Many precautions are necessary during the treatment to reduce side effects, also for other people within the environment. Medication must be taken to protect the thyroid gland against the absorption of the radioactive MIBG. Your child's (nursing) specialist will provide instructions about (the duration of) his/her hospital admission.
The 131I MIBG is administered via an IV drip (infusion). This does present a risk of radioactive contamination from the moment it is administered. That is why the 131I-MIBG, and the hospital admission for several days thereafter, will take place within a special room. Your child will emit radioactivity, but a portion of the radioactivity will leave the body through his/her urine and feces. To prevent radioactive contamination, special measures apply to any visits to and the care of your child.
The duration of the visit and the care must be limited as much as possible; you will be instructed not to come too close to your child. We expect you to wash and clean your child yourself and to assist with eating, but intensive physical contact (such as cuddling or comforting) will not be possible. This can be quite difficult to observe, for both you and your child. Clothing and other materials (such as toys) can also be contaminated with radiation. Prior to the treatment, a radiation expert will inform you about any necessary measures to be taken.
During your child's hospital admission (typically lasting four to seven days), the radioactivity your child emits will be measured daily. As soon as this radioactivity is at an acceptable level (according to legal guidelines), your child will be allowed to go home. The radiation, however, will still not be entirely gone, and you will need to continue to follow the lifestyle rules for a period of two-three weeks. If you are pregnant, these rules are stricter. You will be informed of the necessary measures by a radiation expert prior to the treatment.
Before being discharged, an MIBG scan will be performed to examine the tumor's absorption of the MIBG. If the MIBG has been absorbed well, the treatment will only be repeated after three to four weeks.
The treatment has few side effects in the short term and is generally well tolerated. The day that the 131I MIBG is administered, patents occasionally experience nausea. A medication for nausea is standardly provided, and it usually offers sufficient relief. After a few weeks, the bone marrow's production of blood cells can decrease, particularly for the platelets. Minor wounds will take longer to heal and bleeding will not stop as quickly. However, this usually recovers over time. the long-term effects are not known.
You can ask a medical or a nursing specialist any questions you may have about the treatment.