What to Expect

Before Admission

Clinical Preparation for Treatment

These tests and reports will need to be done at your home hospital (if other than UCSF). Your physician will send the results in advance of your arrival for your MIBG treatment.

  • Physical exam
  • Stem cell harvest (if necessary)
  • Blood tests
  • CT/MRI scan
  • Echocardiogram
  • Bone marrow aspirate & biopsy
  • MIBG scan

How to Prepare Child for Treatment

During the weeks before the MIBG treatment, it is important that patients do not take any medications that interfere with the uptake of MIBG by tumor cells, i.e. over the counter cold medicines. If you are unsure of any medications, please discuss with the MD/NP at UCSF.

A bladder catheter (called a Foley Catheter) will be placed to protect your child’s bladder from excessive radiation.

Your child will begin to take potassium iodine the morning of the MIBG infusion, to help protect the thyroid from radiation damage.

Your child will be radioactive after the MIBG infusion, and the time you can spend in the room with your child will be limited for approximately 5-7 days.

It is important to prepare your child for these procedures and isolation in a way that will benefit them.

It is important to start weaning co-sleepers prior to treatment, so their anxiety will be minimized when you must sleep away from them.

Please coordinate to have two adult caregivers to assist with care.

What Can be Brought to Hospital

Radiation contamination occurs by the direct or indirect transfer of body fluids (skin oils, sweat, saliva, urine, stool, etc.) from the patient to objects or items.

Nothing can leave the radiation isolation room without being screened by radiation safety. If an object is contaminated, it will need to be properly discarded or remain in the hospital for up to 6 months until it is no longer radioactive.

It is ok to bring such items as laptops, iPads, iPods, cell phones, hand held gaming systems, as they will be covered in plastic by the Radiation Safety Officers and will have a minimal chance of being contaminated.

Items to Bring: Coping Tools, Meds, Supplies

Plan to bring activities or movies that your child will enjoy doing on their own, such as books, crafts, cards etc.

Our Child Life Specialist will also meet with you and your child to help prepare him/her for admission the procedures and to bring other age appropriate activities to keep your child busy.

It is okay to bring your child any snacks or food they like.

We do have gaming systems and some movies (DVD/VCR). Please feel free to bring games or movies you especially like.

Favorite Items

Favorite items from home should NOT come to the hospital because they may become contaminated and have to be kept for a few months before sending back to the family. This includes patient’s clothing, pillows, stuffed animals, blankets, etc.

If possible, try to bring copies of these items that can be properly discarded or left behind at the end of hospitalization.

Other things to bring: Medication and Supplies

  • All medications that your child takes at home such as Septra (Bactrim), Zofran/Kytril or any pain medications. You may need them during your stay or on your way home.

  • Dressing and flush supplies (e.g. Heparin) for central lines

  • Bringing these will save time and money.

What is Available in Room

This is standard private room that has lead lined walls. It has a private restroom, sink, windows, and refrigerator. There are special monitors above the bed to monitor radiation levels and vital signs.

There is a television, DVD player, Wii, and Play Station 2

During Admission                                          

Typical admission schedule

Day 1: Physical exam, access central line for labs, foley catheter is placed, IV hydration starts.  Depending on protocol, chemotherapy/biologic agent may also begin. Instructions and education of safety measures for patients and caregivers will be discussed by RNs and NP.  Child Life Specialists to work with patient and family to prepare for admission.

Day 2: Loading dose of Potassium Iodine, MIBG infusion, and detailed safety teaching from Radiation Safety Officer.

Day 5: Foley removed if criteria is met, labs drawn

Day 6-8: MIBG post therapy scan, follow up discharge instructions reviewed by NP and Radiation Safety Officer, and discharge from hospital if criteria are met.

Important Considerations

Image preview MIBG ante-room                Image preview MIBG patient room  Image preview

MIBG is given as a 1.5 hour to 2 hour IV infusion through either a temporary IV usually placed in a vein in the hand or arm or through your central venous line (port-a Cath or Broviac).  IV fluids for hydration and other medicines will also be given. 

Patients who get MIBG are considered to be ‘hot’ or radioactive and special precautions are taken to care for your child during this time until the radiation level has gone down to a level where these precautions are no longer needed (usually 4-5 days).  Special care precautions include:

  • A single room in a bed surrounded by a lead shield to keep family and the staff who take care of your child from being exposed to radiation from the MIBG treatment.
  • The length of time family can visit inside the room in front of the protective lead shield that is around your child’s bed will depend on how much radiation is measured in the room each day by the radiation specialist. 
  • Family may visit anytime outside of the room behind a lead shield.  Your child will be able to see who is visiting over the shield/through a mirror. 
  • No one will be able to spend the night in the special room with your child during this time.

Patient Responsibilities

During the weeks before and during the MIBG treatment, it is important that patients do not take any medications that interfere with the uptake of MIBG by tumor cells, i.e. over the counter cold medicines.

If you are unsure of any medications, please discuss with the NP/MD at UCSF.

A bladder catheter (called a Foley catheter) will be placed to protect your child’s bladder from excessive radiation.

The Foley catheter MAY stay in the entire admission, for safety reasons.

Your child will begin to take potassium iodine late night prior to or the morning of the MIBG infusion, to help protect the thyroid from radiation damage.

When patients use toilet in room, flush only toilet paper. 

Parent Responsibilities

Once your child has received the MIBG, they will be considered radioactive.

The door to the room will stay open at all times for easy communication with your child. You can see each other from the door way via a mirror placed on the window sill.

Since our nursing staff is exposed to these treatments often, we expect parents/caregivers to help with general care of the patients, i.e. giving oral and/or NG medicines (if a nasogastric tube is placed), toileting, feeding, and changing clothes.

Once your child has received the MIBG, you will have limited time to spend in the room, as little as 15-30 minutes in a 24 hour period, in some cases.  As the days progress and the radiation level gets lower, you will have more time.

Why Parents Have to Provide Care

The MIBG medical team cares for many patients.  If they perform non-medical care for all MIBG patients, over time they will pass the legal limits for radiation exposure, risking their health and making it impossible to care for other children.  They also need to be available for more complex medical care and to help with emergencies, if any.

Therefore, one or more adult caregivers must be available to help provide non-medical care for the entire hospitalization, including overnight.

There should be no pregnant caregivers.

Parent Expectations and Accommodations

One parent/caregiver is REQUIRED stay with the child at ALL times. There is an ante-room (small area outside the child’s room) for you to sleep and stay during the day.

Only one caregiver can stay overnight in the ante-room. Our family house can accommodate others.

We request at least 2 caregivers to assist with care for the child, especially if they are under 5 years old.

Nurses Responsibilities

The nurses will provide support for your child including:

  • Administration of IV medications
  • Regular assessment checks
  • Radioactivity monitoring of your child
  • Parent and other caregiver education and support
  • Continuous video monitoring of your child from the nursing station
  • Emergency care if the need arises

How Does MIBG Affect Caregivers?

There are safe levels of radiation exposure for everyone. Our radiation safety officers will help determine what is safe for all caregivers.

All caregivers will need to walk into the room with the appropriate protective clothing, gown, gloves, shoe covers and radiation counter.

Parents and caregivers will meet with a radiation safety officer to review appropriate safety guidelines.

How much radiation exposure will caretakers receive?

Family caregivers usually receive between 50 - 300 mRem during a treatment. The federal government limits a family caregiver to 500 mRem per year. The limit for medical staff is 5000 mrem per year.

By comparison, the typical person living in the U.S. receives a “natural” background radiation dose of about 300 mRem per year.

Some other sources and amounts of this radiation are shown below.

Cross-country flight:                                                     5 mRem
Chest X-Ray:                                                              10 mRem
Living in Denver:                                                        50 mRem
PET scan:                                                                 630 mRem
MIBG scan:                                                               780 mRem
Chest/Abdomen/Pelvis CT:                                    1200 mRem

Side effects while in hospital

During the infusion there can be blood pressure changes. A doctor will attend the entire infusion to help monitor for this. The patient will have a blood pressure cuff on with vital signs taken every 15 minutes.

After the infusion common side effects are:

  • Discomfort from the Foley catheter
  • Nausea and maybe vomiting
  • Pain in the salivary glands
  • Dry mouth/Decreased appetite

To help with symptom control the patient will be given anti- nausea medicines and pain medicines when needed. We recommend bringing sour candies to help with the salivary pain.

Boredom from having to stay in bed is the number one complaint from kids, but most patients are discharged from the hospital within 5-7 days.

MIBG is completely different from other therapies your child has already experienced:

The main side effect of MIBG after the treatment is low blood counts beginning 2-3 weeks after the infusion. If your child is being treated with MIBG in combination with other medicines the blood counts may fall faster.

Depending on what protocol your child is treated, he/she may also need their stem cells to be re-infused about 2 weeks after the MIBG infusion.

Your child will be closely monitored and may need supportive treatments such as GCSF/Neulasta, platelet and/or red blood cell transfusions.

Criteria for discharge

Federal regulations require patients to remain in the hospital until the radiation level detected at 1 meter’s distance away from the patient (about 3 feet) is below a certain level. Radiation Safety staff will check the radiation level daily.

Once the patient is released from the hospital there are no government restrictions that apply.

Patients will still put out low radiation levels when they leave the hospital, but at levels that are considered relatively safe for others around them.  Most children should plan to stay out of daycare or school for the following week and need to carefully follow discharge guidelines.

The staff will provide thorough instructions and training before you leave.

The radiation safety officers will place a wrist/ankle band on your child prior to leaving the hospital. It will be worn for 30 days. It will let other health care providers and airport security know your child has been treated with radiation. It will also have an emergency contact number for UCSF.

After Discharge                                               

Guidelines for Home Care after Treatment

For 7-14 days after discharge, patients are advised to:

  1. Continue to take potassium iodide (KI) per label on potassium iodide solution vial or orders provided at time of discharge from NP/MD.
  2. Flush toilet twice after urination.  Males should sit to urinate to avoid splashing.
  3. Use disposable diapers and be sure to place in outside garbage can at least once a day.  Use disposable vinyl gloves while changing diapers.
  4. Wash hands carefully with soap and water after changing diapers, handling urine, vomit, or stool.
  5. Bathe daily, and wash hands frequently.
  6. Avoid close contact (closer than arm’s length) for longer than fifteen minutes per day for the first week after treatment. 
  7. Patients may not hold infants for one month after treatment to prevent undue radiation exposure.

Follow up after discharge

Labs will be evaluated twice weekly until ANC>500 and platelets >20,000 for 3 consecutive days

Weekly physical exams for 4-6 weeks

Stem cell infusion 2 weeks after MIBG infusion, if required by the protocol your child is treated on
Restaging with scans, bone marrow biopsies and labs 4-6 weeks later

Remember:

The radiation safety officers will place a wrist/ankle band on your child prior to leaving the hospital. It will be worn for 30 days. It will let other health care providers and airport security know your child has been treated with radiation. It will also have an emergency contact number for UCSF.