place
  • removing gloves
  • collecting or depositing garbage

To reduce your risk of developing an infection, your medical team may recommend that you avoid:

  • crowds
  • people who have, or have been exposed to, an infection
  • gardening or digging in dirt
  • smoking or being around people who smoke cigarettes, cigars, e-cigarettes, a pipe or marijuana
  • walking, wading, swimming, or playing in ponds or lakes
  • construction sites and remodeling projects

Cleaning kitchen counters and bathrooms daily with a solution of one part bleach to 10 parts water can help eliminate sources of infection.

Ask your care team about getting the flu, shingles, and COVID vaccinations to reduce your risk of infection after CAR T-cell therapy.

Neurological Problems

After CAR T-cell therapy, some patients experience neurological problems for several weeks or months. Problems may include:

  • difficulty remembering things
  • poor concentration
  • confusion
  • difficulty finding the right word
  • difficulty planning and staying organized
  • difficulty walking and poor motor skills

Often, it’s the caregiver, rather than the patient, who first notices these behavioral changes in the patient. It helps if the caregiver writes down when the problems start and end so that accurate information can be shared with the medical team. These problems typically resolve in two to three months.

Report Problems Promptly

If you develop new symptoms or have questions, be sure to reach out to your CAR T-cell therapy team right away for help. Problems are usually easier to treat when they are caught early.

NEXT: Coping with Stress During CAR T-Cell Therapy​

Updated November 2024

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