Has anyone out there been diagnosed with Proliverative Verrucous Leukoplakia? Just wanted to find someone else with this rare disease. My husband was diagnosed a few weeks ago after having white patches appear around his tongue graft area. No cure and only treatment is to laser or cut...we are seeing specialists but no one has much to offer except they will come and need to be cut out asap before turning to cancer. The question becomes how much can one have their tongue cut? They don't know the origin of this disease and it makes it very hard as Dan has no control over it...nothing he can do to help. confused

Debbie/Caregiver/wife of Dan, diagosed with SCC tongue, Stage II/III, 1/3 tongue removal, lymph node dissection both sides of neck, skin graph 7/30/03. Left tumor found - radical left neck dissection 12/24/03. Could not get all of tumor/wrapped around carotid artery and in wall of jugular. 1/12/04 beginning of 6 doses of Taxol/Cistoplatin once a week, and rad 70 gray 5 days a week/6 weeks.