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What you need to know
If your child has a neuroblastoma or other neuroendocrine cancer that has not responded to treatment, I-131 MIBG therapy may be the next step.
I-131 MIBG is a medicine made by a specialized pharmacist. The drug contains a form of radioactive iodine called I-131 and metaiodobenzylguanidine (MIBG).
MIBG is very similar to a neurotransmitter chemical absorbed by neuroendocrine cells. When I-131 MIBG builds up within a tumor, it gives off radiation that destroys the cancer cells.
About the therapy
What is I-131 MIBG treatment?
Your child receives I-131 MIBG therapy by infusion. The medicine travels through your child’s bloodstream to the tumor.
Your child’s body removes the radiation not absorbed by the cancer cells through their urine. It takes two to five days for your child’s body to achieve safe radiation levels after they’ve received a dose of I-131 MIBG. The exact amount of time depends on the dose of I-131 MIBG given, the extent of the tumor being treated and your child’s kidney function.
The I-131 MIBG treatment can be very effective at destroying hard-to-treat neuroendocrine cancers. Your child will take medicines to protect other parts of the body from the radiation. Your child might experience low blood counts and thyroid problems after treatment.
Clinical trials using I-131 MIBG treatment
We have several clinical trials available that use I-131 MIBG to treat children with neuroblastoma. These are briefly summarized below:
This study administers high doses of I-131 MIBG to children with relapsed or refractory neuroblastoma. Up to three treatments may be given.
This trial utilizes lower doses of I-131 MIBG, combined with immunotherapy, to treat children with relapsed or refractory neuroblastoma. The immunotherapy consists of an antibody that attaches to neuroblastoma cells and a drug that helps your child’s immune system work better.
This is a Children’s Oncology Group (COG) trial that randomizes children with newly diagnosed neuroblastoma to receive (or not receive) 131-I MIBG as part of their initial therapy.
A phase 2 trial that combines 131I-MIBG with vorinostat to treat children with relapsed or refractory neuroblastoma. This combination resulted in a better response rate than 131I-MIBG given alone, in a prior study.
What to expect
It only takes a short time to give your child the I-131 MIBG treatment. You will spend more time preparing for the hospital stay.
Before your child gets a I-131 MIBG treatment, we take many safety precautions. We protect you and your child from the radioactive iodine with a specialized treatment room and lead shields.
Your child’s doctors and nurses train you to care for your child. We teach you how to keep yourself safe from radiation during and after the hospital stay. We also help you create plans to keep your child engaged and comfortable.
Your child’s care team monitors your child during the I-131 MIBG infusion. The treatment takes about 90 minutes and is not painful. Children usually do not feel sick.
For most children, the hardest part of I-131 MIBG treatment is staying away from others after getting the radiation. Your child remains in the hospital for two to five days. This lets most of the radiation leave the body through urination so your child can safely return home.
Things to consider
Your child needs toys and activities to stay busy in the days after treatment. Pack items that can be thrown away after treatment, such as:
Coloring books and crayons
Remember to bring any guides or information you received about your child’s care and safety.
Your child stays in a special hospital room built to contain radiation. The room includes:
A lead box at the foot of the bed to shield the urine bag, which collects radioactive urine from your child
A urine pump and system to remove radioactive urine from the room
A motorized lead door
A large mobile lead shield between your child’s bed and the door
Lead in the walls, floor and doors to keep radiation in the room
Lead shields to protect hospital staff and your family
Special waste containers
Surfaces (floors, bedrails, telephone) covered with plastic
Closed-circuit TV for communication
Television for entertainment
Video gaming system for your child’s use
After your child settles into the hospital room, their care team begins preparing for the infusion.
Your child might need a Foley catheter to collect urine. This is a small, flexible tube that a nurse places into the bladder. Although this is a simple and fast procedure, we typically have the catheter inserted while your child is heavily sedated to ensure there is minimal discomfort.
When your child’s care team is ready to begin treatment, a nuclear medicine technologist brings a syringe of I-131 MIBG into the room on a cart with a lead shield.
The doctor gives the I-131 MIBG to your child through an IV. The infusion takes about 90 minutes. You and the care team monitor your child during and after the infusion.
Our program is designed to minimize contact with your child after treatment, while still keeping them happy and safe. This reduces radiation exposure to you and health care providers.
You can expect your child to be in the hospital for two to five days. During this time:
Your child’s body expels radiation through their urine.
Your child can eat, play games, read, draw, etc.
You help care for your child by providing comfort and performing tasks like bringing in meals, helping with toileting needs, etc. You will be taught how to safely provide care while inside the 1-131 MIBG room.
You will spend much of your time in a sleep room located right next to the 1-131 MIBG room.
From the sleep room you can talk with, and see your child, utilizing our closed-circuit AV system.
Your child goes home when the radiation is at safe levels.
Once you return home, you need to continue to take precautions to protect others from low levels of radiation. This should continue for a few weeks or until your child’s doctor says your child’s radiation levels are safe. Our Radiation Safety team will provide specific guidelines for you, but here are helpful tips:
Keep your child’s contact with others to a minimum
Flush the toilet twice after your child urinates
The care team monitors your child’s health and blood counts for several weeks after treatment.
Your child’s tumor may take several weeks after treatment to shrink.
If your child’s doctor recommends I-131 MIBG therapy, you will meet with your child’s care team to discuss the treatment. You can ask questions of the radiotherapy doctor, nurse practitioner, social worker and other team members. Together they will:
Review your child’s cancer history
Talk about radiation safety
Talk about the treatment
Meet our team
A caring team for you and your child
MIBG treatment locations
We provide specialized MIBG treatments at American Family Children’s Hospital in Madison, Wis.
Support for your family
When your child receives I-131 MIBG treatment, your UW Health Kids | Carbone Cancer Center care team includes a social worker. Your social worker connects you with the services and support you need, especially after your child returns home.
Services you can access include:
Patient advocate services
Pediatric palliative care
Pediatric hematology/oncology advisory group
Pediatric cancer services
With our expertise comes compassion. Our team considers you and your child part of our family. We will be by your side every step of the way. From diagnosis through treatment and into adulthood, we will care for your child as if they are our own.Learn more