UK Protocol for Stage IV Neuroblastoma- is it the right treatment for my daughter?
 

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04-10-09 12:20 PM
karine
UK Protocol for Stage IV Neuroblastoma- is it the right treatment for my daughter?
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Hi everyone

I have read some great posts on this website and wondered if anyone would be able to answer some questions that I have concerning my daughter.  My daughter has been diagnosed with Stage IV MYCN non amplified end of February 2009, she has 1p deletion and 17q gain but 11q normal.  We are still awaiting her DNA ploidy.  She has a large tumour arising from the adrenal gland with bone marrow mets.  She was only 15 months at diagnosis.  We have been put on the high risk protocol here in England as that's what she is classed as in Europe, differing from the USA and I am concerned as to whether my daughter is being overtreated to early.  She is currently on a clinical trial which she has started.  The clinical trial consists of 70 days of chemotherapy every 10 days with GCSF injection in between.  Once this chemotherapy is over she will undergo staging with regards to surgery.  Once surgery is finished she will have high dose chemotherapy with stem cell rescue.  Following this she will receive radiotherapy to the primary site over every day for 2 weeks.  She will then have differentiation therapy (retinoic acid) as an oral treatment over a period of 6 months, treatment given for 2 weeks followed by 2 week rest.  She may or may not receive immunotherapy depending on what she is randomised at.  She has completed 5 rounds of chemotherapy so far and is has just had a bone marrow test which is clear now, and an ultrasound scan which reports the tumour is now not visable on ultrasound - which obviously is great.  I am just worried that my daughter is being overtreated here and if, god forbid, she ever did relapse her chances of treatment are slim.  Many thanks in advance.

 Mum to Sophie Atay, aged 16 months, Stage IV neuroblastoma.

04-10-09 01:07 PM
Donna Ludwinski
Re: UK Protocol for Stage IV Neuroblastoma- is it the right treatment for my daughter?
Reply

Dear Karine,

I am sorry about your daughter's diagnosis and the trauma this disease brings. Sounds like she is on

the European SIOP Neuroblastoma Group (ESIOP NB) phase III high-risk NB protocol opened in 2002 (SIOP-EUROPE-HR-NBL-1)

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=69191&version=HealthProfessional&protocolsearchid=4015135

http://www.nbhope.org/blogs/parents_handbook/archive/2008/07/02/51870.aspx

 Very best wishes for her healing,