I do not see that you have posted since 2009, but I thought I would give this a try. I have also been diagnosed with PVL which turned to Squamous Cell Carcinoma. It was all removed in April of this year along with two of my teeth and part of my jaw. It has returned over the last few months. I am having surgery next week. I too, am interested in anyone else with this condition, but since it is so rare there are very few of us around. About 1 in 7.1 billion.