MIBG Therapy

Here is a brief description of what Ronan will be going through. Or what we are praying for his next treatment to be. Dr. Yale Mosse at Chop will be the one handling Ronan’s care.

Neuroblastoma is a cancerous tumor that begins in nerve tissue of infants and very young children. It usually occurs in the abdomen but can occur in other sites near the spine and spread quickly to other areas of the body. It affects roughly 600 children a year in the United States and can have a varied clinical presentation – some cases are localized and easy to treat, while more than half of the children have aggressive disease that has spread at diagnosis and is much harder to cure.Conventional treatments for neuroblastoma include surgery, local radiation and high-dose chemotherapy. “We are always looking for novel ideas and strategies to try to cure relapsed patients whose neuroblastoma is resistant to traditional treatments,” said Suzanne Shusterman, MD, attending physician at Children’s Hospital Boston andDana-Farber Cancer Institute who oversees the neuroblastoma program. “I-131 MIBG is one of the most effective therapies for children with relapsed neuroblastoma, with a response rate of almost forty percent. While it doesn’t cure, I-131 MIBG can allow patients to gain control of their disease and, in combination with other treatments, bring them closer to being cured.”

Originally developed as a blood pressure medicine, MIBG is a compound that is selectively absorbed by certain types of nervous tissue, including neuroblastoma cells. For many years it has been used diagnostically to determine where cancerous activity is occurring within the body. More recently, oncologists began using it to deliver targeted radiation to neuroblastoma cells by binding it to a radioactive isotope of iodine (I-131). Once bound together, the radioactive MIBG is administered to a child through an intravenous line (IV) and absorbed by tumor cells, which are killed by the radiation emitted by the radioactive I-131. Children’s is the only center in New England, and just one of a handful in the United States, offering this advanced treatment.

“This treatment is a way of targeting radiation to kill tumors while sparing normal tissues,” said Lisa Diller, MD, clinical director of Pediatric Oncology at Dana-Farber Cancer Institute and Children’s Hospital Boston. “We are very excited that I-131 MIBG will be an important therapy in eradicating neuroblastoma.”

The actual infusion of I-131 MIBG is a short procedure, lasting approximately one to two hours. Because this treatment involves delivering high doses of radiation, a patient will stay in a specially designed room in the hospital for three to seven days after the infusion.

The I-131 MIBG room is a 256 square-foot hospital room located in the stem cell transplant unit on the sixth floor of Children’s Hospital. The room has added protective features to help manage the therapy safely for the benefit of both patients and staff, and has an anteroom where parents may stay to help with the care of their child and be in close proximity throughout the therapy. During the day parents may safely spend time with their child following specific safety procedures designed to protect them as well as the hospital staff.When a child is hospitalized for I-131 MIBG therapy, parents and caregivers will be considered an active member of their child’s care team and will be closely involved in delivering routine care. The carefully selected and trained team of healthcare specialists will clearly explain these safety procedures and responsibilities to parents before scheduling treatment.Compared to chemotherapy, I-131 MIBG is very well tolerated and affords a good quality of life for patients traditionally overwhelmed with hospital visits. The most common side effects are low platelets and low white blood cell counts about a month after receiving the treatment, both of which can be easily managed. Follow up visits to the hospital are also limited, most often taking place six to eight weeks after the date of infusion.

Almost all patients report at least a subjective response to I-131 MIBG. “The nice thing with I-131 MIBG is that most patients, even patients who don’t have a response that we can see by standard imaging techniques, have a decrease in their level of pain and improvement in their quality of life,” continued Shusterman.

8 responses to “MIBG Therapy”

  1. Thank you so much for sharing this, knowledge does empower you. I had actually looked it up and watched a few short videos on it after blog last night.
    We are so thankful that this treatment is short, and will bring you back to Phoenix and family very quickly. Thank you for keeping us posted and informed.
    Our thoughts and prayers are with you and your family on Easter and you upcoming journey to CHOP. All our love.

  2. Go Ronan. You will do GREAT. My prayers are with you and yours.

  3. Thank you for this explanation. I found it yesterday when I googled MBIG to see what your next step was going to be. You are going to CHOP though not Boston as stated in the article right?

    My continued thoughts and prayers for all of you. I said a rosary today at mass for your strength and peace as you all continue to fight. Ronan’s pictures are adorable and I am sooooo glad you have been able to spend some time with the twins and in your home together! love always, Sister Mary

  4. Come on CHOP !!! you have to be the place for miracles! You can’t let Ro down! He’s a brave, beautiful lil man and he’s been fighting! CHOP you have to fight for him!!!

    Stay strong Ro and Maya… My prayers and positive thoughts are with you both and your family.


  5. Truly a blessing of encoruagement..thank You God! Continued prayer in many forms!
    Continued hope! Praying this situation will have the Lord directly in the middle of the situation..helping you all get through it, in Jesus name!

  6. My heart just broke reading your post about sweet Ronan. I was so pissed at the way you were treated by the doctor….I mean I totally get that he was in a tough spot and probably felt in some way he had failed you….but having said that I don’t get why he didn’t show more compassion and more FIGHT in terms of searching out other options that could help this sweet boy!!! I am praying and praying so hard that MIBG WORKS a miracle for him. So sorry for the heart breaking news and I know there are no words that could help you in any way but atleast you know that so many people follow your son’s journey and support him and pray for him and all of your beautiful family. Cancer just sucks so much and I was absolutely horrified by the way that doctor visit went.

  7. Following from the beginning, I have read every post and heard the good, the bad, and the ugly of what your family has been through. I have not posted before, but hope that your beautiful, strong, determined, lovely family feel the love, the prayers, and the thoughts of encouragement that are coming from so many people you don’t even know. Now is when the fight really begins, and you will conquer the hardest battle of your lives. Rock on little Rock Star! Tonight I am praying harder then ever for peace and strength and for that damn cancer to just give it up all ready!

  8. I am a friend of Rachel Cox (Olivia’s Mom) and I have been following your blog for several month’s. My heart breaks for you and your family. Never give up, Ronan will come through this. With so many people holding him up in prayer the power of these prayers will give hime the strength to beat this awful disease.

    Stay strong, you are an amazing courageous woman with a Mother’s love beyond compare.

    God bless,

    Jill Hill

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