Brian,
Thanks for your quick response. We were able to pull some information from the seaching here on OCF and a friend found some more. Dan's oral surgeon was honest to say that he had not really heard of this and had to look it up before calling Dan. We have a consult with him this Friday. I was hoping they would go ahead this Friday and remove the spots, but I guess the oral surgeon wants to take a look first. At the biopsy three weeks ago, Dan really thought this was dead skin from the graft, however, the oral surgeon must have saw something because along with the spot Dan felt way back on his tongue, the oral surgeon sent the spots around the graft away, too. That is what came back as PVL and now we can see them on Dan's tongue as white patches so they have definitely grown. The OC also gave Dan a number to call at dr. at John Hopkins who is setting up a study in the spring to try and look at genes or whatever to try and determine what is causing this...there are only three others at this time. I think I fear how much tongue they will have to take to keep cutting these out. As he has three since his original surgery three months ago, they seem to be coming fast. Do you know if they also come up other places in the mouth, or just the tongue area?

Anyway, hopefully, after Friday's consult, they will get him in and remove them quickly. We are quite fearful about amount of tongue and future speech as Dan is a salesman and a church drama director. I did read something about cryosurgery...do you know if that is done and if it is successful? Also, as much as we wanted to avoid radiation, would that be at all helpful in this case? Of course, we will be asking all these questions on Friday to the OC.

Thanks again, Brian, and any other info you have would be greatly appreciated.
Debbie