#54113 12-03-2003 05:55 AM | Joined: Sep 2003 Posts: 37 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Sep 2003 Posts: 37 | 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. 
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.
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#54114 12-03-2003 06:34 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Dear Debbie,
I can't answer anything about Dan's new diease. I can offer my prayers and support as needed. Seems like you are on the right track with the specilist's. I would go on Google and research that diease. I pray everything turns out in your favor, Thinking about you and Dan.
Your Friend, Dan Bogan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#54115 12-03-2003 07:47 AM | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | What I can tell you is that this disease does not often extend deeply into the tissues and for the most part remains near the surface. My GUESS is that the surgery will be less invasive than you might think. Remember the good part, leukoplakia, even verrucous forms, is a PRE cancerous condition, not cancver....
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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