Information for carers of children or young people having mIBG treatment

We want to involve you and your child in all the decisions about their care and treatment. If you decide to go ahead with treatment, by law, we must ask for your consent and will ask you to sign a consent form. This confirms that you agree to your child having the procedure and understand what it involves.  

Staff will explain all the risks, benefits and possible alternatives before they ask you to sign a consent form. If you are unsure about any aspect of your child’s proposed treatment, please do not hesitate to speak to the team looking after your child. 

mIBG, pronounced meta-iodobenzyl guanidine, is the name of a drug, which targets specific tumours called neuroendocrine tumours. These tumours are a group of rare cancers that develop in the neuroendocrine system, a system made up of nerve and gland cells that produce hormones. Neuroendocrine tumours include phaeochromocytoma, paraganglioma, metastatic neuroblastoma, medullary thyroid, and carcinoid tumours.

mIBG is attached to iodine-131 (I-131), a form of iodine which is radioactive. The mIBG carries the radioactive iodine-131 in the bloodstream to the cancer cells where it is absorbed. The iodine-131 delivers radiation to the cancer cells and kills them. Combining radioactivity with drugs that target specific tumour cells is called molecular radiotherapy (MRT).  

Usually, your child will have multiple treatments that are given eight to twelve weeks apart depending on any side effects they may experience. This treatment can be given with a curative intent (curing the disease) or a palliative intent (pain and symptom relief). 

At the first visit, you and your child will meet the consultant clinical oncologist who will talk to you about the treatment plan and explain what you can expect. You will also meet the other members of the medical team who will be treating your child. You will have a chance to ask any questions you may have at this appointment.  

We will take you to the paediatric ward to meet some of the nurses who will be looking after your child during their stay. We will show you the protected rooms in which your child will be staying for the duration of their treatment. You will also meet the molecular radiotherapy team who will coordinate your child’s care and treatment.  

Visiting the ward and treatment rooms, and meeting the staff involved in your child’s care, will help you to know what to expect. It will also help to ensure your child is comfortable and familiar with what is going on (Fig 1.).  

We can contact the play specialists in advance to ensure toys and activities your child enjoys are available in the room for the duration of your child’s stay. 

Before coming into hospital your child will have diagnostic mIBG scans in the nuclear medicine department. These scans will help the medical team plan your child’s treatment. They will be able to measure how well the mIBG is absorbed by the cancer cells, and therefore how suitable mIBG therapy is for your child. Other scans may also be needed, and we will advise you if this is the case. These scans may be done at your local hospital, or here at University College Hospital (UCH). 

We also need to make sure your child is fit and well enough to have the mIBG therapy, and that they have no other health issues. A wide range of specialists will be involved in making this decision before treatment. Your child will have a range of tests and scans to check that they meet all the criteria. These will be organised by the radioisotope team.  

It is important that the medical team are told of all the medication your child is taking or has been prescribed. Some medications may affect uptake of mIBG by neuroendocrine tumour cells and may need to be stopped one or two weeks before treatment.  

Your child should not have mIBG treatment if they are pregnant or breastfeeding. You must tell the staff if there is any chance of your child being pregnant.  

All individuals with internal reproductive organs (a uterus) over the age of 12 will have a urine pregnancy test before treatment starts. Your child should not become pregnant for at least six months after mIBG treatment. Individuals with external reproductive organs (testes) should not conceive a child for at least four months after mIBG treatment.  

The MRT radiographers will discuss any issues around sex, contraception and intimacy with your child if it is appropriate.

Your child will be admitted to hospital a day before their treatment is due to start, so we can check they are well enough to have treatment. Your child will be admitted to the paediatric ward on the 11th floor of the main UCH building (T11North or T11N). They will stay in a protected side room with en-suite shower and toilet (Fig. 2) 

On arrival on the ward, you and your child will be greeted by a nurse who will check your child’s details, explain the ward routine, and show you around the ward and the available facilities. Your child will have a named nurse who will be responsible for their care throughout their stay on the ward.  

There is space outside the protected room, where one parent/carer can stay for the duration of your child’s treatment. (Fig.3).  

During treatment, small amounts of the iodine can detach from the mIBG. If this happens, the detached or “free” iodine is absorbed by the thyroid gland. This may cause thyroid gland problems in the future. To stop the thyroid gland from absorbing the iodine, we will give your child a course of potassium iodate, starting one day before the treatment and continuing daily during the treatment. There are no known side effects from potassium iodate.  

Your child will have a blood test on T11N and any other necessary investigations before starting treatment.

On the day of the mIBG treatment, your child will be given anti-sickness drugs to reduce the risk of them feeling sick or being sick after treatment.  

Your child will also be given intravenous fluids before the treatment. These fluids will continue for 48 hours. The fluids will help flush the mIBG through your child’s body and reduce any radiation dose to the bladder. 

The mIBG is given by doctors. When they give your child the treatment, they will stand behind a large silver protective trolley (pictured below).  

Your child will be observed and monitored, while the mIBG treatment is being given, to ensure they are managing the treatment. The observations include regular blood pressure measurements.  

Your child may experience discomfort at the site of the tumour whilst the mIGB is being given. Your child may have some brief periods of flushing where they become very warm, and their face may go red. This typically lasts for only a few minutes. 

During their stay, your child will have a whole-body scan, or a series of scans, in the nuclear medicine department. The scans produce a map to see where the mIBG has been absorbed in your child’s body. You will be given the appointment times by the MRT radiographers. A porter will collect you and your child and take you both directly to the nuclear medicine department for the scan (do not carry your child to the scan). We ask that your child takes a shower prior to their scan and changes into fresh clothes and clean nonslip socks, or slippers should be put on when leaving the room, which will be provided by the team. 

Your child can watch something on an iPad or tablet or listen to music during their scan. The play specialist will be available to support your child during the scans.

The mIBG will enter your child’s bloodstream and be absorbed by the neuroendocrine tumour cells. Most of the remaining mIBG will be excreted through your child’s urine over the following days. The mIBG can also be excreted in other bodily substances such as saliva, vomit, faeces, sweat and oils secreted by the skin.  

The radiation from mIBG is treating your child’s cancer but it could be a risk to other people. Your child will therefore stay in a protected room to reduce any radiation exposure to other people. 

Strict regulations state that patients receiving radioactive drugs must stay in hospital until most of it has been excreted. Other rules are: 

• Your child must not leave the room. 
• Your child must only use the shower and toilet in the en-suite. 
• The en-suite shower and toilet cannot be used by anyone else. 
• Your child must only wash and dry their hands using the paper towels in the room and throw of them in the yellow bin bags. 
• One of the two lead-lined doors to the en-suite must always be closed (Fig. 4)  

• Anyone entering the room must wear protective shoe covers, aprons, and gloves. 
• Anyone entering the room must wear a radiation monitor and record their measurements. 
• If your child feels sick, nursing staff must be told immediately. Your child can use the toilet in the en-suite if they were to be sick. The nurses can also provide a disposable bowl.  
• If your child wears nappies or pull-ups, please discuss with the radioisotope radiographers, who will advise on their disposal during admission.  
• Please encourage all children or young people to sit, rather than stand, whilst urinating, to minimise risk of contamination in the bathroom.  
• Please double flush the toilet. 

our child will remain in the protected room most of the time during their treatment. Exceptions include going to the nuclear medicine department for scans or in a medical emergency.  

Your child should only bring items they will not need to take home immediately. This is because any personal possessions you bring in with you will become contaminated with radiation. You may need to leave some things behind if they carry traces of radioactivity. The radiotherapy physics team will monitor the radiation levels of your child’s belongings and let you know if there are any items they need to store. These items may need to be kept for up to three months. If you or your child would like them back, please let us know and we can contact you when they are ready to be collected. 

We will ask your child what their interests are, and the hospital’s play specialists will try to provide activities and toys which your child particularly enjoys. This means that they will not need to bring items from home. Your child will be able to play video games, watch TV and/or DVDs or play with the toys which are all provided in the room (Fig.5).

Old and comfortable clothes are best for your child to wear while they are admitted to hospital.  

The strength of the Wi-Fi signal in the room can sometimes vary. We are working to improve this. It is best not to rely on the Wi-Fi. If you are uncertain on what things you can bring in due to the risk of radiation contamination, please ask the radioisotope radiographers.

We recommend that at least one person stays throughout your child’s stay in hospital to help with their care. You may be asked to take some radiation measurements for your child during the week. This will help the team to accurately calculate the dose needed for future mIBG treatments. The nuclear medicine team will give you more information about this when your child is on the ward.  

There are legal limits to the amount of radiation people can have. It is important that we keep your personal radiation exposure as low as possible, while allowing you to spend as much time as possible with your child. We will show you ways in which you can minimise your personal radiation exposure. Following training, you will be asked to sign a consent form to be a carer and comforter. By signing this you will agree to receive a higher radiation dose than normally permitted and can therefore spend as much time with your child as they require.  

To minimise and record your personal radiation exposure you must: 

• Always wear protective shoe covers, aprons, and gloves in the room. 
• Always wear a radiation monitor. 
• Minimise the time you spend with your child and maximise the distance between you when possible.  
• Stay behind the mobile lead shields placed round your child’s bed as much as possible. 
• Whilst your child is sleeping, playing or resting, we will advise you to stay in the relatives stay area. 

As a carer and comforter, you will not be radioactive and so you may wish to swap with other family members and return home to visit other children. You may also wish to bring with you your mobile phone, tablet, laptop or Kindle during your child’s stay, however they will always need to remain in the parent area.  There is guest Wi-Fi available for visitors of UCLH. 

Please tell us if your child has any accidents with bodily fluids while in hospital. It may be harmful to yourself and others if you fail to tell us.

Adult visitors, other than parents, who are not pregnant, should keep visits to a minimum (no more than five minutes per day). They must also sit outside the protected room behind a lead screen. All visitors must report to the nurse’s station on arrival.

Visitors under 18 and any pregnant or breastfeeding family members cannot visit under any circumstances. 

T11N is a paediatric oncology ward. The protected rooms are reserved for children and adolescents of all ages admitted for radioactive treatments. Your child will have a nurse who will be responsible for their care throughout their stay on the ward. 

Meals will be brought to your child in their room three times a day. Meals will be served on paper plates with plastic cutlery for easy disposal. If your child does not get a meal, please let a nurse know. Please also let us know if your child has any special dietary needs. 

A microwave and kettle are also available in the parents’ room on T11N. Tea, coffee, juices, cereals and some other food items will also be available. Food from outside the hospital is permitted and a wide range of shops and food outlets can be found a short distance from UCH. Carers and comforters should only consume food inside the relatives stay area. You are not allowed to eat in the lobby or patient areas. A small table will be provided for you.  

Accommodation may also be booked for you and other family members to stay during your child’s treatment. Please speak to your MRT radiographers for further information.

We try to limit the number of times we change the bed linen while your child is having treatment, to reduce the amount of radioactive waste. If your child has an accident, the nurses will give you fresh linen.  

All waste needs to be kept in the patient room and will be monitored by physics before being taken away. If waste begins to build up in the room, please let the nurses know.

You should plan for your child to be in hospital for five to seven days for each course treatment, although a longer stay is sometimes necessary.  

The radiotherapy physics team will give you a yellow card on discharge. The card has details of your child’s treatment, any restrictions in place at the time of their discharge, the time the restrictions are applied till and contact details for the radiotherapy physics department.