Pentostatin (Nipent®)

Pentostatin (Nipent^®) is used to treat a rare type of  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 doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.

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

You may get some of the side effects we mention, but you are unlikely to get all of them. If you are also having treatment with other cancer drugs, you may have some side effects that we have not listed here. Always tell your doctor, nurse or pharmacist about any side effects you have.

Your doctor can give you drugs to help control some side effects. It is important to take them exactly as your nurse or pharmacist explains. This means they will be more likely to work for you. Your nurse will give you advice about managing your side effects. After your treatment is over, most side effects start to improve.

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

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

We cannot list every side effect for this treatment. There are some rare side effects that are not listed. You can visit the electronic Medicines Compendium (eMC) for more detailed information.

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

Your doctor may give you antibiotics and other drugs to try to stop you getting an infection. These are called prophylactic medicines.

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. Contact the hospital straight away on the 24-hour contact number you have been given if:

• your temperature goes over 37.5°C (99.5°F)
• you suddenly feel unwell, even with a normal temperature
• you have symptoms of an infection
• your temperature goes below 36°C (96.8°F).

Symptoms of an infection include:

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

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

The number of white blood cells 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 or purple spots on the skin that may look like a rash.

Tell your doctor if you have any unexplained bruising or bleeding. 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 have symptoms such as:

• pale skin
• lack of energy
• feeling breathless
• feeling dizzy and light-headed.

Tell your doctor or nurse if you have these symptoms.

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 will give you anti-sickness drugs to help prevent or control sickness during your treatment. Take the drugs exactly as your nurse or pharmacist tells you. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluids often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or are sick (vomit) more than once in 24 hours, contact the hospital as soon as possible. They will give you advice. Your doctor or nurse may change the anti-sickness drug to one that works better for you.

This treatment can affect your appetite. Don't worry if you do not eat much for a day or 2. But if your appetite does not come back after a few days, or if you are losing weight, tell your nurse or dietitian. 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.

You may get a bitter or metal taste in your mouth. Sucking sugar-free sweets may help with this. Some foods may taste different or have no taste. Try different foods to find out what tastes best to you. Taste changes usually get better after treatment finishes. Your nurse can give you more advice.

Helpful hints to improve taste

• Season food or add spices and herbs to add flavour when cooking.
• Use strong, flavoured sauces or gravies to make food tastier.
• Eat sharp-tasting fresh fruit and juices or try sugar-free sweets to leave a pleasant taste in your mouth.
• Try cold foods as they may have a stronger taste than hot foods.

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.

If your mouth or throat is sore:

• tell your nurse or doctor – they can give you a mouthwash or medicines to help
• try to drink plenty of fluids
• avoid alcohol, tobacco, and foods that irritate your mouth and throat.

Sucking ice chips may sometimes help relieve mouth or throat pain. But if you are having radiotherapy to the head or neck, do not suck on ice. It can cause damage.

This treatment can cause teeth and gum problems. 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 has finished. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can give you more energy.

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

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

If you have diarrhoea:

• try to drink at least 2 litres (3½ pints) of fluids each day
• avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods
• contact the hospital for advice.

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 for advice. Your doctor can give you drugs called laxatives to help.

You may get pain or discomfort in your tummy (abdomen). You may feel bloated or have indigestion or wind. Tell your doctor if you have any of these symptoms as they can prescribe drugs to help. 

Tell them if the pain gets worse or does not get better.

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.

Your nurse can talk to you about ways to cope with hair loss. There are ways to cover up hair loss if you want to. Your scalp may be sensitive. It is important to cover your head to protect your skin when you are out in the sun.

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

This treatment may affect the nerves, which can cause numb, tingling or painful hands or feet. You may find it hard to fasten buttons or do other fiddly tasks.

Tell your doctor if you have these symptoms. They sometimes need to lower the dose of the drug. The symptoms usually improve slowly after treatment finishes. But for some people they may never go away. Talk to your doctor if you are worried about this.

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 these as you are told to.

This treatment may also make your eyes more sensitive to light and cause blurry 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 usually get better after this treatment ends. But some can be permanent. Tell your doctor if you notice any changes in your hearing.

Pentostatin can affect the way the liver works. Sometimes, this causes the skin to turn yellow. This can also happen to the whites of the eyes. Tell your doctor or nurse if you notice these effects.

The effects are usually mild and go back to normal after treatment. You will have blood tests to check how well your liver is working.

Pentostatin may cause problems with passing urine. Tell your doctor or nurse straight away if you notice blood in your pee or if you have pain or difficulty peeing.

This treatment can affect how your kidneys work. This is usually mild and goes back to normal after treatment finishes. You will have blood tests to check how well your kidneys are working. Tell your doctor or nurse if you have blood in your urine (pee) or you are passing urine less than usual.

It is important to drink at least 2 litres (3½ pints) of non-alcoholic fluid each day to help protect your kidneys.

You may get pain in your muscles or joints for a few days after treatment. If this happens, tell your doctor so they can give you painkillers. Tell them if the pain does not get better. Having warm baths and taking regular rests may help.

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

• have a fit (seizure)
• see or hear things that are not there (hallucinations)
• feel anxious or restless
• cannot sleep (insomnia)
• have strange dreams
• feel drowsy
• feel confused
• feel dizzy.

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

You may have difficulty getting or keeping an erection while on this treatment.

This treatment may cause headaches. If you have headaches, tell your doctor. They may give you painkillers to help.

After this treatment, any blood or platelet transfusions you have must always be treated with radiation (irradiated) first. This lowers the risk of the donated blood cells reacting against your own. It will not damage the blood or make you radioactive. 

Your doctor will record in your medical notes that you should only be given irradiated blood products. They will also give you a card to carry in case you are treated at another hospital. Keep this card with you at all times and remind your hospital team that you need irradiated blood or platelets.

This treatment can cause side effects that only start months or years after your treatment. This includes an increased risk of:

• infections
• developing a second cancer.

The benefits of treatment usually far outweigh this risk. Your doctor can talk to you about this.

Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:

• throbbing pain, redness or swelling in a leg or arm
• suddenly feeling breathless or coughing
• sharp chest pain, which may be worse when you cough or take a deep breath.

If you have any of these symptoms, contact the hospital straight away on the 24-hour contact number you have been given. If you cannot get through to your doctor, call the NHS urgent advice number on 111.

A blood clot is serious, but it can be treated with drugs that thin the blood (anticoagulants). Your doctor or nurse can give you more information.

You can help reduce the risk of developing a blood clot by:

• staying active during treatment
• drinking plenty of fluids, especially water.

You may be given anticoagulants to help prevent a clot.

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

• medicines you have been prescribed
• medicines you buy in a shop or chemist
• vitamins, herbal drugs and complementary therapies.

Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.

You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.

Vaccinations can reduce your risk of getting certain infections. Your doctor or nurse may talk to you about having vaccinations.

Doctors usually recommend that people with cancer have a flu vaccination and a coronavirus (covid) vaccination. These are both inactivated vaccinations that can help reduce the risk of infection. People with weak immune systems can have these, as they are not live vaccinations. 

If your immune system is weak, you need to avoid live vaccinations. This is because they can make you unwell. Live vaccines contain a very weak version of the illness they are vaccinating you against. Your cancer doctor or GP can tell you more about live and inactivated vaccinations.

Your doctor will advise you not to get pregnant or make someone pregnant while having this treatment. The drugs may harm a developing baby. It is important to use contraception during your treatment and for a while after treatment finishes. Your doctor, nurse or pharmacist can tell you more about this.

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

Your doctor or nurse 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 a period, these may become irregular or stop while you are having this treatment. This may be temporary, but it can sometimes be permanent. Your menopause may start sooner than it would have done. Your doctor or nurse can give you more information.

If you have sex in the first few days after this treatment, you should use barrier protection such as a condom or dental dam. This will protect your partner if any of the drug is in your semen or vaginal fluids.

If you need medical treatment for any reason other than cancer, always tell the doctors and nurses you are having cancer treatment. Give them the contact details for your cancer doctor so they can ask for advice.

If you think you need dental treatment, talk to your cancer doctor or nurse. Always tell your dentist you are having cancer treatment.