What is pentostatin (Nipent® or deoxycoformycin)?

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

How pentostatin is given

You will be given pentostatin in the chemotherapy day unit or during a stay in hospital. A chemotherapy nurse will give it to you. Some people are given pentostatin in combination with other cancer drugs.

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.

Before or on the day of treatment, a nurse or person trained to take blood (phlebotomist) takes a blood sample from you. This is to check your blood cells are at a safe level to have chemotherapy.

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

 

Your nurse usually gives you anti-sickness (anti-emetic) drugs before the chemotherapy. The chemotherapy drugs can be given through:
  • a short thin tube the nurse puts into a vein in your arm or hand (cannula)
  • a fine tube that goes under the skin of your chest and into a vein close by (central line)
  • a fine tube that is put into a vein in your arm and goes up into a vein in your chest (PICC line).

Your nurse can give you pentostatin as a slow injection or drip (infusion) into your cannula or line. The drip is usually given through a pump. This gives the treatment over 20 to 30 minutes. You will also be given extra fluids through a drip. This is to help protect your kidneys.

Your course of chemotherapy

Pentostatin is usually given once every 2 weeks for up to 1 year. Your nurse or doctor will discuss your treatment plan with you.

About side effects

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.

Serious and life-threatening side effects

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.

Contact the hospital

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.

More information

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.

Side effects during treatment

Some people may have side effects while they are being given the chemotherapy or shortly after they have it:

Allergic reaction

Some people have an allergic reaction while having this treatment. Signs of a reaction can include:

  • feeling hot or flushed
  • a skin rash
  • itching
  • shivering
  • feeling dizzy
  • a headache
  • feeling breathless
  • swelling of your face or mouth
  • pain in your back, tummy or chest.

Your nurse will check you for signs of a reaction during your treatment. If you feel unwell or have any of these signs, tell them straight away. If you do have a reaction, it can be treated quickly.

Sometimes a reaction can happen a few hours after treatment. If you get any signs or feel unwell after you get home, contact the hospital straight away.

Pain along the vein

You may get pain at the place where the injection is given or along the vein. If you feel pain, tell your nurse or doctor straight away so that they can check the site. They may give the drug more slowly or flush it through with more fluid to reduce pain.

Common side effects

Risk of infection

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 called neutropenia.

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

If you have an infection, it is important to treat it as soon as possible. Contact the hospital straight away on the 24-hour contact number you have 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.

Symptoms of an infection include:

  • feeling shivery
  • a sore throat
  • a cough
  • diarrhoea
  • needing to pass urine often.

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.

Bruising and bleeding

Chemotherapy can reduce the number of platelets in the blood. Platelets are cells that help the blood to clot. Tell your doctor if you have any bruising or bleeding that you cannot ex-plain. This includes:

  • nosebleeds
  • bleeding gums
  • tiny red or purple spots on the skin that may look like a rash
  • bleeding from the rectum (back passage)
  • blood in the pee (urine).

Some people may need a drip to give them extra platelets. This is called a platelet transfusion.

Anaemia (low number of red blood cells)

This treatment can reduce the number of red blood cells in your blood. These cells carry oxygen around the body. If the number of red blood cells is low, you may be tired and breathless. Tell your doctor or nurse if you feel like this. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

Feeling sick

You may feel sick in the first few days after this treatment. Your doctor will give you anti-sickness drugs to help prevent or control sickness. 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 and eat small amounts often. If you continue to feel sick, or if you vomit more than once in 24-hours, contact the hospital as soon as possible. They will give you advice and may change the anti-sickness drug to one that works better for you.

Loss of appetite

This treatment can affect your appetite. Do not worry if you do not eat much for a day or two. But if your appetite does not come back after a few days, tell your nurse or dietitian. They will give you advice. They may give you food or drink supplements.

Changes to your taste

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.

Sore mouth

You may get a sore mouth or mouth ulcers. This can make you more likely to get a mouth infection.

Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.

If your mouth 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.

Teeth problems

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

Feeling tired is a common side effect. 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 operate machinery.

Diarrhoea

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 (31/2 pints) of fluids each day
  • avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods
  • contact the hospital for advice.

Constipation

This treatment can cause constipation. 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.

Tummy pain

You may get pain or discomfort in your tummy (abdomen), feel bloated or have indigestion or wind. Your doctor can give you drugs to help improve these symptoms. Tell them if the pain does not improve or if it gets worse.

Hair loss

Your hair will get thinner or you may lose all the hair from your head. You may also lose your eyelashes, eyebrows or 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. It is important to cover your head to protect your scalp when you are out in the sun.

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

Skin changes

Pentostatin may affect the skin. Your doctor or nurse can tell you what to expect. If the skin feels dry, try using an unperfumed moisturising cream every day. Pentostatin can cause a rash, which may be itchy. 

Sometimes the skin may change colour slightly during treatment. It may also be more sensi-tive to the sun. Use suncream and take care if you are out in the sun.

Always tell your doctor or nurse about any changes to the skin. They can give you advice and may give you creams or medicines to help. Usually the skin returns to normal when treatment finishes.

Very rarely, a much more serious skin condition can develop. Some people get a skin rash that turns into blisters. Sometimes the skin can peel. Contact the hospital straight away if this happens to you.

Numb or tingling hands or feet (peripheral neuropathy)

This treatment affects 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.

Eye problems

This treatment may make your eyes feel sore, red and itchy (conjunctivitis). Your doctor will prescribe eye drops to help prevent this. Your pharmacist will tell you how to use your eye drops. It is important to follow their advice.

It 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.

Hearing changes

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.

Effects on the liver

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.

Problems passing urine

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.

Effects on the kidneys

This treatment can affect how your kidneys work. This is usually mild and goes back to normal after treatment. You will have blood tests to check how well your kidneys are working.

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

Muscle or joint pain

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.

Effects on the nervous system

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.

Difficulty getting an erection

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

Headaches

This treatment may cause headaches. If this happens, tell your doctor or nurse. They can give you painkillers.

Less common side effects

Effects on the heart

Chemotherapy can affect the way the heart works. You may have tests to see how well your heart is working. These may be done before, during and sometimes after treatment. If the treatment is causing heart problems, your doctor can change the type of chemotherapy you are having.

Contact a doctor straight away if you:

  • have pain or tightness in your chest
  • feel breathless or dizzy
  • feel your heart is beating too fast or too slowly.

Other conditions can cause these symptoms, but it is important to get them checked by a doctor.

Effects on the lungs

This treatment can cause changes to the lungs. Tell your doctor if you develop:

  • a cough
  • wheezing
  • a fever (high temperature)
  • breathlessness.

You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.

Raised levels of uric acid in the blood (tumour lysis syndrome)

This treatment may cause the cancer cells to break down quickly. This releases uric acid (a waste product) into the blood. The kidneys usually get rid of uric acid but may not be able cope with large amounts. Too much uric acid can cause swelling and pain in the joints (gout).

Your doctor may give you drugs to help prevent this. Drinking at least 2 litres (3½ pints) of fluid a day will also help. You will have regular blood tests to check the uric acid levels.

Leaking from tiny blood vessels (capillary leak syndrome)

Rarely, this treatment can cause fluid to leak from tiny blood vessels called capillaries. This can cause low blood pressure and make you very unwell.

The first symptoms may be similar to a head cold with a runny nose. Contact your doctor straight away if you:

  • feel faint or dizzy
  • feel sick and have diarrhoea
  • feel breathless
  • have aching or swollen legs.

Other information

Blood irradiation

Any blood or platelet transfusions you have after this treatment, should 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 to remind your hospital team that you need irradiated blood or platelets.

Late effects and second cancer

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.

Blood clot risk

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

  • pain, redness or swelling in a leg or arm
  • breathlessness
  • chest pain.

If you have any of these symptoms, contact a doctor straight away.

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

Other medicines

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

Your doctor or nurse may talk to you about vaccinations. These help reduce your risk of getting infections.

Doctors usually recommend that you have a flu jab, which is an inactivated vaccination. People with weak immune systems can have this type of vaccination.

If your immune system is weak, you need to avoid live vaccinations such as shingles. Your cancer doctor or GP can tell you more about live vaccinations.

Contraception

Your doctor will advise you not to get pregnant or make someone pregnant while having this treatment and for some time afterwards. The drugs may harm the developing baby. It is important to use effective contraception.

Breastfeeding

Women are advised not to breastfeed while having this treatment. This is because the drugs could be passed to the baby through breast milk.

Fertility

Some cancer drugs can affect whether you can get pregnant or make someone pregnant.

If you are a woman, your periods may become irregular or stop. This may be temporary, but for some women it is permanent. Your menopause may start sooner than it would have done.

There may be ways to preserve fertility for men and women. If you are worried about fertility, it is important to talk with your doctor before you start treatment.

Sex

If you have sex during this course of chemotherapy, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluids.

Medical and dental treatment

If you need medical treatment for any reason other than cancer, always tell the doctors and nurses that 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.

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