MIBG Therapy In Charlotte

Toward the end of her fight against cancer, 7-year-old Isabella received a special therapy called MIBG that added 10 more months to her life, including another Christmas and another birthday spent with her family.

Back in 2011, Isabella had to leave her hometown of Charlotte for her MIBG treatment, which can only be delivered in a lead-lined hospital room that keeps the therapy’s radioactivity in check. But today, children from Charlotte with rare types of cancer can stay close to home to get this cutting-edge treatment.  The Isabella Santos Foundation MIBG Therapy Suite at Levine Children’s Hospital opened in December 2018, making it one of the only MIBG treatment rooms in the region.

Every time I visit the suite, I can feel Isabella’s presence. – Erin Santos

To a cancer family, time can be the biggest gift of all.  MIBG therapy gave Isabella 10 more months. 10 more months of memories with her family.   Although MIBG gave Isabella more time, research is studying MIBG in upfront cancer therapy and not just extending a child’s quality of life.  Levine Children’s Hospital now has one of the country’s few MIBG Therapy Suites that will not only treat children with neuroblastoma but also be used in advanced clinical trials to test new products on different types of cancer.

WHAT IS MIBG THERAPY & WHO’S IT FOR?

Using a compound called metaiodobenzylguanidine, MIBG treatment is a highly targeted radiation therapy. Given through an infusion, it can work to effectively kill cancer cells in patients battling neuroendocrine cancers.

Patients who qualify for MIBG therapy are:

  • Between 1 year and 26 years in age
  • Diagnosed with cancer affecting the endocrine system, including neuroblastoma, paraganglioma and pheochromocytoma

What‘s Unique About Levine Children’s ISF MIBG Therapy Suite?

The Isabella Santos Foundation MIBG Therapy Suite is at Levine Children’s Hospital. Offering groundbreaking clinical trials and advanced treatments, LCH is named one of the nation’s top children’s hospitals for pediatric cancer care by U.S. News & World Report.

At Levine Hospital’s ISF MIBG therapy suite, each child’s treatment is tailored to them. From providing care packages with all your child’s favorite things to letting them pick their bedsheets, helping your child feel as at home as possible.  Thank you to our 2018 MIBG Ambassadors for providing funding for MIBG care packages.

In addition to top-ranked and tailored care, we know it’s important to be close to your child when they receive any treatment. One of the things that makes our MIBG suite unique is that it has two rooms – a treatment room for your child and an adjoining room for you. This way, you’ll always be nearby to make sure your child feels safe and comfortable throughout their stay.

And if you need help with travel costs, just let LCH know and they will see if you qualify.

A Cancer Mom’s Personal Journey of the Last 10 Months of her Daughter’s Life…

In 2011 Isabella’s cancer returned.  Cancer on her brain. Her bones. Bone marrow. Neuroblastoma showing on her chest and abdomen. Below are her mom’s personal journal entries detailing the moment Erin Santos learned that Isabella’s cancer was back.  These journal entries spanning across close to 10 months describing Isabella’s parents’ emotional decision to start MIBG therapy at Children’s Hospital in Philadelphia, the memories and much needed time received, the pain and heartache, and the last moments of Isabella’s life.

The journal entries below are raw and real, a cancer mom’s personal journey of the last 10 months of her daughter’s life.  Written by Erin Santos.   Journal entries are from Sept 20, 2011- July 5, 2012.

MIBG Therapy: What to Expect

Find answers to some of the most common questions about MIBG therapy.

How long will my child stay at the hospital?

Your child will be admitted about 24 hours before their MIBG infusion. After the infusion is given, your child will stay until their radiation levels are low enough, and it’s safe for them to leave the hospital.

Typically, patients stay in the hospital for 4 to 7 days total, but this can vary based on dose and age.

How will treatment affect my child?

The good news is MIBG therapy typically has little to no side effects. Occasionally, patients experience nausea or high blood pressure, but these are easily treated and won’t be long-lasting.

The most common side effect of MIBG therapy is low blood counts, which is also treatable and can occur within 2 to 3 weeks of the therapy. The second most common side effect is boredom, which is why we offer lots of activities, video games, movies and other distractions to make their time here a little bit easier.

How do you monitor radiation levels and minimize exposure?

Safety is our top priority, and we track radiation exposure daily. Each MIBG patient receives IV fluids that help get rid of the radiation, and our MIBG room is lined with lead to protect caregivers, staff and other patients from exposure.

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.

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.

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