Desmoid tumorsdo not generally metastsize but can cause pain by locally invading nearby structures and damage nearby organs. Several new drugs are being research, among them Nexavar (sorafenib). Establihsing a dose in children has been difficulat. A recent study of sorafenib in children with neurofabromatosis was not able to establish the minmally tolerated dose. A series from Sloan Kettering used sorafenib as first and later line therapy. Sixteen of 22 (∼70%) patients reported significant improvement of symptoms. At a median of 6 months (2-29) of treatment, the 6/24 (25%) patients had partial response (PR), 17/24 (70%) with stable disease, and 1 with progression and death. NCCN lists sorafenib on p. SARC-E.
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