Treatment side effects

Differentiation syndrome

Both ATRA and arsenic trioxide work by forcing leukaemia cells to mature into healthy white blood cells.

Sometimes this happens too quickly and your body can struggle to cope. This is known as ‘differentiation syndrome’ (sometimes called ‘retinoic acid syndrome’ or ‘RA syndrome’). It’s most likely to happen in the first three weeks of treatment.

Symptoms of differentiation syndrome include:

• difficulty breathing
• fever
• weight gain
• swelling (caused by fluid build-up)
• low blood pressure
• coughing
• chest pain
• feeling unusually tired or weak
• feeling sick or being sick
• frequent watery poos (diarrhoea)
• dehydration
• weeing (urinating) more than usual
• confusion
• drowsiness.

Differentiation syndrome is a serious condition, so if you have any of these symptoms, tell your doctor or nurse straight away. You may need to stop taking ATRA or arsenic trioxide for a few days.

If you have a high white blood cell count when you’re diagnosed, or if it goes up once treatment starts, you may be at higher risk of developing differentiation syndrome. Your doctor may suggest you take drugs called steroids to treat it. You may also receive a gentle type of chemotherapy to bring your white blood cell count down.

Allergic reaction

Tell your doctor straight away if you notice one of the following side effects, as these may be signs of an allergic reaction:

• difficulty breathing
• fever
• sudden weight gain
• swelling (caused by fluid build-up)
• fainting
• feeling a strong heartbeat in your chest (palpitation).

If you’re having arsenic trioxide in combination with ATRA, you may experience some other common short-term side effects such as:

• headache
• dizziness
• muscle pain
• numbness or tingling
• rash or itching
• fast heartbeat.

We know that arsenic trioxide is an effective treatment for APL, and like any approved treatment, it has been through rigorous trials to ensure it’s as safe as possible. However, as it is a relatively new treatment, we don’t yet know whether there are any longer-term side effects. If you are worried about this, speak to your healthcare team.

ATRA may be harmful to a baby conceived or developing during treatment. You’ll need to use contraception to avoid becoming pregnant or fathering a child, while you’re having this treatment.

If you’re having ATRA combined with chemotherapy, you may experience some short-term side effects caused by the chemotherapy.

Tell your healthcare team if you have any of these, as there are often things that can help.

We have more information about infections, feeling or being sick, and having sore mouth or gut (mucositis).

• infections
• extreme tiredness
• loss of appetite
• feeling sick or being sick
• frequent watery poos (diarrhoea)
• stomach pain
• a sore mouth or mouth ulcers (mucositis)
• hair loss
• reddish coloured urine 1-2 days after taking the medicine
• fever or chills
• aches or pain
• bruising or bleeding
• slow, fast or irregular heartbeat, or chest pain
• problems with your sight
• swelling
• shortness of breath or coughing
• skin rash, redness or itching
• sweating.

This depends on which drugs you take, the dose of drug you take, and how strong your treatment is (also called intensity). Your doctor will discuss these potential side effects with you before you start your treatment.

Heart problems

Chemotherapy drugs called anthracyclines can cause heart problems. This will depend on the type and amount of anthracyclines you need to take. Your healthcare team will tell you more about this risk.

Fertility

Before your treatment starts, you should talk to your healthcare team about how it might affect your plans to have children, if that’s relevant and important to you.

Chemotherapy given for APL can affect fertility – particularly in men. You will normally have to start your treatment quickly, so there usually isn’t time to preserve a woman’s eggs. Men sometimes have a chance to freeze their sperm for the future.

But if you do have children after you’ve finished treatment, studies have shown that the treatment you’ve had won’t affect their health.

Ask your healthcare team about your fertility options. They can refer you to a fertility department. The Infertility Network UK also provides additional support and advice