Isotretinoin for Neuroblastoma

Isotretinoin (ai-sow-tret-i-noyn) belongs to a group of medicines called retinoids, which are similar to vitamin A. Isotretinoin is used to treat some types of cancer such as neuroblastoma. Isotretinoin is also used to treat severe acne but this information sheet is for patients using isotretinoin for neuroblastoma. Isotretinoin is sometimes called cis-retinoic acid.

Isotretinoin capsules are made by different companies, and different brands of the same medicine have different names (e.g. Roaccutane^®).

Important information

• Isotretinoin causes birth defects and must be avoided in pregnant women
• Sexually active females must have a negative pregnancy test prior to starting treatment and use effective contraception one month prior to starting isotretinoin, during treatment and for 1 month after stopping isotretinoin
• Patients should not take any vitamins or supplements containing vitamin A while taking isotretinoin 
• While taking isotretinoin, patients should avoid certain types of antibiotics called tetracyclines (check with your doctor or pharmacist)
• Avoid alcohol while taking isotretinoin  

Giving your child isotretinoin

Isotretinoin is available as 10 mg and 20 mg capsules, there is no liquid form available.

Your child’s doctor will work out the amount (the dose) of isotretinoin that is right for your child. The dose will be shown on the medicine label.  

• Isotretinoin should be given with fatty food or milk
• Capsules can be swallowed whole (preferred) or chewed
• If your child cannot swallow or chew the capsules, see instructions below in the ‘Common questions our staff are asked’ section
• Some patients may need two strengths of isotretinoin to make up their dose, read the directions on the label carefully
• Parents or caregivers who are pregnant or planning to become pregnant should not handle this medicine and should wear gloves when handling patient waste (urine, faeces or nappies) – speak to a pharmacist or doctor for more information

When should I give isotretinoin?

Isotretinoin capsules are usually given twice a day, morning and night, for 14 days in a row followed by a break of 14 days.

If more than one person usually gives your child their medication, make sure that you tell each other and write down doses given so that you don’t give extra doses by mistake.

Possible side effects

Medicines sometimes have side effects. Some side effects will go away with time, or come back after the dose has been changed. Speak to your child’s doctor if you are worried about any of the following possible side effects of isotretinoin: 

• Drying of the skin, lips, nose and eyes

Moisturisers and lip balms with vitamin E should be used during isotretinoin treatment. Lubricating eye drops or ‘artificial tears’ may also be used for patients with dry eyes. Petroleum jelly can be used to soften the lining of the nose if needed

• Sensitivity to sunlight

Your child’s skin may become more prone to sunburn while taking isotretinoin – always apply sunscreen, wear a hat and protective clothing when outdoors

• Changes in liver function

Blood tests will be taken to monitor your child’s liver function

• Mood changes

Some patients who take isotretinoin can feel sad or depressed – speak to your child’s doctor if you think your child is depressed or has thoughts/attempts at self-harm

• Changes to alertness or vision

Some people experience changes to their alertness, eyesight or night vision. Patients are advised to avoid driving or operating heavy machinery until they know how the medicine affects them. 

There may be other side effects that are not listed in this fact sheet. If you notice anything unusual or are worried about your child, contact your doctor or pharmacist.

What to do if a dose is missed

Skip the missed dose and continue giving isotretinoin at normal times.

What to do if you give too much isotretinoin

If you think you may have given your child too much isotretinoin, call the Poisons Information Centre on 13 11 26 as soon as possible, even if your child shows no symptoms. In the case of an emergency, call an ambulance (000) or take your child to the nearest hospital emergency department. Have the medicine container or packaging with you, even if it is empty, as this information is useful.

General medicine advice

• Store isotretinoin out of children’s reach and always keep medicine in the container or box that it came in.
• Give isotretinoin only as directed and only to the person whom the medicine was prescribed for. Never give it to another person as this could do harm.
• If your child needs surgery, you must tell the anaesthetist that your child is taking isotretinoin.
• Store isotretinoin capsules at room temperature, in a cool, dry place away from heat or direct sunlight, below 25⁰C.
• If your child is no longer taking isotretinoin, return any unused medicine to your local pharmacy or hospital for disposal

Key points to remember

• Isotretinoin should be given with fatty food or milk
• Moisturisers and lip balms with vitamin E should be used during isotretinoin treatment
• Your child’s skin may become more prone to sunburn while taking isotretinoin – always apply sunscreen, wear a hat and protective clothing when outdoors
• Isotretinoin causes birth defects and must be avoided in pregnant women

For more information

• This fact sheet has been made to provide advice about the use of this medicine in children and should be read in addition to the information at NPS MedicineWise.
• Kids Health Info fact sheet: Medicines for children and medicine reactions
• Talk to your doctor or pharmacist
• The Therapeutic Goods Administration: Consumers

Common questions our staff are asked:

What if my child cannot swallow or chew the capsules?

Follow the steps below. Parents or caregivers who are pregnant or planning to become pregnant should not handle this medicine – speak to a pharmacist or doctor for more information.  

You will need:

• Disposable gloves
• Medicine cup or small glass/cup (to be used for this purpose only)
• Spoon (to be used for this purpose only)
• A needle and sharps bin (if the softened capsule cannot be swallowed)
• Paper towel  

1. Put gloves on and lay paper towel down to create a clean area.

2. Place the capsule(s) in a small glass of warm tap water (not boiling) or milk. The liquid may turn red – this is ok.

3. Some children may be able to chew or swallow the softened capsule. It can also be placed on a spoon with some fatty food (e.g. milk, peanut butter, pudding or ice cream) and eaten.

4. If this is not possible, carefully puncture the capsule with a needle and squeeze the contents over a spoon with a small amount of fatty food. The capsule will be slippery, handle with care.

5. If administration via a feeding tube is required, puncture the capsule as above and mix the contents with a small amount of olive oil. Draw this up into an oral/enteral syringe (purple plunger). Flush the tube with 1 mL of olive oil after the dose. If not continuing a feed, flush the feeding tube with 5-10 mL of water. 

6. Place needle and empty capsule in the sharps bin. Dispose of gloves and paper towel. Wash any cups or spoons used in hot, soapy water and set aside for the next dose of isotretinoin.

Developed by The Royal Children's Children’s Cancer Centre Pharmacy and Medication Safety Committee. We acknowledge the input of RCH consumers and carers. 

Developed August 2022. 

Kids Health Info is supported by The Royal Children’s Hospital Foundation. To donate, visit www.rchfoundation.org.au