Information leaflet on
I-131 mIBG (meta-iodobenzylguanidine) therapy

This leaflet provides information on a radioactive therapy known as I-131 mIBG. It is used to treat some types of cancer such as medullary thyroid cancer, carcinoid tumours, neuroblastoma and phaeochromocytoma. All of these cancers are quite rare so many people have not heard of them or their treatment. Before the treatment is arranged you will have the opportunity to discuss it with your doctor. This leaflet just provides an overview of what happens.

Contact telephone numbers for more information are given at the end of the leaflet.

How is the treatment given to me?

The mIBG is attached to a radioactive form of iodine and is given to you through a drip line into your blood stream. If you have not had any surgery to remove your thyroid gland you will need to take some medication called potassium iodate before and during the treatment. This will be given to you as a tablet. The tablet prevents the I-131mIBG from going to your thyroid gland instead of the cancer cells.

What happens before I have the treatment?

Before the treatment is given we will ask you to sign a consent form and have routine blood tests taken.

Why do I need to come into hospital?

Because the treatment is radioactive it must be given to you in hospital in a specialised room equipped to deal with radiation. This is called an isotope or isolation cubicle. It is found on the Princess Margaret Ward.

Do I need to stop any medicines I am taking?

Some medicines can interfere with how mIBG works so you may need to stop or change some of your tablets. Your doctor will discuss this with you.

The most common medicines that may need to be changed are nifedipine, verapamil and amitriptyline. If your medicines are changed it will only be temporary.

Is the I-131 mIBG dangerous to others?

We try and keep unnecessary radiation exposure to others to a minimum. We will advise you on how to do this with your family and friends.

Staff will not stay with you for any longer than is needed to attend to your needs. We will wear gloves and other special clothing including protective lead apronswhilst in your room on the ward.

What facilities does the isotope cubicle have?

As well as the usual furniture including a bed and a chair, the isotope cubicle has the following facilities:

  • A small fridge
  • TV/video
  • Radio/CD / clock
  • Hairdryer
  • Phone
  • En-suite toilet and shower

Please do not bring your own electrical items into the hospital if possible. This is because we have to check them for safety.

What do I need to bring in with me?

  • Washing items such as a towel, soap, toothbrush, toothpaste, shaving kit, hair brush or comb. Please bring small travel size bottles as we suggest you leave all unused toiletries in the cubicle when you go home.
  • Several changes of clothing
  • Magazines and paperback books. Please do not bring in hardback or library books.
  • Soft drinks (small bottles 650mls or cans)

You should also bring enough money to pay for any newspapers or phone calls you may wish to make. The money for any newspapers will be collected before you go into the cubicle.

You can take moneyinto the isotope cubicle for any phone calls you might wish to make. There is a telephone in your room that will take incoming calls. We will give you the extension number when you come in. Your family and friends will be able to contact you via the main switchboard on 02920615888then ask for your extension number.

Can I have the treatment if I am pregnant?

No. We will ask if you are pregnant before we give the I-131 mIBG. If there is any doubt we will ask you to take a pregnancy test.

You will need to avoid becoming pregnant for 6 months after the I-131 mIBG treatment.

Can I father a child after treatment?

You will be advised to avoid fathering a child for four months after your treatment.

What happens on the day of the treatment?

We need you to have drunk plenty of fluids before coming in to have your treatment. When you come on to the ward you will see the ward doctor and nurse. The nurse will insert two needles in your arm or hand before your treatment can start. This allows a drip line to be set up for the I-131mIBG and one for some simple fluids to keep you hydrated in case you don’t feel like drinking much. We will also give you medicine to stop you feeling sick.

What does the treatment involve?

The physicist from the nuclear medicine department and the nurse on the ward will give you the treatment in the isotope cubicle. The I-131mIBG drip runs for 2 - 2½ hours. The length of time the simple fluids are needed varies between patients, but usually only continues for 1 day.

We will checkyour blood pressure during the I-131mIBG drip treatment.

How long will I be in the hospital?

Most people are in hospital for 4 - 7 days. We will ask you to drink plenty of fluids. If you can’t manage this the drip of simple fluids can continue.

The nuclear medicine physicist will measure the level of radiation inside of youeach day to work out when you can go home. We will ask you to lie on the bed for 5 minutes while a special monitor inside the cubicle does this. This will be repeated each day. The measurement does not hurt you.

Can I have visitors whilst in the isolation cubicle?

You can have visitors but unfortunately children and pregnant or breast-feeding women cannot visit you whilst in the isolation cubicle.

Visitors will not be allowed into your cubicle but you can speak to them on a phone in your room and another in the corridor. You will be able to see each other through a special window whilst you are talking. All visitors must speak to the ward staff before they visit.

What can I do to help?

  • Please take care not to splash the water outside the hand basin when washing, and particularly when brushing your teeth.
  • Rinse your toothbrush thoroughly after each use.
  • Take care not to splash urine outside the toilet pan.
  • Flush the toilet twice after use.
  • If possible take a daily shower.

Does anything else need to be done before I go home?

Yes. You will have a body scan to see where the radioactive I-131 mIBG has gone in your body. The scan is done in the Nuclear Medicine departmentusing a special camera. It takes about 30 minutes. We will ask you to lie down on a bed. You need to wear clean clothes so please bring in an extra set of clothing that you will not wear during your stay on the ward.

Do I have to follow any extra precautions when I go home?

You will still be radioactive for a while afterwards so we will give you advice to follow when you are at home.

When do I see the doctor again?

We will give you appointments to see the doctor in an outpatient clinic. You will have a few appointments over the following weeks. You will have blood tests and we will check how you are. We will tell you the results of your body scan at one of these visits.

Do I have more than one treatment?

Your doctor will discuss with you the total number of treatments you will have and the time gap between them. Often patients have 3 treatments with an 8 - 12 week gap between treatments.

Further information

We hope you have found this leaflet helpful. If you have any questions or want more information, please phone the Nuclear Medicine department on0292031 6237or 0292031 6238.

Velindre Cancer Centre

Velindre Road, Whitchurch, Cardiff, CF14 2TL

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

1