MIBG Treatment

Levine Children’s Hospital will now be 1 of 20 hospitals (and the first in the region) to have a MIBG Treatment room in the U.S. The two-room MIBG suite, which will include a lead-lined patient room and an anteroom for parents and caregivers, will provide targeted radiation to pediatric neuroblastoma patients and other rare pediatric cancers with minimal side effects. In addition, availability of this room will allow for research studies aimed at testing the effectiveness of early MIBG treatment regimens. Isabella and her parents were forced to travel to Childrens Hospital of Philadelphia due to this treatment not being available in Charlotte. We are excited that we are changing this challenge for other families.

Construction is anticipated to be completed in December 2018 with the first patient availability in January 2019.

Currently, under construction, the two-room Isabella Santos Foundation MIBG suite, which will include a lead-lined patient room and an anteroom for parents and caregivers, will provide targeted radiation to pediatric neuroblastoma patients. In addition, the availability of this room will allow for research studies aimed at testing the effectiveness of early MIBG treatment regimens.

WHAT IS MIBG?  MIBG, called Meta-iodobenzylguanidine, is a compound that can be combined with radioactive iodine to deliver targeted radiation therapy.  MIBG can be used to treat high-risk neuroblastoma, a tumor that beings in nerve tissue in infants and young children.  MIBG is administered to a child through an intravenous line and absorbed by tumor cells, which are killed by radiation emitted by the radioactive MIBG.  This therapy destroys tumors while sparing normal, healthy tissue.  MIBG therapy is generally more effective, less painful, requires less time in the hospital than other treatment options, and is administered with little to no side effects.

As the MIBG suite progresses at Levine Children’s Hospital, we want to ensure we continue to help prepare for the kids and families who will be entering this treatment program.  New in 2018 we have developed a fundraising program focused on MIBG Therapy, the MIBG Ambassador. Our goal for 2018 is to have 20 members collectively raising $100,000. You do not have to live in Charlotte to participate as this program will affect kids and families beyond our region.  Become an MIBG Ambassador to help us get ready!

131 I-MIBG Therapy

Top 3 Myths….BUSTED!

MIBG Therapy is NOT just A Diagnostic Scan

Myth 1: MIBG Therapy is a diagnostic scan…NOT a type of therapy.

MIBG stands for I-Metaiodobenzylguanidine. It is a radioactive iodine that is chemically attached to the MIBG molecule. 123 I-MIBG is the radioactive iodine that is given IV prior to the nuclear scan. It is given at smaller doses and is taken up by neuroblastoma cells, therefore allowing for imaging and staging. It is not a type of therapy. 131 I-MIBG is also a radioactive iodine, however it is a different type from 123 I-MIBG. It is given in much larger doses (usually 12-15mCi/kg). The neuroblastoma cells take up the 131 I-MIBG iodine and the radiation attacks the NBL cells, killing them. The radioactive material then exits the body via bodily fluids (urine, blood, sweat, salvia).

MIBG is A LOT of Radiation and Exposure is VERY Dangerous.

Myth 2: MIBG is A LOT of radiation and exposure is VERY dangerous.

MIBG therapy is a lot of radiation but with the safety mechanisms that are placed your exposure is minimal and very safe. These safety measures include lead in the walls, lead shields around the patient’s bed, gowning and double gloving before entering the patient room, wearing a dosimeter to measure your exposure and limiting time spent in the patient room. Did you know that a typical person in the US receives about 360 mRem of natural/environmental radiation per year? For example, on any given cross-country flight you receive 5 mRem. With 131 I-MIBG therapy parents and caregivers receive on average of 50-300 mRem per treatment. In one study the mean parent dose was 180 mRem and the mean nursing dose was 44 mRem. With safety regulations (federal regulations for caregivers and nurses is 5000 mRem/year) and other safety measures in place, radiation exposure is minimized and safe.

Concerns to childbearing caregivers: Radiation exposure of this nature will NOT affect fertility. Pregnant caregivers are not allowed to care for these patients due to the risk to the fetus’s thyroid development. Breastfeeding is safe with no internal exposure.

MIBG is only for patients at the end of life, there are no other options.

Myth 3: MIBG is only for patients at the end of life, there are no other options.

131 I-MIBG is most commonly used as compassionate use, for extending a patient’s quality of life once relapse or progression has occurred with standard therapy. It is a relatively pain-free therapy. Its major side effect is bone marrow suppression, for which the patient will receive a stem cell infusion 2 weeks post-therapy. However, a recent COG pilot study researched safe and effective ways to put MIBG therapy in upfront Neuroblastoma treatment. The findings of this study were promising and a new COG protocol opened in May. Other studies are also ongoing with MIBG in upfront therapy. This is all very exciting in the treatment of Neuroblastoma.

The Isabella Santos Foundation MIBG Therapy Suite at Levine Children’s

What is MIBG Therapy?

MIBG stands for I-Metaiodobenzylguanidine. It involves giving the patient a radioactive medicine (iodine) through an IV. The radioactive medicine travels to the cancer cells in the body and destroys them. The radioactive medicine then exits the body via bodily fluids (salvia, blood, sweat, urine).

Who is the therapy for?

This therapy is for children with a type of cancer called Neuroblastoma. Neuroblastoma is a tumor most often found in childhood. This therapy is most commonly given to patients with cancer that has returned or when other treatment has not helped the cancer stay away. Recently it has been used in upfront therapy and is very promising.

How is the therapy given?

Once the medicine is given to the patient, that patient and their bodily fluids are highly radioactive. Therefore, they are required to stay in a lead lined room until their levels of radiation are low enough to discharge. Our room here at LCH will have a patient room with a parent room attached. The patient room will have special equipment to make sure the patient is safe and able to enjoy lots of activities. The parent room will also have a viewing window so they are able to see the patient at all times. The rooms are both equipped with special cameras to help the parents and staff monitor the patient at all times.

Why do we need a Suite here?

Currently the closest facility that offers this therapy is more than 2 hours away. Bringing a therapy like this to Charlotte ensures our patients and families can get the most up to date treatment right here at home. Our program will include a Physician, Nurse Practitioner, Child Life specialists, Psychologist, Pharmacist, Nuclear Medicine and Radiation Safety specialist. In addition, our amazing nurses will have specialty training to care for our MIBG patients.

When will the program open?

We are hoping to start seeing patient by the end of 2018.

MIBG Therapy Room Updates

MIBG Construction Update #5, Levine Children’s Hospital

25,000 lbs of lead bricks… that’s a whole lot of lead. But that is the necessary requirements to protect and manage MIBG Therapy safely for patients, family and staff…


ISF Blog – Aug 23rd

MIBG Construction Update #4, Levine Children’s Hospital

Look at all the lead work that has been done since our site visit on the new ISF MIBG therapy suite at Levine Children’s Hospital…

ISF Blog – July 24th

MIBG Construction Update #3, Levine Children’s Hospital

Holy cow what a cool morning. Earlier today our team visited the ISF MIBG construction site at Levine Children’s. To set foot into the pediatric cancer therapy site that your dollars support is surreal!

ISF Blog – July 11th

MIBG Construction Update #2, Levine Children’s Hospital

This is really happening… look at the ISF MIBG sign that labels the suite!  Steel beams will be going up next and the lead brick walls will be installed in about 4-6 weeks.

ISF Blog – June 6th

MIBG Construction Begins at Levine Children’s Hospital

Dawn (MIBG Therapy Program Director) and Lindsay (MIBG Head RN) stopped by the Levine Children’s Hospital ISF MIBG construction site to view the first steps of construction.

ISF Blog – May 16th

Million-dollar donation will help families battle children’s cancer

Erin Santos cherishes the seven years she had with her little girl Isabella before she lost her battle with neuroblastoma cancer in 2012. Friday would have been Isabella’s 13th birthday.

WSOCTV – Mar. 9th

We Did It:  MIBG Treatment Room Coming to Charlotte

Friday marked a huge milestone for our Foundation.  And we aren’t just talking about a monetary milestone and funding a million dollar project, but also an emotional one.

ISF Blog – Mar. 12th