You will either remain hospitalized for a short period of time or 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 will also not be permitted to drive a car for at least two weeks because CAR T-cell therapy can cause:
- sleepiness
- confusion
- weakness
- temporary memory problems
- coordination problems
Returning Home
When it is no longer necessary for you to remain close to the CAR T-cell center for frequent follow-up care, your care may be shared with or turned over to your local oncologist. 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.
During the first few months 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
Recovering from CAR T-cell therapy can take several weeks or months. While your body recovers, you may:
- feel very tired and weak
- may not have much of an appetite.
- have problems with memory, concentration, confusion, word finding, making plans, and/or staying organized.
For most patients, these problems resolve over time.
Preventing Infection
Some patients experience persistent low white blood cell counts for several months. This 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, it is essential to take precautions to minimize your risk of developing an infection. The most important of these is frequent, thorough handwashing with soap and water before
- eating or preparing food
- 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 whether you should get the flu, shingles, and COVID vaccinations to reduce your risk of infection.
Neurological Problems
Occasionally, patients experience neurological problems for several weeks or months after CAR T-cell therapy such as:
- difficulty remembering things
- poor concentration
- confusion
- difficulty finding the right word
- difficulty planning and staying organized
- difficulty walking and poor motor skills
These problems typically resolve in two to three months.
Report Problems Promptly
If you develop new symptoms or have questions, be sure to contact your care team at the CAR-T center right away for help. Problems are usually easier to treat when they are caught early.
Next Page: Coping with the Stress of CAR T-cell Therapy
