Cytokine release syndrome

(May be severe)

This medication can cause your immune system to release a large amount of proteins called cytokines. This is called cytokine release syndrome (CRS) and it can make you very sick. If you have CRS, your health care team will need to do blood tests, monitor you more closely and may give you medications to treat it.

What to look for?

• Fever. Sometimes the fever can be high (more than 40ºC).
•  And, you may also have:
  • Dizziness (from low blood pressure) 
  • Chills 
  • Nausea (feeling like you need to throw up) or vomiting (throwing up)
  • Headache, new pain in your muscles or feeling achy 
  • Swelling in your face, hands, legs, ankles or feet 
  • Difficulty breathing 
  • Fast or irregular heartbeats 
  • Peeing less than usual
• CRS usually happens on the day of treatment, within minutes or hours of when treatment begins.

What to do?

• Tell your nurse right away if you feel any signs of CRS during or just after your treatment.
• If you have left the hospital, check your temperature to see if you have a fever. Read the above section “What should I do if I feel unwell, have pain, a headache or a fever?”
• If you have any signs of CRS, try to contact your health care team. If you are unable to talk to the team for advice, you MUST get emergency medical help right away.

Rash; dry, itchy skin

(May be severe)

What to look for?

• You may have cracked, rough, flaking or peeling areas of the skin.
• Your skin may look red and feel warm, like a sunburn.
• Your skin may itch, burn, sting or feel very tender when touched.

What to do?

To prevent and treat dry skin:

• Use fragrance-free skin moisturizer.
• Protect your skin from the sun and the cold.
• Use sunscreen with UVA and UVB protection and a SPF of at least 30.
• Avoid perfumed products and lotions that contain alcohol.
• Drink 6 to 8 cups of non-alcoholic, non-caffeinated liquids each day, unless your health care team has told you to drink more or less.

Rash may be severe in some rare cases and cause your skin to blister or peel. If this happens, get emergency medical help right away.

Fever, chills

You have a fever if your temperature taken in your mouth (oral temperature) is:

• 38.3°C (100.9°F) or higher at any time

            OR

• 38.0°C (100.4°F) or higher for at least one hour.

What to look for?

• If you feel hot or unwell (for example if you have chills or a new cough), you must check your temperature to see if you have a fever.
• Do not take medications that treat a fever before you take your temperature (for example, Tylenol® (acetaminophen), or Advil® (ibuprofen)).
• Do not eat or drink anything hot or cold right before taking your temperature
• You may have fever, chills and muscle pain without any signs of infection, such as a sore throat, cough or skin rash.
• It may happen at any time after you receive your treatment and it usually goes away as your body gets used to the medication.

What to do?

If your health care team has told you that you have low neutrophils:

• Wash your hands often to prevent infection.
• Check with your health care team before getting any vaccines, surgeries, medical procedures or visiting your dentist.
• Keep a digital thermometer at home so you can easily check for a fever.

If you have a fever:

If you have a fever, try to contact your health care team. If you are unable to talk to the team for advice, you must get emergency medical help right away.

Fatigue 

What to look for?

• Feeling of tiredness or low energy that lasts a long time and does not go away with rest or sleep.
   

What to do?

• Be active. Aim to get 30 minutes of moderate exercise (you are able to talk comfortably while exercising) on most days.
• Check with your health care team before starting any new exercise.
• Pace yourself, do not rush. Put off less important activities. Rest when you need to.
• Ask family or friends to help you with things like housework, shopping, and child or pet care.
• Eat well and drink at least 6 to 8 glasses of water or other liquids every day (unless your health care team has told you to drink more or less).
• Avoid driving or using machinery if you are feeling tired.

Ask your health care team for the Fatigue pamphlet for more information. 

Nausea and vomiting

(Generally mild)

What to look for?

• Nausea is feeling like you need to throw up. You may also feel light-headed.
• You may feel nausea within hours to days after your treatment.

What to do?

To help prevent nausea:

• It is easier to prevent nausea than to treat it once it happens.
• If you were given anti-nausea medication(s), take them as prescribed, even if you do not feel like throwing up.
• Drink clear liquids and have small meals. Get fresh air and rest.
• Do not eat spicy, fried foods or foods with a strong smell.
• Limit caffeine (like coffee, tea) and avoid alcohol.

If you have nausea or vomiting:

• Take your rescue (as-needed) anti-nausea medication(s) as prescribed.
• Ask your health care team for the Nausea & Vomiting pamphlet for more information.
• Talk to your health care team if:
  • nausea lasts more than 48 hours
  • vomiting lasts more than 24 hours or if it is severe

Changes in skin or hair colour

This may happen weeks or months after your tebentafusp treatment.

What to look for?

• The colour of your hair, eyelashes or eyebrows may change (get lighter or darker)
• Your skin may get darker or lighter in certain areas. This may appear patchy.

What to do?

• Protecting your skin from the sun may help prevent skin problems. Use sunscreen with UVA and UVB protection and a SPF of at least 30.
• Tell your health care team if this bothers you. Some skin colour changes may slowly go back to normal once you stop your treatment.

Mild swelling

What to look for?

• You may have mild swelling or puffiness in your arms and/or legs. Rarely, this may be severe.
   

What to do?

To help prevent swelling:

• Eat a low-salt diet.

If you have swelling:

• Wear loose-fitting clothing.
• For swollen legs or feet, keep your feet up when sitting.

Low blood pressure

What to look for?

• You may feel tired, dizzy or light-headed.
• You may have nausea (feeling like you need to throw up), vomiting or blurred vision.
• You may faint (pass out).
• It may happen during or shortly after your treatment is given to you and may be severe.
   

What to do?

• Tell your nurse right away if this happens during or shortly after your infusion. Your health care team may need to give you fluids or medication to increase your blood pressure. 
• If this happens after you have left the hospital, check your blood pressure often. Talk to your health care team about what to do if it doesn't improve.
• If you feel dizzy or unwell sit or lay down right away so that you do not fall. Try to get up and move slowly only once you feel better.
• Do not drive a motor vehicle or operate machinery if you feel dizzy.

Mild Headache, joint, muscle pain or cramps 

What to look for?

• New headache, pain in your muscles or joints, muscle cramps, or feeling achy.

What to do?

• Take pain medication (such as acetaminophen) as needed.
• Read the above section: "What should I do if I feel unwell, have pain, a headache or a fever?" before taking acetaminophen (Tylenol®), ibuprofen (Advil®, Motrin®), naproxen (Aleve®) or Aspirin. These medications may hide an infection that needs treatment or they may increase your risk of bleeding.

Ask your health care team for the Pain pamphlet for more information.

If you have a sudden, severe headache get emergency medical help right away.

Diarrhea

What to look for?

• Loose, watery, unformed stool (poo) that may happen days to weeks after you get your treatment.
   

What to do?

If you have diarrhea:

• Take anti-diarrhea medication if your health care team prescribed it or told you to take it.
• Do not eat foods or drinks with artificial sweetener (like chewing gum or ‘diet’ drinks), coffee and alcohol, until your diarrhea has stopped.
• Eat many small meals and snacks instead of 2 or 3 large meals.
• Drink at least 6 to 8 cups of liquids each day, unless your health care team has told you to drink more or less.
• Talk to your health care team if you can’t drink 6 to 8 cups of liquids each day when you have diarrhea. You may need to drink special liquids with salt and sugar, called Oral Rehydration Therapy.
• Talk to your health care team if your diarrhea does not improve after 24 hours of taking diarrhea medication or if you have diarrhea more than 7 times in one day.

Ask your health care team for the Diarrhea pamphlet for more information.

Liver problems

Your health care team may check your liver function with a blood test. Liver changes do not usually cause any symptoms.

What to look for?

• Rarely, you may develop yellowish skin or eyes, unusually dark pee or pain on the right side of your belly. This may be severe.

What to do?

If you have any symptoms of liver problems, get emergency medical help right away.

Low appetite

What to look for?

• Loss of interest in food or not feeling hungry.
• Weight loss.

What to do?

• Try to eat your favourite foods.
• Eat small meals throughout the day.
• You may need to take meal supplements to help keep your weight up.
• Talk to your health care team if you have no appetite.

Ask your health care team for the Loss of Appetite pamphlet for more information.

Constipation

What to look for?

• Having bowel movements (going poo) less often than normal.
• Small hard stools (poo) that look like pellets.
• The need to push hard and strain to have any stool (poo) come out.
• Stomach ache or cramps.
• A bloated belly, feeling of fullness, or discomfort.
• Leaking of watery stools (poo).
• Lots of gas or burping.
• Nausea or vomiting.
   

What to do?

To help prevent constipation:

• Try to eat more fiber rich foods like fruits with skin, leafy greens and whole grains.
• Drink at least 6 to 8 cups of liquids each day unless your health care team has told you to drink more or less.
• Be Active. Exercise can help to keep you regular.
• If you take opioid pain medication, ask your health care team if eating more fibre is right for you.
   

To help treat constipation:

• If you have not had a bowel movement in 2 to 3 days you may need to take a laxative (medication to help you poo) to help you have regular bowel movements. Ask your health care team what to do.

Ask your health care team for the Constipation Pamphlet for more information.

Cough and feeling short of breath

What to look for?

• You may have a cough and feel short of breath.
• Symptoms that commonly occur with a cough are:
  • wheezing or a whistling breathing
  • runny nose
  • sore throat
  • heartburn
  • weight loss
  • fever and chills
• Rarely this may be severe with chest pain, trouble breathing or coughing up blood.
   

What to do?

• Check your temperature to see if you have a fever. Read the above section "What should I do if I feel unwell, have pain, a headache or a fever?".
• If you have a fever, try to talk to your health care team. If you are not able to talk to them for advice, you MUST get emergency medical help right away.
• If you have a severe cough with chest pain, trouble breathing or you are coughing up blood, get medical help right away.

High blood pressure

What to look for?

• There are usually no signs of high blood pressure.
• Rarely, you may have headaches, shortness of breath or nosebleeds.
   

What to do?

• Check your blood pressure regularly.
• Your doctor may prescribe medication to treat high blood pressure.

If you have a severe headache get emergency help right away as it may be a sign your blood pressure is too high.

Anemia (low red blood cells)

What to look for?

• You may feel more tired or weaker than normal.
• Pale skin and cold hands and feet.
• You may feel short of breath, dizzy or lightheaded.
• This may occur in days to weeks after your treatment starts.
   

What to do?

If your health care team has told you that you have anemia (low red blood cells):

• Rest often and eat well.
• Light exercise, such as walking may help.
• You may need medication or a blood transfusion.
• If it is very bad, your doctor may need to make changes to your treatment regimen.