HUM-MOLGEN DIAGnostics/Clinical Research


1 July 1998
Neurofibromatosis (Type 2)


Apparent patient location: New Jersey, USA

I am looking for any clinical trials for therapies, either as cures or "bridge therapies" for NF2 or benign tumors.  My son has: bilateral vestibular schwannomas--one removed and now deaf in that ear optic sheath meningioma-removed, blind in that eye, tumor regrowing ependymoma in medulla pineal cyst causing mass effect left frontal lobe tumor cervical spine tumors-4
to date haven't scanned other portions of spine yet  We tried hydroxyurea, based upon Rudolf Fahlsbach research, but his counts dropped terribly and he was already almost blind in that eye  Interferon--on too short time, before we tried hydroxyurea  concerned about peripheral neuropathy with thalidimide  what else is out there--not even specific to NF2?

Thank you
 


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