Pentostatin (Nipent ®)
Pentostatin (Nipent ®) is a chemotherapy drug used to treat a type of leukaemia called hairy cell leukaemia.
This information should ideally be read with our general information about cancer and hairy cell leukaemia.
How pentostatin is given
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You usually have pentostatin in the chemotherapy day unit or during a stay in hospital. A chemotherapy nurse will give it to you. During treatment, you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse. This is who we mean when we mention your doctor or nurse in this information.
Before or on the day of treatment, a nurse or person trained to take blood (phlebotomist) will take a blood sample from you. This is to check that it is okay for you to have chemotherapy.
You will also see a doctor or nurse before you have chemotherapy. They will ask you about how you have been. If your blood results are alright on the day of your treatment, the pharmacist will prepare your chemotherapy. Your nurse will tell you when your treatment is likely to be ready.
Your nurse will give you anti-sickness drugs and sometimes a steroid as an injection into a vein before you start. Pentostatin is then given in one of the following ways:
through a short thin tube (cannula) that the nurse puts into a vein in your arm or hand
through a fine tube that goes under the skin of your chest and into a vein close by (central line)
through 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, which gives the treatment over 20-30 minutes. You will also be given fluids through a drip. This is to help protect your kidneys.
When the chemotherapy is being given
Some people might have side effects while they are having the chemotherapy:
Pentostatin may cause an allergic reaction while it’s being given. Your nurse will check you for this. If you have a reaction, they will treat it quickly. Signs of a reaction can include: a rash; feeling itchy, flushed or short of breath; swelling of your face or lips; feeling dizzy; having pain in your tummy, back or chest; or feeling unwell. Tell your nurse straight away if you have any of these symptoms.
Pain along the vein
If you have this, tell your nurse straight away. They will check your drip site and slow the drip to ease the pain.
If you get any of these symptoms after you get home, contact the doctor or nurse straight away on the number they gave you.
Your course of chemotherapy
You have chemotherapy as a course of several sessions (or cycles) of treatment. Pentostatin is usually given once every fortnight. Your doctor or nurse will tell you more about this and the number of cycles you are likely to have.
Possible side effects of pentostatin
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We explain the most common side effects of pentostatin here. But we don’t include all the rare ones that are unlikely to affect you.
You may get some of the side effects we mention but you are very unlikely to get all of them. If you are having other chemotherapy drugs as well, you may have some side effects that we don’t list here. Always tell your doctor or nurse about the side effects you have.
Your doctor can prescribe drugs to help control some side effects. It is very important to take them exactly as your nurse or pharmacist has explained. This means they will be more likely to work better for you. Your nurse will give you advice about managing your side effects. After your treatment is over, the side effects will start to improve.
Contact the hospital
Your nurse will give you telephone numbers for the hospital. You can call them if you feel unwell or need advice any time of day or night. Save these numbers in your phone or keep them somewhere safe
Risk of infection
Chemotherapy can reduce the number of white blood cells in your blood. This will make you more likely to get an infection. When the number of white blood cells is low, it’s called neutropenia.
Contact the hospital straight away on the contact number you’ve been given if:
your temperature goes over 37.5°C (99.5°F) or over 38°C (100.4°F), depending on the advice given by your chemotherapy team
you suddenly feel unwell, even with a normal temperature
you have symptoms of an infection – this can include feeling shaky, a sore throat, a cough, diarrhoea or needing to pass urine a lot.
The number of white blood cells usually increases steadily and returns to normal before your next treatment. You will have a blood test before having more chemotherapy. If your white blood cells are still low, your doctor may delay your treatment for a short time.
Bruising and bleeding
Pentostatin can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. Tell your doctor if you have any bruising or bleeding you can’t explain. This includes nosebleeds, bleeding gums, blood spots or rashes on the skin. Some people may need a drip to give them extra platelets.
Anaemia (low number of red blood cells)
Melphalan 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 (blood transfusion).
This may happen in the first few days after chemotherapy. Your doctor will prescribe anti-sickness (anti-emetic) drugs to help prevent or control sickness. Take the drugs exactly as your nurse or pharmacist has instructed. It’s easier to prevent sickness than to treat it after it has started.
If you still feel sick or are vomiting, contact the hospital as soon as possible. They can give you advice and change the anti-sickness drug to one that works better for you.
Loss of appetite
You may lose your appetite during your treatment. Try to eat small meals regularly. Don’t worry if you don’t eat much for a day or two. If your appetite doesn’t improve after a few days, let your nurse or dietitian know. They can give you advice on getting more calories and protein in your diet. They may give you food supplements or meal replacement drinks to try. Your doctor can prescribe some of these and you can buy them from chemists.
Your mouth may become sore and you may get ulcers. This can make you more likely to get an infection in your mouth. Gently clean your teeth and/or dentures morning and night and after meals. Use a soft-bristled or children’s toothbrush. Your nurse might ask you to rinse your mouth regularly or use mouthwashes. It’s important to follow any advice you are given and to drink plenty of fluids.
Tell your nurse or doctor if you have any problems with your mouth. They can prescribe medicines to prevent or treat mouth infections and reduce any soreness.
Feeling very tired is a common side effect. It’s often worse towards the end of treatment and for some weeks after it’s finished. Try to pace yourself and get as much rest as you need. It helps to balance this with some gentle exercise, such as short walks. If you feel sleepy, don’t drive or operate machinery. We have more information about coping with fatigue.
Your doctor can prescribe drugs to control diarrhoea. Let them know if it is severe or if it doesn’t get better. Make sure you drink at least two litres (three and a half pints) of fluids every day if you have diarrhoea.
Tummy pain and constipation
Pentostatin may make you constipated and cause tummy pain. Drinking at least two litres of fluids (three and a half pints) every day will help. Try to eat more foods that contain fibre (such as fruit, vegetables and wholemeal bread) and take some regular gentle exercise.
If you haven’t had a bowel motion for two days, contact the hospital for advice. Your doctor can prescribe laxatives to help you. Always contact the hospital straight away if you are constipated and have tummy pain or are being sick.
Your hair will thin or you may lose all the hair from your head. This usually starts after your first or second cycle of chemotherapy. It is almost always temporary and your hair will grow back after chemotherapy ends. It is important to cover your head to protect your scalp when you are out in the sun. Your nurse can give you advice about coping with hair loss.
Chemotherapy 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. Always tell your doctor or nurse about any skin changes. 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.
During treatment and for several months afterwards, you'll be more sensitive to the sun and your skin may burn more easily than usual. You can still go out in the sun, but use a suncream with a sun protection factor (SPF) of at least 30, and cover up with clothing and a hat.
Numb or tingling hands or feet
These symptoms are caused by the effect of pentostatin on nerves. It’s called peripheral neuropathy . You may also 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 in some people they may never go away. Talk to your doctor if you are worried about this.
Your eyes may be more sensitive to light and feel dry. Your doctor can prescribe eye drops to help with this. If your eyes get red and inflamed (conjunctivitis), tell your doctor. This is because you may need antibiotic eye drops.
Pentostatin may also cause blurry vision or eye pain. Always tell your doctor or nurse if you have eye pain or notice any change in your vision.
Some people may have pain or ringing in their ears (tinnitus). Rarely, pentostatin may cause some hearing loss. Tell your doctor if you notice any changes to your hearing.
Changes in the way the liver works
Pentostatin may affect how your liver works. This is usually mild and goes back to normal after treatment. You will have blood tests to check how well your liver is working.
Changes in the way the kidneys work
Pentostatin can affect how your kidneys work. You will have blood tests before and during treatment to check this. Your nurse will ask you to drink plenty of fluid. Tell them if there are any changes in how much urine you are producing.
Raised levels of uric acid (tumour lysis syndrome)
Pentostatin may cause the cancer cells to break down quickly. This releases uric acid (a waste product) into the blood. Too much uric acid can cause swelling and pain in the joints, which is called gout. Your doctor may give you tablets to help prevent this. Drinking at least two litres of fluid a day will also help. You will have regular blood tests to check the uric acid levels.
Muscle or joint pain
You may get pain in your joints or muscles for a few days after chemotherapy. Tell your doctor if this happens so they can prescribe painkillers. Let them know if the pain does not get better. Try to get plenty of rest. Taking regular warm baths may help.
Less common side effects of pentostatin
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Changes in the way the heart works
Pentostatin can affect the way the heart works. You may have tests to see how well your heart is working before, during and sometimes after treatment.
If you notice changes to your hearbeat, have pain or tightness in your chest, or feel breathless at any time during or after treatment, tell a doctor straight away. These symptoms can be caused by other conditions but it’s important to get them checked by a doctor.
Effects on the lungs
Pentostatin can cause changes to the lungs. Always tell your doctor if you develop wheezing, a cough, a fever or feel breathless. You should also let them know if any existing breathing problems get worse. If necessary, they can arrange for you to have tests to check your lungs.
Leaking from tiny blood vessels (capillary leak syndrome)
Rarely, pentostatin can cause this. It happens when fluid leaks 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 immediately if you feel faint or dizzy, sick and have diarrhoea, feel breathless, or have aching or swollen legs.
Effects on the nervous system
Pentostatin can affect the nervous system. Rarely pentostatin might make you feel drowsy or confused, or dizzy and unsteady on your feet. Some people may feel anxious or restless, have problems sleeping or experience mood changes. Tell your doctor or nurse straight away if you notice any of these symptoms. It’s important not to drive or operate machinery if you notice these effects.
Other information about pentostatin
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After treatment with pentostatin, any blood and platelets you are given should first be treated with radiation. This lowers the risk of the donated blood cells reacting against your own. It won’t 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’ll also give you a card to carry in case you’re treated at another hospital. Keep this card with you at all times and remind your hospital team that you need irradiated blood or platelets.
Blood clot risk
Cancer increases the chance of a blood clot (thrombosis) and chemotherapy can add to this. A clot can cause symptoms such as pain, redness and swelling in a leg, breathlessness and chest pain. Contact your doctor straight away if you have any of these symptoms. A blood clot is serious but your doctor can treat it with drugs that thin the blood. Your doctor or nurse can give you more information.
Some medicines can interact with chemotherapy or be harmful when you are having chemotherapy. This includes medicines you can buy in a shop or chemist. Tell your doctor about any medicines you are taking, including over-the-counter drugs, complementary therapies and herbal drugs.
Pentostatin may affect your fertility (being able to get pregnant or father a child). If you are worried about this, you can talk to your doctor or nurse before treatment starts.
Your doctor will advise you not to become pregnant or to father a child during treatment. This is because the drugs may harm a developing baby. It’s important to use effective contraception during and for a few months after chemotherapy. You can talk to your doctor or nurse about this.
If you have sex within the first couple of days of having chemotherapy you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluid.
Changes to your periods
Chemotherapy can sometimes stop the ovaries working. You may not get a period every month and they may eventually stop. In some women, this is temporary, but for others it is permanent and they start the menopause.
Women are advised not to breastfeed during treatment and for a few months after. This is in case there is chemotherapy in their breast milk.
Medical and dental treatment
If you need to go into hospital for any reason other than cancer, always tell the doctors and nurses that you are having chemotherapy. Give them contact details for your cancer doctor.
Talk to your cancer doctor or nurse if you think you need dental treatment. Always tell your dentist you are having chemotherapy.
This section has been compiled using information from a number of reliable sources including:
With thanks to Catherine Loughran, Lead Haematology Pharmacist, who reviewed this edition.
Thank you to all of the people affected by cancer who reviewed what you're reading and have helped our information to grow.
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