This fact sheet is about the use of cyclophosphamide (as an infusion rather than a tablet) in children with joint, kidney and other inflammatory conditions.
This information may differ from that provided by the manufacturer which is usually aimed at adult patients.
Cyclophosphamide is a cytotoxic medicine and special precautions are required to handle the medication and when handling your child’s bodily fluids (vomit, urine/wee, faeces/poo) for up to 7 days after they have received a dose.
If your child is sexually active, it is important they use appropriate contraception while receiving cyclophosphamide and for a period of time afterwards. Please ask your child’s doctor for more information.
Your child should not use cyclophosphamide if they are pregnant or breastfeeding.
If you are a parent or carer who is pregnant or breastfeeding, and your child is being treated with cyclophosphamide, it is recommended that you avoid directly handling your child’s urine, bowel movements or vomits during their treatment and for 7 days after they have received a dose.
If you need further information speak to a pharmacist before leaving the hospital.
Is only available in hospital and prepared specifically for your child.
Cyclophosphamide is also available as tablets, but this leaflet is about using the infusion.
Common brand names of the injection form are:
Why is it important for my child to take this medicine?
Cyclophosphamide is used to treat different conditions that involve the immune system, to stop organ transplant rejection and to treat some types of cancers. It works by lowering the body’s immune system response to stop the body from harming itself. Cyclophosphamide is used when other medicines (e.g. corticosteroids such as prednisolone or methylprednisolone) aren’t working for the condition.
How will the cyclophosphamide infusion be given?
Cyclophosphamide infusion is always given in hospital administered through a cannula into a vein over a set time. The doctor will check it is safe for your child to be given cyclophosphamide. They will arrange for blood tests for your child to check this.
Your child will have a cannula inserted. The nursing staff will give:
- Hydration fluids. These are extra fluids to flush the kidneys and bladder to stop the cyclophosphamide irritating the bladder lining, causing it to bleed (haemorrhagic cystitis). The doctor decides how much fluid is needed. It may start one hour before the cyclophosphamide infusion, keep going during the infusion, and continue for another four hours after.
- Cyclophosphamide infusion. This will run for one hour.
Visiting the hospital, and having the treatment can take six to eight hours. Sometimes, the doctor has to make changes to the infusion time for your child. These changes will only be decided on the day.
Another medication called Mesna may also be used to protect the bladder from the side effects of cyclophosphamide (bleeding). Your doctor will decide whether your child needs Mesna.
How much cyclophosphamide will my child be given?
Each child gets the dose that is right for their condition. The doctor will decide how much cyclophosphamide to give. They will work this out using your child’s weight, their age, their height and how well their kidneys work.
How often will cyclophosphamide be given?
The doctor will decide how many infusions to give, and how far apart they will be. Cyclophosphamide infusion is sometimes given every 2 to 4 weeks for several months.
Before you leave, make sure you know when the next infusion will be.
When should cyclophosphamide start working?
It may take a few weeks for cyclophosphamide to start working. It may take a few months for its full effect to be seen on your child’s condition.
Are there any possible side effects?
We use medicines to make our children better, but sometimes they have other effects that we don’t want (side effects).
|Serious side effects you must do something about – Contact your doctor straight away or take your child to hospital. You may need to call an Ambulance on 000
- Signs of infection such as fever (above 38°C), chills, sore throat, cough or rash. Contact your doctor even if it has been a number of weeks since your child’s last infusion of cyclophosphamide
- Haemorrhagic cystitis or bleeding from the bladder. Signs include blood in urine, pain when passing urine and increased need to urinate. The hydration your child receives during hospital will reduce the risk
- Allergic reactions e.g. trouble breathing, wheezing, chest tightness, swelling of throat, lips, tongue or face, skin blistering or peeling, rash or redness, chest pain, altered heartbeat, seizures (fitting), dizziness – Call an Ambulance on 000
- Severe diarrhoea, lower stomach pain, mouth ulcers, yellowing of the skin or whites of the eyes
- Bleeding or bruising that is unusual or more than normally occurs
- Tiredness, dizziness and pale looking skin which may be due to cyclophosphamide’s effects on the body’s ability to make red blood cells
|Other side effects you need to know about – Talk to your doctor about these if they occur
- Nausea and vomiting. Your child will be given an anti-nausea medicine just before the cyclophosphamide infusion to help reduce nausea or vomiting. If your child has nausea or vomiting at home, contact your child’s doctor. They may be able to give you anti-nausea medication for use at home
- Facial flushing (redness) and nasal congestion (stuffy nose) may occur during the infusion
- Hair loss (alopecia). Some people lose their hair during the infusions. This will grow back once the full course of treatment is finished. Sometimes the hair has a different colour or texture
- Monthly periods may temporarily stop (amenorrhea) in a small number of female patients (about 1 in 8). Periods usually start again when cyclophosphamide treatment is stopped, but it might take a few months
- Your child may be more likely to get infections, or cuts and sores might take longer to heal. This is because cyclophosphamide is affecting the immune system. Talk to your child’s doctor, nurse or pharmacist about what you can do to help protect your child from infections. Your child’s doctor may also prescribe medicines to prevent infections
|Potential long-term side effects
- There is a very small chance that cyclophosphamide will affect your child’s ability to have children later in life
- The use of cyclophosphamide can lead to a small increase in the chance of certain types of cancer occurring later in life
- Talk to your doctor about these effects. Often, the benefit of treating your child’s condition will outweigh the potential increased risk of these conditions. Ask questions if you are worried
Can other medicines be given while my child is undergoing treatment with cyclophosphamide?
You can give your child:
- Paracetamol (to treat pain), unless your doctor has told you not to.
Check with your child’s doctor before giving:
- Non-steroidal anti-inflammatory medicines (also called NSAIDs or anti-inflammatories) or aspirin as they may need to be avoided. Examples include: ibuprofen (Nurofen®), diclofenac (Voltaren®) and naproxen (Naprogesic®).
- Any other medicine or new medicine, including prescription medicines, medicines bought over the counter, online or from health food stores (includes herbal and complementary medicines). These might affect how well cyclophosphamide works. Talk to your doctor or pharmacist.
Is there anything else I need to know about cyclophosphamide?
Safe handling of body fluids at home
Cyclophosphamide is a cytotoxic medicine, which means it can potentially damage cells within the body. It will be in your child’s vomit, wee (urine) and poo (bowel motions) for up to seven days after the infusion. It is important to minimise other members of the family being exposed to the medicine in these body fluids of your child.
In hospital, the staff coming in contact with the medicine or your child’s body fluids will wear full protective equipment.
While your child is being treated with cyclophosphamide the following equipment is recommended to have available at home and use for 7 days after each infusion:
- Disposable household gloves are adequate to handle your child’s body fluids (cleaning up vomit, changing nappies, and changing soiled bed clothes)
- Protective gear such as plastic apron, goggles, mask and gloves may be available from the hospital. Talk to the nursing staff to arrange supply before you go home the first time.
- Flushable paper or paper towelling
- Household detergent
- Plastic bags
To clean your child’s wee (urine), poo (bowel motions) or vomit off a household surface:
- Put on disposable gloves or protective gear depending on what you have available at home.
- Wipe up the body fluid with either flushable paper (to be flushed down the toilet), or paper towelling/ disposable cloths (which are placed in a plastic bag after use).
- Clean the area with disposable cloths, water and detergent, rinsing well (dispose of these cleaning cloths in the plastic bag).
- Place all gloves, disposable cloths and other disposable protective equipment that you used into a plastic bag and tie it closed. Place this plastic bag into a second plastic bag and tie. Place this double bagged rubbish into your outside general rubbish bin.
- It is safe for your child to use the toilet connected to normal sewerage or septic system during this time.
- Make sure you close the lid of the toilet prior to flushing and use a full flush volume. You can continue to clean your toilet as normal but should use protective equipment.
- Any other waste items such as nappies, pads, ostomy bags or gloves need to be placed into a plastic bag, tied and then placed into a second plastic bag and tied, before placing immediately into the outside general rubbish bin.
- It is recommended that any soiled clothing and/or bed linen be washed immediately in a separate wash to other laundry items. These items need to be washed twice on a hot wash, using detergent and the longest wash/ rinse cycle possible. If immediate washing is not possible, store soiled items in a tied plastic bag until it can be washed.
- Wash your hands thoroughly with soap and water after handling waste or soiled clothing/ linen.
- If any skin is splashed with your child’s urine, bowel motions, or vomit: Remove contaminated clothing and wash the affected area with running water and soap for approximately 15 minutes.
- If the eyes are splashed with your child’s urine, bowel motions, or vomit: Flush the eye with water from a slow running tap or a cup or jug. Continue to flush for 15 minutes. Then call the Queensland Poisons Information Centre on 13 11 26 or your doctor for advice.
Make sure you know when your child’s next infusion appointment is. Try to keep appointments for the infusion and contact the hospital if you think you can’t attend. It is important to give this medicine at the right interval.
If you think there is a problem with the infusion or the hydration fluids, talk to your child’s nurse or doctor straight away.
Level 2, Queensland Children’s Hospital
501 Stanley Street, South Brisbane 4101
t: 07 3068 1901
In an emergency, always contact 000 for immediate assistance.