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Ipilimumab 589

This leaflet provides information for patients having treatment with ipilimumab.  The leaflet will explain what ipilimumab is and when and how it is given.  It will also tell you about common side effects that you may experience.  Contact telephone numbers and details of how to obtain further information on ipilimumab are given at the end of the leaflet.

What is ipilimumab and why am I having it?

Ipilimumab is a treatment which helps your immune system to attack and destroy cancer cells.  This is not a chemotherapy drug

Ipilimumab is used to treat a type of skin cancer called melanoma.  Your doctor has prescribed this treatment because the previous treatments that you have been prescribed have stopped working.  

How often will I receive ipilimumab?

For this treatment to be most effective, it is given at specific time intervals.  For patients with advanced melanoma it is usual to have ipilimumab every 3 weeks for 4 cycles.  

How often will I see the specialist team?

You will need to be seen in the outpatient clinic once every 3 weeks. This will be a few days before each treatment with ipilimumab.  At each outpatient clinic the medical team who prescribes your ipilimumab will check how you are feeling and discuss any problems you may have.

A few days later, on the morning of your treatment we will telephone you to check how you are feeling and to see if you are well enough to have your ipilimumab.

How is ipilimumab given?

Ipilimumab is given through a drip into a vein in the back of your hand or arm.

Where will my treatment be given?

The treatments will be given in the day case treatment areas at Velindre.

How long will I be in the hospital?

The Ipilimumab treatment is given over approximately 90 minutes please allow 2 to 3 hours for your appointment

Can I bring relatives and friends with me? 

You are welcome to bring someone to stay with you during your treatment. Space is limited so there is not usually room for more than one person.  Treatment areas are not suitable for young children.

Reactions during the treatment 

If you experience any of the following during the treatment please tell your nurse straight away:

  • Feeling hot and feverish
  • Chills or shivering
  • Headache
  • Dizziness or faintness
  • Problems with breathing
  • Rash
  • Feeling sick or vomiting

If any of these occur we will slow down or stop the ipilimumab until you feel better.  The treatment can then start again, usually without any further problems.

What are the possible side effects?

Some people have very few side effects whilst others may experience more.  Most of the side effects happen because Ipilimumab affects the immune system causing inflammation of other parts of the body such as the skin, the bowels and hormone producing glands. This can be particularly severe in about 15% of patients. Most if not all severe side effects can be controlled by the use of steroid medication immediately either as tablets or through a drip.  Hospital admission may become necessary for severe immune related reactions. 

Mostly side effects are mild and can be easily managed at home. But it is important that if you have more severe side effects that you contact Velindre Cancer Centre. The telephone number is on page 8. 

 

Effects on the bowels  

Diarrhoea

You may have diarrhoea.  If this occurs it is important that you drink plenty of fluids.  We will give you medication to take if you get diarrhoea,

Please note:

 If you have any of the symptoms below you must inform Velindre Cancer Centre immediately, the telephone numbers are on page 8. 

  • 4 or more bowel movements in 24 hours above what is normal for you.
  • if you have any problems with diarrhoea or an increase in bowel movements which lasts for more than 3 days.
  • If you have severe stomach pains
  • Or if you have blood or mucus in your bowel motions

There is a risk of inflammation of the bowel (colitis) or rupture of the bowel (perforation) in a small minority of patients. 

Effects on the liver

This is rare, but if you are affected you may feel more tired than usual and may also feel sick or vomit.  Your doctor will give you anti sickness medicine to take.  

Please contact Velindre Cancer Centre if:

  • If you vomit more than once in 24 hours despite taking anti sickness medication.

More severe effects on the liver are very rare but can be very serious so you should contact Velindre Cancer Centre if:

  • If you have yellowing of your skin and the whites of your eyes.
  • If you have darker urine than normal.
  • If you have unusual bruising or bleeding

Effects on the skin

You may develop an itching skin rash which can be treated with moisturising cream.  You may get a sore mouth if this happens we can recommend mouth washes.  However if you get a severe skin reaction you may need to be treated in hospital. 

Please contact Velindre Cancer Centre if:

  • If the rash covers more than half of your body and is painful.
  • If you have large blisters or your skin is peeling.
  • If your skin feels very raw.
  • If you have a fever.
  • If you have aching joints.
  • If you have itchy eyes.
  • If you have mouth ulcers.  

Effects on the nerves

You may have numbness or tingling in your hands or feet.  

Please contact Velindre Cancer Centre if:

  • If numbness in your hands and feet is severe.
  • If you develop weakness in your arms or legs
  • If you become dizzy or giddy.
  • If you become very drowsy and have difficulty staying awake.

 Effects on your hormone glands

  • Ipilimumab can cause inflammation of the glands that produce the different hormones (chemicals that control many of the body’s functions) in the body. Symptoms will vary depending on which glands are affected.

It is important to contact Velindre cancer Centre if: 

  • If you have a headache that will not go away.
  • If you have nausea and vomiting.
  • If you have severe mood swings.
  • If you feel forgetful and confused
  • severe tiredness (mild to moderate tiredness is common with ipilimumab)

Effects on the eyes

Please contact Velindre Cancer Centre if you have:

  • If you have sore eyes.
  • If you have red eyes.
  • If you have blurred or double vision.
  • Tiredness and fatigue 

Ipilimumab can make you feel more tired than usual.  It is important to listen to your body and rest if you need to, but carry out your normal activities if you feel able.  Some people find it beneficial to take gentle exercise as well as taking rest.  If you are sleeping more than 50% during the daytime you need to contact Velindre Cancer Centre on the number on page 8.

Side effects may continue for up to 6 months after treatment.  If you have any side effects contact your consultant. If you are admitted to hospital or see your GP during this period, inform the doctor you have had Ipilimumab, an immune therapy and give them your alert card. 

Blood clots

A diagnosis of cancer can increase your risk of developing a blood clot (thrombosis), and having cancer treatment may increase this risk further.  It is important to tell your doctor immediately if you have symptoms such as pain, redness and swelling in your leg, or breathlessness and chest pain.  

Blood clots can be very serious.  However, most clots can usually be successfully treated with drugs to thin the blood.  Your doctor or nurse can give you more information.
 

Other information

It is important you do not become pregnant, breastfeed or father a child whilst having ipilimumab treatment and for a year after treatment 

Sometimes cancer drugs can have very serious side effects which can be life threatening. It is important to inform Velindre cancer centre if you are concerned about any side-effects.

A diagnosis of cancer can increase your risk of developing a blood clot (thrombosis), and having cancer treatment may increase this risk further.  It is important to tell your doctor immediately if you have symptoms such as pain, redness and swelling in your leg, or breathlessness and chest pain.  

Manufacturer’s patient information leaflets

Velindre leaflets provide information about very common and commonly reported side-effects (we are unable to list all of the common side effects), for more information regarding these and the less common side-effects please refer to the manufacturers patient information leaflets, obtained from Velindre pharmacy and/or on the internet at www.medicines.org.uk. Sometimes patients may find these leaflets difficult to read however. Please ask if you would like a copy from your doctor or from Velindre pharmacy

Contact telephone numbers

Velindre Cancer Centre 029 2061 5888

If you are unwell at home and need immediate advice at any time of the day or night ask for the treatment helpline

Pharmacy department 029 2061 5888 ext 6223

Monday – Friday 9am – 5pm for queries about your medicines

Tenovus freephone 0808 808 1010

cancer helpline 

 

This leaflet was written by health professionals.  The information contained in this leaflet is evidence based.  The leaflet has been approved by doctors, nurses, pharmacists and patients.  It is reviewed and updated every 2 years.

Prepared January 2014 

Reviewed July 2017