On this page there is halfway down a link to the best NCI medical dictionary that will help you sort through terminology. http://www.oralcancerfoundation.org/resources/index.htm

For all the abbreviations that everyone uses here, would someone please post the link to the thread where we discussed this and made a list? Once it's up again I'll send it to Chester and get it up on the permanent archived threads links.

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.

Brian - is this the of abbreviations you wanted?

http://web.utk.edu/~aalix/abbreviations.html

Brian, there's also this one: http://www.oralcancerfoundation.org/cgi-bin/ultimatebb.cgi?/ubb/get_topic/f/6/t/000358.html#000000

-- Leslie

Bonnie,

Welcome, I'm sure others will come along and answer most of your questions. I wanted to pass on what that happened with me.

I'm now 9mos post TX and most of my taste is back. I recently began eating salsa and Mexican food again with out too much pain. My taste isn't as it was but I'd say it's about 80 to 90% back.

Biotene products work well for my dry mouth and provide you with enzyme replacement to help with dental hygiene. The mouthwash doesn't burn at all. The gel is thick but it lasts a good while. It does take some getting used to though.

I weighed myself today and its official I now weigh more than when I started TX. My wife has been on a mission to help me gain my weight back and she has succeeded.

My energy level isn't the same. I don't think it's going to get much better. I think what holds me back is my mental state. I don't know if I'll ever shake these cancer blues.

Sometimes I feel mentally slower than I used to be and I forget things. I've heard it referred to as chemo brain. Kind of like PTSD, I think. Who knows?

Again Welcome
Tim

Hi Margaret,

I know that Amy M. already briefly answered your question about the MD Anderson trial you have read about here, but since I am sitting here at MDA waiting (and waiting and waiting) and am in Month 3 of the trial, thought I'd give more details.

The trial is commmonly known as the "EPOC" trial. It is looking at whether erlotinib, AKA Tarceva, can prevent oral cancer in people at high risk of getting this or a recurrence. It is a fairly unique trial in that to be eligible, your tumor or suspect tissue is examed at the chromosome level to see if you have specific markers that indicate a "loss of heterozygosity" indicating that you are at high risk of recurrence. (around 65%) The link to the trail detail is here
http://clinicaltrials.gov/ct/show/NCT00402779;
jsessionid=2D530CC77B917071F1004E0C4A8BF51A?order=1 (Cut and paste this link into your browser)

I am also an RN so was very interested to read your post about your experiences,although I feel very fortunate that I did not have to have either chemo or rad so can't really answer your specific questions but know others have.

As far what we can do individually, I know that I make a point to educate people wherever I go about oral cancer, if they are willing to listen. Just last week I was in my dentist's office and spoke to not only my dentist at length but also both of the dental techs. While people like Brian Hill are working very hard on National Awareness and Advocacy issues, I guess I'm just trying to at least do this from my little corner of the world, which I think many others are also doing.

Best of luck to you, Margaret, and glad that you are posting now.

Leslie - that was the one. I have mailed it to Chester so that it will stay on the archived threads permanent list. Thank you.

Re: your cervical issue. My husband is a year and a half out of his last radiation treatment and just this week he had a steroid injection for severe neck pain due to a bulging disc and bone deterioration to the spine, most likely from the radiation. The injection gave him immediate relief from pain and they will start up his physical therapy again. He was getting swallow therapy and stretching for a few months at the beginning, but that was cancelled since the doc thought it wasn't doing much good. They should have never stopped the PT. He still can't swallow and will have the PEG forever, but the neck stretching and massage would have helped him.