CAR T-cell Recovery

It's vital that patients be carefully monitored for the side effects of CAR T-cell therapy.

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Follow-up care after CAR T-cell therapy

You will need to remain close to your medical center for at least four weeks after CAR T-cell therapy.

  • Complications can develop that may be severe, even life-threatening.
  • You will visit the outpatient clinic frequently to be checked for side effects.
  • It may be necessary to re-admit you to the hospital to treat complications.

Your dedicated caregiver will be trained to monitor you at home for potential problems.

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

  • you will feel very tired
  • you may not have much of an appetite
  • you will not be permitted to drive a car or operate heavy machinery for at least eight weeks after treatment because CAR T therapy can cause sleepiness, confusion, weakness, and temporary memory and coordination problems

What are the side effects of CAR T-cell therapy?

In the first few weeks following the infusion of CAR-T cells, the CAR T-cells will rapidly multiply in your body, building an army of cells that will detect and fight your cancer cells. During this time, you may experience several side effects.

Two major side effects your healthcare team will carefully watch for are ​cytokine release syndrome (CRS) and ​neurotoxicity (also known as ICANS)

Cytokine Release Syndrome (CRS)

Cytokines are proteins that are normally released by immune system cells to communicate with each other. When an army of CAR T-cells attack cancer cells, they release a large number of cytokines into the body which can cause serious health problems. This is called cytokine release syndrome (CRS).

Cytokine release syndrome occurs in most patients after CAR T-cell therapy.  It can begin within a few hours, days or weeks after treatment.

Symptoms may include:

  • fever (100.4°F/38°C or higher)
  • chills/shaking
  • low or very low blood pressure
  • low white or red blood cell count
  • dizziness/lightheadedness
  • fast or irregular heartbeat
  • difficulty breathing/shortness of breath
  • severe nausea, vomiting, diarrhea
  • severe muscle or joint pain
  • loss of appetite
  • low oxygen levels
  • swelling or fluid retention
  • significant fatigue

Your healthcare team will give you IV fluids and/or medications to manage fevers or blood pressure changes, and oxygen if you have shortness of breath.

If your cytokine release syndrome is more severe, you may need to be treated in the intensive care unit and given a drug called tocilizumab (Actemra®), which is quite effective in managing this problem. Steroids or other medications may also be added if tocilizumab, alone, is unable to resolve the problem.

You will be closely monitored until all symptoms of cytokine release syndrome end. This usually takes a few days but can also take longer.

If not detected and treated promptly, cytokine release syndrome can be life-threatening.

Neurotoxicity/ICANS

Neurotoxicity (also called immune effector cell-associated neurotoxicity syndrome or ICANS) is damage to the brain or nervous system. It is common after CAR T-cell therapy and is usually temporary.

Neurotoxicity typically occurs a week or so after treatment, although it can occur weeks later as well. It almost exclusively develops in patients who have had cytokine release syndrome.

Symptoms of neurotoxicity may include:

  • headaches, which may be severe
  • difficulty speaking, slurred words, stuttering
  • confusion/delirium
  • anxiety
  • difficulty staying awake
  • dizziness
  • difficulty paying attention
  • loss of coordination
  • weakness/shakiness
  • changes in handwriting
  • seizures
  • swelling in the brain
  • memory loss
  • hallucinations

Depending on the severity of the neurotoxicity, your healthcare team may use supportive care to keep you comfortable until the problem resolves or give you medication to control it. The most common medication is steroids. In severe cases, you will be monitored and treated in the intensive care unit.

Although the symptoms of neurotoxicity can be frightening for you, your family and friends, they usually are fully reversible. However, it can take days, weeks or even months for a patient to return to normal. In rare cases, neurotoxicity is life-threatening.

Other side effects of CAR T-cell therapy

In addition to cytokine release syndrome and neurotoxicity, some patients experience:

  • prolonged low blood cell counts
  • severe fatigue
  • brain swelling (very rare)

A low white blood cell count weakens your immune system and increases your risk of developing a serious infection. A low platelet count increases your risk of bleeding. 

Until your blood counts recover, you may need:

  • blood or platelet transfusions
  • growth factors - medicines to stimulate blood cell production
  • intravenous infusions of immunoglobulins (IVIG) to help your body fight infection
  • medicine to prevent infection

These problems usually resolve within a few weeks to months following CAR T-cell therapy. However, in some patients, these problems may persist for several years.

Severe fatigue can occur after CAR T-cell therapy and may take weeks or months to resolve. You may need physical therapy to regain your strength, stamina and stability. Safe exercise, such as daily walks, can also help build stamina and strength.

NEXT: Medical Centers Offering CAR T-Cell Therapy​

Reviewed January, 2020 by Alix Beaupierre RN, BSN, OCN; Michael Bishop MD; Nelson Chao MD; Kevin J. Curran MD; Michael J. Frigault MD; Ajay Gopal MD, FACP; Mark Juckett MD;  Kenneth Miller MD; Steven Pavletic MD; Miguel-Angel Perales MD; Michael Pulsipher MD; Craig S. Sauter MD; John R. Wingard MD

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