Pentostatin is a type of chemotherapy drug. Its brand name is Nipent. You might have it as a treatment for hairy cell leukaemia and other types of leukaemia or lymphoma.
How pentostatin works
Pentostatin is one of a group of chemotherapy drugs known as anti metabolites. These drugs stop cells making and repairing DNA. DNA is the genetic material of a cell. Cancer cells need to make and repair DNA so they can grow and multiply.
How you have pentostatin
You have pentostatin as a slow injection over a few minutes. Or as a drip into your bloodstream (intravenously).
Into your bloodstream
You might have treatment through a long plastic tube that goes into a large vein in your chest. The tube stays in place throughout the course of treatment. This can be a:
- central line
- PICC line
If you don't have a central line
You might have treatment through a thin short tube (a cannula) that goes into a vein in your arm. You have a new cannula each time you have treatment.
When you have it
You have pentostatin every 2 weeks and takes about 20 to 30 minutes to have. You usually have fluids into your vein before and after the pentostatin. You usually continue treatment until the leukaemia or lymphoma is under control and for as long as you don't have any serious side effects.
You have blood tests before and during your treatment. They check your levels of blood cells and other substances in the blood. They also check how well your liver and kidneys are working.
You might also have bone marrow tests to check how well the treatment is working every 2 to 3 months.
How often and how severe the side effects are can vary from person to person. They also depend on what other treatment you are having.
When to contact your team
Your doctor, pharmacist or nurse will go through the possible side effects. They will monitor you closely during treatment and check how you are at your appointments. Contact your advice line as soon as possible if:
- you have severe side effects
- your side effects aren’t getting any better
- your side effects are getting worse
Early treatment can help manage side effects better.
We haven't listed all the side effects here. Remember it is very unlikely that you will have all of these side effects, but you might have some of them at the same time.
Common side effects
These side effects happen in more than 10 in 100 people (more than 10%). You might have one or more of them. They include:
A reaction may happen during the infusion. Symptoms can include a skin rash, itching, swelling of the lips, face or throat, breathing difficulties, fever and chills. Your nurse will give you medicines beforehand to try to prevent a reaction.
Increased risk of infection
Increased risk of getting an infection is due to a drop in white blood cells. Symptoms include a change in temperature, aching muscles, headaches, feeling cold and shivery and generally unwell. You might have other symptoms depending on where the infection is.
Infections can sometimes be life threatening. You should contact your advice line urgently if you think you have an infection.
You usually have antibiotics to take to prevent developing some infections.
This affects about 6 in 10 people (60%).
Breathlessness and looking pale
You might be breathless and look pale due to a drop in red blood cells. This is called anaemia.
Bruising, bleeding gums or nosebleeds
This is due to a drop in the number of platelets in your blood. These blood cells help the blood to clot when we cut ourselves. You may have nosebleeds or bleeding gums after brushing your teeth. Or you may have lots of tiny red spots or bruises on your arms or legs (known as petechiae).
Tiredness and weakness (fatigue)
Tiredness and weakness (fatigue) can happen during and after treatment. Doing gentle exercises each day can keep your energy up. Don't push yourself, rest when you start to feel tired and ask others for help.
This affects about 4 in 10 people (40%) who have pentostatin.
Feeling or being sick
Feeling or being sick is usually well controlled with anti sickness medicines. Avoiding fatty or fried foods, eating small meals and snacks, drinking plenty of water, and relaxation techniques can all help.
It is important to take anti sickness medicines as prescribed even if you don’t feel sick. It is easier to prevent sickness rather than treating it once it has started.
This happens in about 6 out of 10 people (60%).
Tummy (abdominal) pain
Tell your treatment team if you have this. They can check the cause and give you medicine to help.
Skin problems include a skin rash, dry skin and itching. This usually goes back to normal when your treatment finishes. Your nurse will tell you what products you can use on your skin to help.
This affects about 4 in 10 people (40%).
Sweating and chills
Let your doctor know if you are sweating more than normal or have chills. They may be able to prescribe medicines to help.
Loss of appetite and weight loss
You might not feel like eating and may lose weight. It is important to eat as much as you can. Eating several small meals and snacks throughout the day can be easier to manage. You can talk to a dietitian if you are concerned about your appetite or weight loss.
Contact your advice line if you have diarrhoea, such as if you've had 4 or more loose watery poos (stools) in 24 hours. Or if you can't drink to replace the lost fluid. Or if it carries on for more than 3 days.
Your doctor may give you anti diarrhoea medicine to take home with you after treatment. Eat less fibre, avoid raw fruits, fruit juice, cereals and vegetables, and drink plenty to replace the fluid lost.
Let your doctor or nurse know if you have headaches. They can give you painkillers such as paracetamol to help.
Joint and muscle pain
You might feel some pain from your muscles and joints. Speak to your doctor or nurse about what painkillers you can take to help with this.
You might have liver changes that are usually mild and unlikely to cause symptoms. They usually go back to normal when treatment finishes. You have regular blood tests to check for any changes in the way your liver is working.
Let your doctor or nurse know straight away if you have yellowing of the skin or whites of the eyes.
You may have difficulty breathing with wheezing and coughing. Let your healthcare team know straight away if this happens.
To help prevent kidney damage, it is important to drink plenty of water. You might also have fluids into your vein before, during and after treatment. You have blood tests before your treatments to check how well your kidneys are working. You might also have fluids into your vein before and after your treatment to help prevent this.
High temperature (fever)
If you get a high temperature, let your healthcare team know straight away. Ask them if you can take paracetamol to help lower your temperature.
Occasional side effects
These side effects happen in between 1 and 10 out of every 100 people (1 to 10%). You might have one or more of them. They include:
- changes to your mood which may make you feel depressed, more anxious and nervous
- taste changes
- dry mouth
- confusion and memory loss
- red and sore gums, mouth or lips and problems with your teeth
- seizures (fits), twitching or shaking of the body
- skin sensitivity to sunlight
- hair thinning or loss
- eye problems such as dry, painful eyes and sensitivity to light
- ear problems such as pain, loss of hearing or ringing in the ears (tinnitus)
- balance problems and dizziness
- sudden cough or breathlessness
- changes to heart muscle which can cause you to have a fast or slow heart rate, changes to your heart rhythm and chest pain
- skin cancer or another type of cancer called leukaemia
- swollen or enlarged glands (lymph nodes)
- weight gain
- erection problems and loss of interest in sex
- periods stopping
- breast mass or lump
- difficulty passing urine
- changes to levels of minerals and salts in your blood. You’ll have regular blood tests during treatment to check this
- indigestion or heartburn
- difficulty sleeping
- numbness or tingling in fingers and toes
- low or high blood pressure
- thrush infection
- swelling of your hands and feet
- loss of fluid in your body (dehydration)
- high levels of uric acid in your body (gout)
- blood clots that are life threatening; signs are pain, swelling and redness where the clot is. Feeling breathless can be a sign of a blood clot on the lung. Contact your advice line or doctor straight away if you have any of these symptoms
Rare side effects
These side effects happen in fewer than 1 in 100 people (fewer than 1%). You might have one or more of them. They include:
- inflammation of the eyelids causing red, itchy, swollen, and crusty eyelids
- bladder infection causing pain and discomfort when passing urine, needing to go more urgently and dark, cloudy and strong smelling urine
- breathing problems such as wheezing, collapsed lung (pneumothorax), and fluid around your lung
- pain in arms and legs
- inflammation of your intestines (bowel) causing you to have diarrhoea
- bleeding disorders such as idiopathic thrombocytopenia purpura (ITP)
- severe allergic reaction that can be life threatening
- heart attack
- high levels of uric acid and other substances in your body due to a break down of tumour cells (tumour lysis syndrome) - you have medicines to prevent this when you first start treatment
- severe skin reaction that may start as tender red patches which leads to peeling or blistering of the skin. You might also feel feverish and your eyes may be more sensitive to light. This is serious and could be life threatening
Coping with side effects
We have more information about side effects and tips on how to cope with them.
What else do I need to know?
Other medicines, foods and drink
Cancer drugs can interact with some other medicines and herbal products. Tell your doctor or pharmacist about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies.
Pregnancy and contraception
This treatment might harm a baby developing in the womb. It is important not to become pregnant or father a child while you're having treatment and for a least 6 months afterwards. Talk to your doctor or nurse about effective contraception before starting treatment.
It is not known whether this treatment affects fertility in people. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.
Some men might be able to store sperm before starting treatment. Some women might be able to store eggs or embryos before treatment.
Don’t breastfeed during this treatment because the drug may come through into your breast milk.
Treatment for other conditions
Always tell other doctors, nurses, pharmacists or dentists that you’re having this treatment if you need treatment for anything else, including teeth problems.
Driving and use of machinery
You may feel unwell, tired, dizzy and get sight problems. You should not drive or operate heavy machinery if you get these affects.
Don’t have immunisations with live vaccines while you’re having treatment and for up to 12 months afterwards. The length of time depends on the treatment you are having. Ask your doctor or pharmacist how long you should avoid live vaccinations.
In the UK, live vaccines include rubella, mumps, measles, BCG, yellow fever and one of the shingles vaccines called Zostavax.
You can have:
- other vaccines, but they might not give you as much protection as usual
- the flu vaccine (as an injection)
- the coronavirus (COVID-19) vaccine - talk to your doctor or pharmacist about the best time to have it in relation to your cancer treatment
Members of your household who are aged 5 years or over are also able to have the COVID-19 vaccine. This is to help lower your risk of getting COVID-19 while having cancer treatment and until your
Contact with others who have had immunisations - You can be in contact with other people who have had live vaccines as injections. Avoid close contact with people who have recently had live vaccines taken by mouth (oral vaccines) such as the oral typhoid vaccine. Sometimes people who have had the live shingles vaccine can get a shingles type rash. If this happens they should keep the area covered.
If your immune system is severely weakened, you should avoid contact with children who have had the flu vaccine as a nasal spray as this is a live vaccine. This is for 2 weeks following their vaccination.
Babies have the live rotavirus vaccine. The virus is in the baby’s poo for about 2 weeks and could make you ill if your immunity is low. Get someone else to change their nappies during this time if you can. If this isn't possible, wash your hands well after changing their nappy.
More information about this treatment
For further information about this treatment go to the electronic Medicines Compendium (eMC) website.
You can report any side effect you have to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.