Step 7: Recovering in hospital
Your healthcare team will check on you regularly while you are in the hospital. Average inpatient admission period is two (2) weeks but may differ depending on your clinical situation.
Explanation of side effects
- After your CAR T-cells are infused into your bloodstream, they will being multiplying and targeting your cancer cells.
- During this time, the cancer cells and some of your other cells will be destroyed and molecules called cytokines will start being released. These cytokines can ativate your immune system.
- Due to this rapid release of cytokines, serious side effects can occur hours or days after your CAR-T cell infusion, which will be explained next.
Cytokine Release Syndrome (CRS)
As CAR T-cells begin to grow and kill cancer cells in your bloodstream, they will trigger your immune system and release molecules called cytokines. When a lot of cytokines are released at once, it’s called cytokine release syndrome. This sudden flood of cytokines can make you feel sick and can cause mild flu-like symptoms, to life threatening symptoms. Most commonly, patients start feeling symptoms within the first one to three days. However, CRS can occur up to 30 days post CAR-T cell infusion.
Some of these mild symptoms may include:
- Fever (most common)
- Fatigue
- Chills
More serious symptoms may include:
- Low blood pressure
- High heart rate
- Confusion
- Difficulty breathing
- Cardiac arrhythmias
CRS can quickly change from mild symptoms to a serious condition. Your healthcare team will be monitoring you closely for any signs and symptoms of CRS. Severe CRS may require intensive care treatment (admission to the Intensive Care Unit).
It is important for you and your caregiver to be aware of the possible signs and symptoms of CRS so you can report them to your healthcare team right away.
This will help your healthcare team provide timely right treatment on time, which may include IV fluids, steroids, oxygen, and/or an infusion of a biologic medicine called Tocilizumab.
Neurologic Changes
Your CAR-T cell therapy may temporarily affect your brain and nervous system. This happens sometimes due to the cytokines and the immune system activation.
You may experience symptoms such as:
- Disorientation
- Confusion
- Drowsiness
- Trouble with speaking, reading, writing, or remembering things
- Loss of consciousness and seizure in severe cases
Neurologic changes are most common during the first week after your CAR-T cell infusion, but can happen up to eight (8) weeks after your infusion. Your healthcare team will be closely monitoring you while you remain in the hospital, but it is essential that your caregiver alerts the healthcare team after you have been discharged home.
Your CAR-T doctor, NP and nurses can help you understand these symptoms. Always talk to your healthcare team about any concerns and be sure to alert change in your symptoms that occur during or after treatment!
Low Blood Cell Counts and Infection
Your CAR-T cell therapy can cause low blood cell counts. This includes your white blood cells, red blood cells, and platelets.
When your blood cell counts are low, you may feel:
- Tired or weak
- Feel short of breath
- Bruise and/or bleed more easily
Depending on your bloodwork, symptoms, and your doctor’s decision, you may require a transfusion(s) of blood products, such as red blood cells or platelets.
When you have low white blood cells, your body cannot fight off infections as easily.
If you are experiencing any of the following signs of infection, please report them to your healthcare team:
- Temperature over 38°C or 100.4 F
- Chills and/or sweats
- Redness and tenderness at your PermCath insertion site
- Diarrhea or painful anal area
- Pain or burning when peeing
- Nasal congestion
- Cough with yellow or green phlegm
How to protect yourself against infection when your blood cell counts are low:
- Regular hand washing with alcohol- based hand rub or soap and water
- Confirm with visitors that they are not sick before visiting you. Make sure they keep a mask on when visiting and are following the same hand washing as the step above
- Stay away from big crowds
- Be careful to avoid cuts and bleeding, as this can lead to infection
- Wear slippers or shoes with good grips to reduce your risk of slipping and falling
- Brush your teeth with a soft-bristle toothbrush to decrease bleeding in your gums
- After every bowel movement, make sure your rectal area is properly cleaned. If you notice rectal irritation or hemorrhoids, let your healthcare team know
- Do not use rectal suppositories or enemas
Symptoms of CRS, neurologic changes, weakened immune system, and low blood cell counts are most likely to happen within the first 30 days after your CAR-T cell infusion.
Once discharged, it is very important that you and your caregiver contact the CAR-T healthcare team if any of the following symptoms are noted.
Tumour Lysis Syndrome (TLS)
TLS happens when the cancer cells die and are broken down too quickly and the contents of the cells get released into your bloodstream.
Symptoms of TLS may include:
- Nausea
- Vomiting
- Diarrhea
- Muscle cramps or weakness
- Palpitations
- Altered level of consciousness
*Drinking lots of water and fluids can help reduce or prevent TLS.
TLS can occur one month or longer after your CAR-T cell infusion. TLS can cause organ damage and may be life-threatening. However, TLS can be treated and managed by your healthcare team.
