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hope4nb Posted: 31 Jul 2009 9:20 AM

My daughter's oncologist told me that we would receive six months of Accutane. We've heard from other neuroblastoma parents that their children are receiving more. Does anyone know about this? Thoughts? What is the appropriate length of treatment?

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JasonsMom replied on 1 Aug 2009 6:18 AM

The standard length of treatment with Accutane for children with high risk neuroblastoma is six months.  However, I have heard of several children that have used it for as long as a year or more.  At a conference two years ago one of the researchers that studies Accutane in neuroblastoma said the 6 month term was an arbitrary number.  They chose it because they thought it would do the trick and because they knew they could get it into the protocol - not because 6 was the magic number.  Unfortunately, they haven't done a study to see if it provides any benefit or any more toxicity to do it  longer. There are arguments however.  Send me a private message if you would like more info.

BTW, the current German tiral uses Accutane differently than any other protocol. After transplant, the high-risk protocol includes six months of cis-retinoic acid (Accutane), a three month break, and then another three months of Accutane.

http://www.kinderkrebsinfo.de/e1664/e1676/e1758/e7720/index_ger.html

Becky

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