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Neuroblastoma Neuroblastoma
by Kimberly Allen, RN Neuroblastoma though the third most common cancer in children is the most common “extracranial solid cancer” diagnosed in children.  Extracranial... Neuroblastoma

by Kimberly Allen, RN

Neuroblastoma though the third most common cancer in children is the most common “extracranial solid cancer” diagnosed in children.  Extracranial means outside the brain.  It is also the most common type of cancer diagnosed in infants.  Approximately 800 children are diagnosed every year in the US with approximately half of those being children under 2 years old.  Although like most other types of cancer it can be diagnosed at any age it is almost always diagnosed in children 5 years of age and under.  neuroblastoma-stage-4

Neuroblastoma usually originates in and/or around the adrenal glands though it can develop in other areas including the chest and neck as well as near the spine.  Depending on where the neuroblastoma tumor is your child could have a variety of symptoms.  The most common are found in the abdomen which generally causes abdominal pain, changes in bowel habits, usually diarrhea, and swelling in their legs.  There may also be a mass under the skin that you can touch with causing the child pain.  If the tumor is in your child’s chest it will usually cause chest pain and wheezing.  There may also be some changes in your child’s eyes like unequal pupil size and drooping eye lids.  Some children develop dark circles that appear like bruises around their eyes as well as eyeballs that look like they are protruding from their sockets.  Other symptoms that a child with neuroblastoma might demonstrate include back and bone pain as well as a fever and unexplained weight loss.

Although there are some forms of neuroblastoma that resolve on their own the majority  of neuroblastoma tumors are progressive with very poor prognosis’s.  Unfortunately many children lost their battle with neuroblastoma, however, research shows great promise for the future.  Research is expensive and in most cases any funding is used for less obscure diseases.  But, when it’s your child that is one of the 800 diagnosed every year the disease doesn’t feel so rare to you.  This has spurned numerous private organizations like Alex’s Lemonade Stand Foundation.   The discovery that neuroblastoma develops because there are extra copies of a particular gene that encodes the MYCN protein has lead  researchers to focus on developing targeted therapy.  In targeted therapy the treatment is aimed at the specific genes and proteins of the particular cancer as well as the tissue that benefits the cancers ability to grow and survive.

One of the newest and most promising treatments is a drug called crizotinib that has been funded by ALSF.  So far researchers have discovered in early studies of crizotinib have stopped, not just slowed down, the growth of at least types of cancer; anaplastic large cell lymphoma (ALCL), inflammatory myofibroblastic tumors (IMT), and neuroblastoma.  In fact in some cases there were no signs of cancer after treatment.  This new drug, crizotinib, specifically targets changes in the ALK gene which is common to all three types of cancer.  There are 70 children in the study, they were all diagnosed with one of the three types of cancer including neuroblastoma.  The results varied depending on the type of cancer the child was diagnosed with.  In the children with ALCL 7 out of 8 showed “no evidence of cancer for as long as 18 months” and in those with IMT most either showed the tumor shrank or disappeared completely for as long as 2 years.  Out of the 70 children in the study 27 were diagnosed with neuroblastoma.  Out of the 27 the tumor disappeared completely in 3 and stopped growing in 8.

These findings are very significant for children with neuroblastoma as in the past when treated with all the standard therapies the condition usually worsened in a month or so.  What makes this new treatment even more remarkable is that it’s an oral medication with virtually no side effects.  This study is being conducted at the Children’s Hospital of Philadelphia.  Dr. Yael Mosse Assistant Professor of Pediatrics stated “Now that we know more about factors that drive cancer growth in children we can target those changes and give treatments in a much smarter, and potentially safer way”.

This is not the only study or clinical trial involving treatment for neuroblastoma there are several others.  If your child or someone you know has been diagnosed with neuroblastoma ask your doctor for a location near you.  Also, they are listed online with information pertaining to each clinical trial.  Your doctor can help you when considering the treatment plan that best fits your child’s needs.

Kimberly Allen is a registered nurse with an AND in nursing. She has worked in ACF, LCF and psychiatric facilities, although she spent most of her career as a home health expert. She is now a regular contributor to, dispensing advice and knowledge about medical issues and questions. You can reach her with any comments or questions at