Pentostatin (Nipent®)

Pentostatin is also known as Nipent^® or deoxycoformycin. It is a chemotherapy treatment. Pentostatin is used to treat a rare type of chronic leukaemia called hairy cell leukaemia. It may sometimes be used to treat other cancers. It is best to read this information with our general information about chemotherapy and the type of cancer you have. 

Your cancer doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.

This information is correct at time of publishing. But sometimes the types of cancer this treatment is used for, or treatment side effects, may change between revision dates.

You can talk to your cancer team if you want more detailed information about this treatment. Or visit the electronic Medicines Compendium (eMC) website, which has patient information leaflets (PIL) for individual drugs.

We explain the most common side effects of this treatment here. We also include some that are less common. 

You may get some of the side effects we mention, but you are unlikely to get all of them. And you may have some side effects, including rarer ones, that we have not listed here. 

Other cancer treatments may cause different side effects. If you are also having other cancer treatment, you may have other side effects.

Always tell your doctor, nurse or pharmacist about any side effects you have. They can give you: 

• drugs to help control some side effects 
• advice about managing side effects. 

It is important to take any drugs exactly as explained. This means they will be more likely to work for you.

Some cancer treatments can cause serious side effects. Sometimes, these may be life-threatening. Your doctor, nurse or pharmacist can explain the risk of these side effects to you.

Your doctor, nurse or pharmacist will give you 24-hour contact numbers for the hospital. If you feel unwell or need advice, you can call at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.

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. Your doctor may give you antibiotics and other drugs to take during this treatment. These may help reduce your risk of getting an infection. 

But it is still 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.

You may be given a drug called G-CSF. This encourages the body to make more white blood cells. You have it as a small injection under the skin.

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 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.

Some foods may taste different or have no taste. Try different foods to find out what tastes best to you. You may also get a bitter or metallic taste in your mouth. Your doctor, nurse or pharmacist can give you advice. It might help to try:

• sucking sugar-free sour or boiled sweets
• eating cold foods
• eating sharp-tasting fresh fruit.

Taste changes usually get better after treatment ends. We have more information about coping with changes to taste.

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 teeth and gum problems. Your doctor or nurse may suggest you have a dental check-up before you start treatment. 

If you have toothache or think you need dental treatment, talk to your doctor or nurse first. Always tell your dentist you are having chemotherapy.

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 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 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. 

You may get pain in your tummy (abdomen), or have indigestion. Your doctor, nurse or pharmacist can give you advice or treatment to help. Contact the hospital straight away on the 24-hour number if your symptoms do not go away, or get worse.

Your hair will get thinner. Or you may lose all the hair from your head. You may also lose your eyelashes and eyebrows, as well as other body hair. Hair loss usually starts after your first or second treatment.

If you want to cover up hair loss, there are different ways you can do this. Your nurse will give you information about coping with hair loss. 

Remember to protect your skin from the sun. Use suncream with a sun protection factor (SPF) of at least 30 on your scalp. Or cover up with a hat or scarf.

Hair loss is almost always temporary. Your hair will usually grow back after treatment ends.

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. This treatment can cause a rash, which may be itchy.

You may notice changes in skin colour during treatment. Your skin may be more sensitive to the sun. Use a suncream with a sun protection factor (SPF) of at least 30 and cover up with clothing and a hat if you are out in the sun.

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

Rarely, a much more serious skin condition can develop. You may have a skin rash which then blisters, and your skin can peel. You may also feel unwell with flu-like symptoms such as a high temperature and joint pain. If you have any of these symptoms, contact your doctor or hospital straight away.

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 make your eyes feel sore, red and itchy (conjunctivitis). Your doctor will prescribe eye drops to help prevent this. It is important to use the eye drops as you are told to.

This treatment may also make your eyes more sensitive to light, become tearful, or cause blurred vision. If you have pain or notice any change in your vision, always tell your doctor or nurse.

This treatment may cause hearing changes, including hearing loss. You may have ringing in the ears. This is called tinnitus. You may also become unable to hear some high-pitched sounds. Hearing changes may get better after this treatment ends. But this does not always happen. If you notice any changes in your hearing, tell your doctor, nurse or pharmacist.

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. 

Sometimes, it can cause the skin or white of the eyes to turn yellow (jaundice). Tell your doctor or nurse if you notice this.

This treatment may cause problems with passing urine. Tell your doctor or nurse straight away if you have pain or difficulty peeing. 

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.

You may get pain in your muscles or joints for a few days after treatment. If this happens, tell your doctor, nurse or pharmacist. They can give you painkillers and advice. They can also tell you if any of the painkillers you usually take are suitable. 

Tell them if the pain does not get better. Having warm baths and resting regularly may help. 

This treatment can affect the nervous system. Tell your doctor or nurse straight away if you:

• have a headache 
• feel very drowsy or confused  
• feel dizzy or unsteady 
• have problems with coordination or speech 

This treatment can also cause seizures (fits). 

It is important not to drive or operate machinery if you notice these effects. 

This treatment can affect your mood and sleep. Tell your doctor or nurse if you feel anxious, low or restless or notice other changes in your feelings. It can also cause you to see or hear things that are not there (hallucinations).

It can also cause difficulty sleeping and strange dreams. It is important not to drive or operate machinery if you feel sleepy.

After this treatment, if you need blood or platelet transfusions, they should be treated with radiation (irradiated) before you have them. This helps prevent a rare but serious reaction that can be caused by white blood cells in the donated blood. 

Irradiated blood is not radioactive and will not harm you or anyone you come into contact with.

Some people must have any blood or platelet transfusions irradiated for the rest of their lives. If you need this, your doctor will give you more information. They will give you a medical alert card to carry in case you need blood in an emergency or at another hospital.

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.

Cancer doctors usually recommend that people with cancer have vaccinations for flu and coronavirus (covid). They may also recommend other vaccines, such as Shingrix^® for shingles. These all help reduce your risk of serious illness from these infections. Most people can have these vaccines, including people with weak immune systems.

You should not have live vaccines if your immune system is weak. This includes if you are having or recently had chemotherapy, radiotherapy or other cancer treatments that affect your immune system. Live vaccines can make you unwell because they contain a very weak version of the illness they protect you against. There are several live vaccines. These include the yellow fever vaccine and Zostavax^®, which is a different type of shingles 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.

If you have periods, these may become irregular or stop while you are having this treatment. They might return after treatment, but this does not always happen. Your menopause may start sooner than it would have done. Your doctor, nurse or pharmacist can give you more information.

It is possible that small amounts of chemotherapy may be passed on through vaginal fluids or semen. If you have sex in the first few days after 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.