Information for carers of children or young people having mIBG and topotecan (MATIN) 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.

MATIN is short for mIBG and topotecan in neuroblastoma. 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. This includes neuroblastoma. 

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 neuroblastoma 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).  

Topotecan is a chemotherapy drug, which can be given on its own or with other drugs. Topotecan acts as a radiosensitiser with the mIBG, meaning that it makes the neuroblastoma cells easier to kill with the radiation therapy.

The MATIN treatment is given on week one and week three of your child’s stay on the ward. Your child’s blood and radiation levels will be checked regularly by the ward staff. It is likely that your child will need to remain in hospital for up to 4 weeks. This treatment can be given with a curative intent (curing the disease) or a palliative intent (pain and symptom relief).  

Please see the schedule below for the MATIN protocol: 

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 neuroblastoma cells, and therefore how suitable MATIN treatment 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 MATIN treatment, 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.  

The MATIN treatment is a high-dose treatment which kills bone marrow stem cells as well as the neuroblastoma cells. Stem cells are very early blood cells in the bone marrow that develop into red blood cells, white blood cells and platelets. We need stem cells to survive. 

Before MATIN treatment, stem cells from your child’s blood will be collected or “harvested”. These stem cells will be returned into a vein through a drip after MATIN treatment to replace those that the treatment has killed. It is possible that your child has already had a stem cell collection and re-infusion for high-dose chemotherapy, or maybe this is planned for the future. 

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

Your child should not have MATIN treatment if they are pregnant or breastfeeding. You must tell the staff if there is any chance of them 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).

Fig.3 Relatives stay area.   

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 topotecan and mIBG is given by doctors. This procedure can take up to thirty minutes for the topotecan and forty-five minutes for the mIBG.  

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 MATIN 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 MATIN treatment 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. After the first day, topotecan only will then be given for the next four days.  

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 neuroblastoma 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, please tell the nursing staff 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 the risk of contamination in the bathroom.  
• Please double flush the toilet.

Your child will stay in the protected room most of the time during 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 brought in 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 MATIN 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 consent form, you 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 I 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 approximately four weeks, although a longer stay is sometimes necessary. Your child will be discharged from UCH and transferred to your local hospital. Your child’s referring hospital will organise the re-infusion of the stem cells that were collected before treatment.  

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 until and the contact details for the radiotherapy physics department.  

You and your child should always carry this card with you after leaving hospital, until the date indicated on the card. If your child attends another healthcare setting during the restriction period, the yellow card must be shown to staff. 

Depending on your child’s radiation levels, they may need to avoid being in close contact with people for prolonged periods e.g., sharing a bed, particularly other children and pregnant individuals.  

Your child should not fly until they have reached a low radiation level which is determined by the radiotherapy medical physics team. It may take several days to reach this level. 

Typically, a child will require a week at home before they can return to school. You must therefore not arrange any important engagements for at least two weeks after your child’s admission to hospital.  

If you wish for your child’s restrictions to be lifted earlier, we may recommend that you return to the hospital to be re-monitored. The radiotherapy physics team will discuss this with you before you are discharged from the ward. If you live some distance from UCH, it may be possible for re-monitoring to take place at a local hospital, with nuclear medicine facilities, with prior arrangement.

MATIN treatment can cause: 

• Low red blood cells (anaemia). If your child’s red blood cells are low, symptoms may include tiredness, shortness of breath, heart palpitations and pale skin. 
• Low white blood cells, especially neutrophils which fight infection (neutropenia). If your child’s neutrophils are low, they may experience signs of an infection. For example, this may include fever, high temperature of 38c or above, flu-like symptoms and tiredness. 
• Low platelets which clot blood (thrombocytopenia). Low platelets can cause tiredness, lack of appetite, developing bruises easily and bleeding in the mouth, nose and gums.   

These effects may take up to four to six weeks to happen. They are usually temporary and after a period of time the blood count recovers. The doctors will talk to you more about all these symptoms. 

When the MATIN treatment is given your child may feel sick. However anti-sickness drugs are prescribed before treatment which will reduce the likelihood of this. Your child may also experience tiredness for a few weeks after treatment.

After finishing treatment, your child will return to his/her referring hospital. The stem cells will be re-infused to rebuild your child’s bone marrow.  

Six to eight weeks after MATIN treatment, scans and blood tests will be organised as part of your child’s follow up. Your child’s referring clinical team and the UCH team will keep in close contact with one another to provide the best possible care for your child. The results of the scans done after treatment will be discussed with you and your child after treatment at a follow up appointment.

The treatment works slowly over a period of months. The scans and blood tests are used to decide how effective each treatment has been and if any more treatment is needed.  

When treatment is completed, further scans and tests will be organised as part of your child’s follow up. Your child’s clinical oncologist will discuss this with you in more detail.

Radiation – The shortened term for ‘ionising radiation’. It is used to describe the wave or particle emitted by a substance.  

Radioactive – A term used to describe a substance that emits radiation. Radioiodine (131I) is radioactive. 

Radioisotope – A radioactive substance. For example, Iodine-131 is a radioisotope. 

Half-life – As radioisotopes emit radiation they decay and become weaker. The half-life is the amount of time it takes for a radioisotope to decay to a state in which it emits only half as much radiation. The half-life for radioiodine is eight days. 

Sv (Sievert) – A unit of radiation dose. 

Bq (Bequerel) – A unit which describes how much radioactivity is present. 

Dosemeter – A small device that is worn to measure radiation dose.  

Radiation meter – An electronic device used to detect the presence of radiation and measure radiation levels. 

Contamination – The presence of a radioisotope in an area it is not planned for it to be in. For example, the presence of a radioactive substance anywhere but in your child’s body or in the toilet. 

Lead shield – Used to stop radiation. Since lead shields are very thick and lead is a very dense material, it stops or “absorbs” almost all of the radiation.

Molecular Radiotherapy Team 

t: 020 3447 4286

t: 020 3456 7890 bleep 1089 or 1097

e: uclh.Radiotherapyisotopes@nhs.net

Molecular Radiotherapy Pathway Coordinator

t: 020 3447 1102 / 7283

T11 North Ward

t: 020 3447 1102 / 1188

Radiotherapy Medical Physics

t: 020 3456 7890 bleep 2173

If you have any concerns that you would like to discuss in confidence, please contact our PALS (Patient Advice and Liaison Service) for information and advice. 

t: 020 3447 3042 

e: uclh.pals@nhs.net

Neuroblastoma UK 

t: 020 8940 4353 

Young Lives vs Cancer (formerly CLIC Sargent) 

t: 0300 330 0803  

Teenage Cancer Trust 

t: 020 7612 0370 

e: hello@teenagecancertrust.org 

Children’s Cancer and Leukaemia Group (CCLG) 

e: info@cclg.org.uk  

Macmillan Cancer Support  

t: 0808 808 0000  

e: cancerline@macmillan.org.uk   

Cancer Research UK  

t: 0808 800 4040   

Carers UK  

t: 0808 808 7777  

e: adviceline@carersuk.org   

NHS Choices   

UCLH cannot accept responsibility for information provided by other organisations.