Hydroxycarbamide

During treatment you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse, and a specialist pharmacist. This is who we mean when we mention doctor, nurse or pharmacist in this information.

While you are having this treatment you will have regular blood tests. This is to check that your blood cells are at a safe level for you to have chemotherapy. 

You will see a doctor or nurse before you have chemotherapy. They will talk to you about your blood results and ask you how you have been feeling. If your blood results are okay, the pharmacist will prepare your chemotherapy. Your nurse will tell you when your treatment is likely to be ready.

Hydroxycarbamide comes in capsules so you can take it at home. It may be given on its own, or with other chemotherapy drugs.

If you have a blood cancer, you might take hydroxycarbamide capsules every day. Your course of treatment will depend on what type of cancer you have. Your nurse or doctor will talk to you about:

• how often you take the capsules 
• how long you take them for

They may give you a copy of the treatment plan to take home with you. 

The nurse or pharmacist will give you the capsules to take home. Always take them exactly as explained. This is important to make sure they work as well as possible for you. You may be given capsules of different strengths. 

Your nurse or pharmacist may also give you anti-sickness drugs and other medicines to take home. Take all your capsules and tablets exactly as the nurse or pharmacist explains to you.

Take the capsules at the same time every day. Tell your doctor, nurse or pharmacist if you have difficulties swallowing the capsules. They can give you advice.

If you forget to take the capsules, you should take the missed dose as soon as possible within the same day. If a full day has gone by, tell your doctor or nurse. Do not take a double dose unless your doctor tells you to.

Hydroxycarbamide must be swallowed whole with a glass of water. They should not be chewed, opened or crushed. Take them at the same time every day. 

Other things to remember about your capsules:

• Wash your hands after taking your tablets and capsules.
• Other people should avoid direct contact with the chemotherapy drugs.
• Keep them in the original package and at room temperature, away from heat and direct sunlight.
• Keep them safe and out of sight and reach of children.
• If you are sick just after taking the capsules or tablets, contact the hospital. Do not take another dose.
• If your treatment is stopped return any unused capsules/ tablets to the pharmacist.

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If your white blood cell count is low, you may be more likely to get an infection. A low white blood cell count is called neutropenia.

An infection can be very serious when the number of white blood cells is low. It is important to get any infection treated as soon as possible. If you have any of the following symptoms, contact the hospital straight away on the 24-hour number:

• a temperature above 37.5°C  
• a temperature below 36°C 
• you feel unwell, even with a normal temperature
• you have symptoms of an infection.

Symptoms of an infection include:

• feeling shivery and shaking
• a sore throat
• a cough 
• breathlessness
• diarrhoea
• needing to pass urine (pee) often, or discomfort when you pass urine.

It is important to follow any specific advice your cancer treatment team gives you.

Your white blood cell count will usually return to normal before your next treatment. You will have a blood test before having more treatment. If your white blood cell count is low, your doctor may delay your treatment for a short time, until your cell count increases.

This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot.

If the number of platelets is low, you may bruise or bleed easily. You may have:

• nosebleeds
• bleeding gums
• heavy periods
• blood in your urine (pee) or stools (poo)
• tiny red, brown or purple spots that may look like a rash – these spots can be harder to see if you have black or brown skin. 

If you have any unexplained bruising or bleeding, contact the hospital straight away on the 24-hour number. You may need a drip to give you extra platelets. This is called a platelet transfusion.

This treatment can reduce the number of red blood cells in your blood. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may feel:

• very low in energy
• breathless 
• dizzy and light-headed. 

If you have these symptoms, contact the hospital straight away on the 24-hour number. You may need treatment for anaemia. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

Your doctor, nurse or pharmacist will prescribe anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as they tell you to, even if you do not feel sick. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluid often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or if you are sick (vomit) 1 to 2 times in 24 hours, contact the hospital on the 24-hour number as soon as possible. They will give you advice. They may change your anti-sickness treatment. Let them know if you still feel sick.

This treatment can cause constipation. Constipation means that you are not able to pass stools (poo) as often as you normally do. It can become difficult or painful. Here are some tips that may help:

• Drink at least 2 litres (3½ pints) of fluids each day.
• Eat high-fibre foods, such as fruit, vegetables and wholemeal bread.
• Do regular gentle exercise, like going for short walks.

If you have constipation, contact the hospital on the 24-hour number for advice. They can give you drugs called laxatives to help. 

If you have not been able to pass stools for over 2 days and are being sick, contact the 24-hour number straight away. 

This treatment may cause diarrhoea. Diarrhoea means passing more stools (poo) than is normal for you, or having watery or loose stools. You may also have stomach cramps. If you have a stoma, it may be more active than usual. 

If you are passing loose stools 3 or more times a day and this is not normal for you, contact the hospital as soon as possible on the 24-hour number. Follow the advice they give you about:

• taking anti-diarrhoea medicines 
• drinking enough fluids to keep you hydrated and to replace lost salts and minerals
• any changes to your diet that might help. 

They might also ask you for a specimen of your stool to check for infection.

This treatment can affect your appetite. Don’t worry if you do not eat much for 1 or 2 days. But if your appetite does not come back after a few days, or if you are losing weight, tell your doctor, nurse or pharmacist. They can give you advice. They may give you food or drink supplements. Or they may suggest changes to your diet or eating habits to help.

This treatment may cause a sore mouth and throat. You may also get mouth ulcers. This can make you more likely to get a mouth or throat infection. Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.

Contact the hospital straight away on the 24-hour number, if:

• a sore mouth or throat affects how much you can drink or eat 
• your mouth, tongue, throat or lips have any blisters, ulcers or white patches. 

They can give you advice, and mouthwash or medicines to help with the pain or to treat any infection. Follow their advice and make sure you:

• drink plenty of fluids
• avoid alcohol and tobacco
• avoid food or drinks that irritate your mouth and throat.

This treatment can cause tummy pain and indigestion. It can also cause inflammation of the pancreas, but this is rare. Tell your nurse or doctor if you have pain in your tummy (abdomen).

Your hair may get thinner. But you are unlikely to lose all the hair from your head. Hair loss usually starts after your first or second treatment. It is almost always temporary, and your hair will usually grow back after treatment ends. 

Your nurse can talk to you about ways to cope with hair loss.

Feeling tired is a common side effect of this treatment. It is often worse towards the end of treatment and for some weeks after it ends. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can help you feel less tired. 

If you feel sleepy, do not drive or use machinery.

This treatment may affect your skin. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day.

Your skin may also darken. It will return to its normal colour after you finish treatment. If you have had radiotherapy, either recently or in the past, the area that was treated may become red or sore.

Taking hydroxycarbamide for a long time can increase your risk of developing skin cancer. It is important to protect your skin by:

• avoiding being out in the sun 
• using sunscreen with a high sun protection factor (at least SPF 30)
• wearing protective clothing and a hat. 

Your doctor or nurse can give you more advice. They can also tell you about skin changes to look out for.

Always tell your doctor or nurse about any changes to the skin. They can give you advice and may prescribe creams or medicines to help. Any changes to your skin are usually temporary and improve when treatment finishes.

If you take hydroxycarbamide for a long time, you may get ulcers on your legs and feet. Tell your doctor if you notice a break in the skin of your leg or foot. Your treatment may need to be adjusted. Leg and foot ulcers usually get better after treatment finishes.

This treatment can affect your nails. They may grow more slowly or break more easily. You might notice ridges or white or dark lines across your nails. These changes usually disappear as the nails grow out after treatment. Sometimes nails can become loose or fall out.

If the skin around your nails becomes sore and swollen, contact the hospital straight away on the 24-hour number. These might be signs of an infection.

Tips to look after your nails:

• Keep your nails clipped short and clean. 
• Avoid using very hot water when washing your hands or bathing.
• Moisturise your nails and cuticles regularly.
• It is okay to use water-based nail polish - but ask your cancer team if you want to use false nails, gels or other acrylics during treatment.
• Wear gloves to protect your nails when working in the house or garden.
• If your toenails are affected, wear well-fitting shoes, or shoes with open toes to cushion them.

Tell your doctor or nurse about any changes to your nails. They can give you advice or arrange for you to see a podiatrist. They are a foot care specialist.

This treatment may affect the nerves in your fingers and toes. This can cause numbness, tingling or pain in your hands or feet. This is called peripheral neuropathy. You might find it hard to do fiddly tasks such as fastening buttons or tying shoelaces.

If you have these symptoms, always tell your doctor, nurse or pharmacist. They sometimes need to change the drug or the dose of the drug. The symptoms usually improve slowly after treatment ends. But for some people they continue and are a long-term side effect of treatment.

This treatment may cause headaches. If you have headaches, tell your doctor, nurse or pharmacist. They can give you advice about painkillers that may help. Tell them if the headache does not get better, or gets worse.

This treatment can affect how the kidneys work. This is usually mild and goes back to normal after treatment ends. You will have blood tests to check how well your kidneys are working. Contact the hospital on the 24-hour number if you:

• have blood in your urine (pee) 
• are passing less urine or peeing less often than usual.

Drinking fluids helps protect your kidneys. The advice is usually to try to drink at least 2 litres (3½ pints) of fluid each day. But follow any advice from your doctor, nurse or pharmacist about how much is right for you.

This treatment may affect how your liver works. This is usually mild. You will have blood tests to check how well your liver is working.

Some people are at risk of developing a condition called tumour lysis syndrome (TLS) during this treatment. When treatment makes large numbers of cancer cells die and break down quickly, they release lots of waste products into the blood. This can affect how well the kidneys work. It may also cause problems with the heart rhythm.

TLS can be prevented. You will have regular blood tests to check for TLS. If you are at risk of TLS, you may have:

• extra fluids through a drip
• medicines such as rasburicase through a drip, or allopurinol as tablets.

Drinking at least 2 litres (3½ pints) of fluid a day will also help.

Cancer and some cancer treatments can increase the risk of a blood clot. Contact the hospital straight away on the 24-hour number if you have any of these symptoms during or after treatment:

• throbbing pain or swelling in a leg or arm
• reddening of the skin in the area – if you have black or brown skin, this can be harder to notice, but the skin might become darker
• suddenly feeling breathless or coughing.

Always call 999 if you have:

• chest pain
• difficulty breathing.

A blood clot is serious, but it can be treated with drugs called anticoagulants. These thin the blood. Your doctor, nurse or pharmacist can give you more information about preventing and treating blood clots.

Some medicines can affect how this treatment works or be harmful while you are having it. Always tell your cancer doctor, nurse or pharmacist about any drugs you are taking or planning to take, such as: 

• medicines you have been prescribed
• medicines you buy in a shop, pharmacy or online
• vitamins or supplements 
• herbal drugs and complementary or homeopathic therapies
• recreational drugs – for example, cannabis.

Doctors usually recommend that people with cancer have vaccinations for flu and for coronavirus (covid). These help reduce your risk of serious illness from these infections. Most people can have these vaccines, including people with weak immune systems.

If your immune system is weak, you should not have live vaccinations. Live vaccines can make you unwell because they contain a very weak version of the illness they will protect you against. Live vaccines include Zostavax^®, which is a shingles vaccine, and the yellow fever vaccine.

It is important to ask your doctor, nurse or pharmacist for advice about having vaccinations. They can explain what vaccines are right for you and when it is best to have them.

Your doctor, nurse or pharmacist will advise you not to get pregnant or make someone pregnant while having this treatment and for some time afterwards. The drugs may harm a developing baby. It is important to use contraception to prevent pregnancy. Follow their advice about:

• what types of contraception to use 
• how long after treatment you should continue to use contraception. 

You are advised not to breastfeed while having this treatment, or for some time after treatment ends. This is because the drugs could be passed to the baby through breast milk. 

Your doctor, nurse or pharmacist can give you more information.

Some cancer drugs can affect whether you can get pregnant or make someone pregnant. If you are worried about this, it is important to talk with your doctor before you start treatment.

It is possible that small amounts of chemotherapy may be passed on through vaginal fluids or semen. If you have sex during this treatment, your cancer team will usually advise using condoms or a dental dam to protect your partner.

If you need medical treatment for any reason other than cancer, always tell the healthcare professional that you are having cancer treatment. Give them the contact details for your cancer doctor or cancer team so they can ask for advice.

If you have appointments with a dentist, always tell them you are having cancer treatment. Talk to your cancer team before you have any dental treatment.