Bonnie,

Quite an impressive post, certaintly one of the longest I have read.

I'll start by suggesting you update your signature to include your Dx and Tx, etc so posters don't have to wonder.

You covered many many topics and asked many questions so I'll do my part in posting.

Re HPV, did you get tested? I assume you would test positive and I'm surprised that the findings of Johns Hopkins weren't considered in your trial.

Re HPV, Dr Maura Gillison of JH and Dr Anna Giuliano (Ph.D) of Moffitt are 2 standouts in the HPV field. I'm sure that there are others.

Re Advanced Staging, many of us never noticed anything until we had nodal involvement and even then there was no associated pain. I have found this to be particularly true with HPV+ patients.

Re questionares, surveys, since I found this site none has been attempted and in fact they have been discouraged, rightly so, since we are untrained in that field.

Re activism, Other than Brian, there are a few, myself included, that try to spread the Oral Cancer message. My soapbox is HPV and I have been the subject of newspaper articles; have been on TV and radio programs; testified before the Florida House and I will talk to anyone, anywhere.

Re Taste issues, I have found that each of us can have different degrees of taste and recovery issues since all of us are different to begin with; ther are at least 2 distinct causes of SCC and our Txs vary considerably. That combination leads to difficulty in fitting us all into one recovery mold. Therefore I can only answer about me...I first noticed a taste improvement during my 4th month post Tx and another slight improvement at the end of my 5th month. Since then improvements have been slow but steady and nearing my 11th month post Tx, I feel that my taste is about 90% or better of normal. My wife is a restaurant owner and World award Cookbook author so I share your disappointment since I can no longer (yet) appreciate the subtleties of her cooking.

Re weightloss/gain, I was and still am an exercise nut. Before Tx I rode my bike 100 miles a week and was a former high impact aerobics instructor. I always maintained my weight and was within 5 pounds of my college weight but I never did have a problem if I wanted (or not) to gain weight until Tx began. I did not have a Peg and I lost 30% of my total body weight. Three to four weeks post Tx I started consuming 3000+ calories a week eating every possible bad food I could find. It wasn't until my 8th month post Tx that I started to gain weight and that's when I switched my eating habits back to pre Tx mentality. Starting in my 9th month, I began to ride my bike again and am now back to 70 - 80 miles a week and I actually feel better, not stronger, than I used to.

Re this valuable site, you're 100% correct.

Hope this helps.