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What pentostatin is

Pentostatin is a chemotherapy drug mainly used to treat hairy cell leukaemia. You may have it for some other types of leukaemia and lymphoma.

Pentostatin has the brand name Nipent. It is one of a group of chemotherapy drugs known as anti metabolites. These stop cells making and repairing DNA. DNA is the genetic material of a cell. Cancer cells need to make and repair DNA so that they can grow and multiply.

 

How you have pentostatin

Pentostatin is a clear liquid. You have it as an injection into a vein or through a drip. You may have it through a thin, short tube (a cannula) put into a vein in your arm each time you have treatment. Or you may have it through a central line, a portacath or a PICC line. These are long, plastic tubes that give the drug directly into a large vein in your chest. You have the tube put in just before your course of treatment starts and it stays in place as long as you need it.

You usually have pentostatin chemotherapy every 2 weeks. It takes about 20 to 30 minutes to have the drip. You usually also have fluids into your vein before and after the pentostatin. You usually continue the treatment until the leukaemia is under control.

The side effects of pentostatin are listed below. You can use the links to find out more about each side effect. Or you can go to the cancer drug side effects section.

 

Common side effects

More than 10 in every 100 people have one or more of the side effects listed below.

A temporary drop in the number of blood cells made by the bone marrow, causing

  • An increased risk of getting an infection from a drop in white blood cells – it is harder to fight infections and you can become very ill. You may have headaches, aching muscles, a cough, sore throat, pain passing urine or feel cold and shivery
  • Tiredness and breathlessness due to a drop in red blood cells (anaemia) – you may need a blood transfusion
  • Bruising more easily due to a drop in platelets – you may have nosebleeds, bleeding gums after brushing your teeth, or lots of tiny red spots or bruises on your arms or legs (known as petechia)

Some of these side effects can be life threatening, particularly infections. Contact your doctor or nurse if you have any of these effects. Your doctor will check your blood counts regularly to see how well your bone marrow is working.

Other common side effects include

  • Fatigue (tiredness) during and after treatment – most people find their energy levels are back to normal from 6 months to a year after their treatment finishes
  • Feeling or being sick is usually moderate and most likely to start within 12 to 15 hours after having treatment – it is usually easily controlled with anti sickness injections and tablets so tell your doctor or nurse if you still have sickness
  • Stomach pain
  • A skin rash affects about 1 in 3 people (30%) and may be itchy
  • Loss of appetite
  • Diarrhoea or blood in the stools – drink plenty of fluids and let your doctor or nurse know if it continues for more than 3 days or is severe. You can have medicines to help
  • Headaches
  • Pain in the muscles, bones or joints
  • Liver changes that are unlikely to cause symptoms and go back to normal after the treatment – let your doctor or nurse know straight away if you have yellowing of the skin or whites of the eyes
 

Occasional side effects

Between 1 and 10 in every 100 people have one or more of these.

  • Indigestion
  • A cough
  • Sleep problems
  • Constipation – drink plenty of fluids and let your doctor or nurse know if it lasts for more than 3 days as you can have laxatives to help
  • Depression or mood swings, anxiety, nervousness, or strange dreams or thoughts
  • Taste changes
  • A dry mouth
  • Confusion and memory loss
  • Fits (seizures) – shaking of the body or limbs
  • A severe rash and flaking of the skin
  • Skin sensitivity to sunlight – don’t sit out in the sun, and do cover up or use sun block on exposed skin
  • Hair loss or thinning
  • Dry eyes or sore eyes – you may be more at risk of eye infections
  • Your eyes may be more sensitive to light and you may also have changes in eyesight
  • Ringing in the ears (tinnitus)
  • Ear pain or deafness
  • Balance problems and dizziness
  • Blood clot in the lung – let your doctor or nurse know straight away if you have a sudden cough or breathlessness
  • Changes to heart muscle, which is usually temporary but for a small number of people may be permanent. Your doctor will check your heart before and during your treatment
  • An increased risk of non melanoma skin cancers or leukaemia some years after the treatment
  • Women may stop having periods (amenorrhoea) but this may be temporary
  • Erection problems for men
  • Swollen, painful joints in the feet (gout)
  • Kidney changes that are unlikely to cause symptoms – your kidneys will usually go back to normal when treatment is finished, but you will have regular blood tests to check how well your kidneys are working
  • Numbness or tingling in fingers and toes can cause difficulty with fiddly things such as doing up buttons. This starts within a few days or weeks and usually goes within a few months of finishing treatment
  • Low blood pressure
 

Rare side effects

Fewer than 1 in 100 people have these.

  • An allergic reaction is very rare but tell your doctor or nurse straight away if you have muscle aches, fever or chills
  • High uric acid levels in the blood due to the breakdown of cancer cells (tumour lysis syndrome) – you will have regular blood tests to check your uric acid levels and may have a medicine to take. Drinking plenty of fluids helps to flush out the excess uric acid
  • Headaches
  • Ear problems, such as pain, ringing in your ears, or feeling off balance
  • Drooping of your eyelid
  • Women may stop having periods (amenorrhoea), but this may only be temporary
  • Loss of fertility – you may not be able to become pregnant or father a child after treatment with this drug. Talk to your doctor before starting treatment if you plan to have a baby in the future
  • Severe breathing problems – let your doctor or nurse know straight away if you have this
 

Important points to remember

The side effects above may be mild or more severe. A side effect may get better or worse through your course of treatment, or more side effects may develop as the course goes on. This depends on

  • How many times you've had the drug before
  • Your general health
  • The amount of the drug you have (the dose)
  • Other drugs you are having

Talk to your doctor, pharmacist or nurse about all your side effects so they can help you manage them. They can give you advice or reassure you. Your nurse will give you a contact number to ring if you have any questions or problems. If in doubt, call them.

Tell your doctor about any other medicines you are taking, including vitamins, herbal supplements and over the counter remedies – some drugs can react together. Medicines that may react with pentostatin include

  • Some other cancer treatments
  • Some anti viral drugs
  • Some medicines used to treat gout or kidney stones

Pentostatin may harm a baby developing in the womb and it is not advisable to become pregnant or father a child if you are having this drug. Talk about contraception with your doctor or nurse before having the treatment if there is any chance you or your partner could become pregnant. You should use reliable contraception during treatment. Men need to continue using contraception for at least 6 months afterwards.

Breastfeeding is not advisable during this treatment because the drug may come through in the breast milk.

 

Immunisations and chemotherapy

You should not have immunisations with live vaccines while you are having chemotherapy or for at least 6 months afterwards. In the UK, these include rubella, mumps, measles (usually given together as MMR), BCG, yellow fever and Zostavax (shingles vaccine).

You can have other vaccines, but they may not give you as much protection as usual until your immune system has fully recovered from your chemotherapy. It is safe to have the flu vaccine.

It is safe for you to be in contact with other people who've had live vaccines as injections. There can be problems with vaccines you take by mouth (oral vaccines), but not many people in the UK have these now. So there is usually no problem in being with any baby or child who has recently had any vaccination in the UK. You might need to make sure that you aren't in contact with anyone who has had oral polio, cholera or typhoid vaccination recently, particularly if you live abroad.

 

More information about pentostatin

This page does not list all the very rare side effects of this treatment that are very unlikely to affect you. For further information look at the Electronic Medicines Compendium website at www.medicines.org.uk.

If you have a side effect not mentioned here that you think may be due to this treatment you can report it to the Medicines Health and Regulatory Authority (MHRA) at www.mhra.gov.uk.

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Updated: 22 May 2013