Stefon, I have my bone graft surgery scheduled for June 10, 2002. My doc is going to take the bone from the same side of my mouth as where we want to put it. If he can't get what he needs there he will go to the other side. The bone he is taking is from where the wisdom teeth were. I am hoping that I only have to have one side worked on. Please keep me posted, my thoughts are with you and glad things are going okay.

Take care.

Anne

My name is Dianne and I am a 12 year survivor of stage II OC (floor of the mouth) and an 11 year survivor of stage II OC (side of the tongue) and a 10 year survivor of stage IV OC (lymph nodes, radical left neck)! That ol' beast just kept coming back..but after the radical neck, I underwent radiation treatments and that was the last of the beast. I've managed to work full time during all of these surgeries and radiation and still keep up with my husband, six children and 8 grandchildren. Don't misunderstand me, the road has been VERY hard at times, but I always felt that if I quite working and changed my life style....then the beast won after all, so I just kept on going. The biggest problem I have had has been with the progressive radiation changes on the interior of my mouth. We just can't turn that darn radiation off, and the damage does get a bit worse with time. I take several medications that help and keep me going, but I often wonder what changes the radiation will continue to make in the years ahead. If anyone knows more about progressive radiation diaease, please let me know what to expect.
Nice to meet you all...see ya, Dianne

Hi Dianne..........Wow! Sounds like you've been through a lot! I, too, was diagnosed with SSC of the tongue and floor of the mouth. In April of 1997 I had both a hemmiglossectomy and radical neck done; I was given six weeks to heal from the very invasive surgery and then began my real battle: radiation and chemotherapy. I was given thirty eight days of radiation along with three rounds of chemo sprinkled in there for good cause. It was a difficult treatment regime, but I guess I don't have to tell you that. LOL

Five years later I still suffer from RAD with most of my difficulty being an extremely dry mouth. I am never without a bottle of water at my side and although I take the prescribed salagen, it doesn't seem to work well for me. My teeth are healthy (knock wood) but the bones in my jaw seems to be slowly going down hill. A few months back I woke to find a piece of bone literally coming out of my gum line. I have all the usual eating/swallowing problems but the majority of my problems seem to stem from dry mouth, which is a constant. I seem to have more difficulty in the winter months when the weather is dry, but also have trouble with my oral cavity if I do too much physical activity. Even walking my dog can cause my tongue to swell making my speech a real mess, and my mouth very sore. The dryness also causes sores on the inside of my cheeks/lips and then there is the constant burning sensation that I have 24/7. Still, like you, I plugg along; I have adjusted to make the best of a rather poor situation.

Really, the only thing that gives me comfort is keeping my oral cavity as moist and clean as I can, day in and day out. I have tried Oral gel, and salagen and even Biotene gum for dry mouth but nothing seems to work better than good old fashion water which, like I said, is always at my side.

Would love to chat with your reguarding cancer/dry mouth. You can either e-mail me personally or ask specfic questions on this forum. Either way works for me. I'm glad to hear that you've been able to keep the cancer at bay with either surgery or radiation. That gives me hope. Look forward to hearing from you again. Sincerely, Donna

This Friday (July 12) I am having the titanium implants placed in my newly grafted (March 20) bone. The graft site in my mouth has never really totally closed and still has exposed bone, but does not cause me any pain. When they open up the tissue they will be able to determine if they can put 2 or 3 posts in. I lost three teeth in my original cancer surgery, but since some of the bone graft did not take, I may end up with 2 implants rather than 3. I'm looking forward to getting the exposed bone covered with tissue again. I'll update next week on how it went!

Dave, Good luck. I like you had only partial success with the bone graft. I went back to day and we are determined that I will be getting 3 implants come hell or high water. I lost four teeth and just getting back three will be a pleasure. I'll be thinking of you. And again the best of luck.

Anne.

It's been a long time since I've posted, I follow all of the stories on this board closely and don't weigh in often but appreciate the input that all the regular contributors post. My case seems minor league compared to what many of you have endured, but emotionally we've all been changed forever. Two weeks ago I had my dental implants placed, Just over 2 years following my original cancer surgery. I ate thanksgiving dinner with a (nearly) full complement of teeth, I ended up -1 tooth after all was said and done. I was sorry to see Larry Sharp's recent news of round 2, I think Larry and I discovered Brian's labor of love about the same time and we're both listed on the dental lifesavers portion of the website. Hopefully it's a 2 round fight with Larry emerging as the champion. Best of Luck to all are actively fighting, for now I'm out of the battle, changed forever. This home that Brian has built has been nothing short of a miracle, the support that you all provide to one another is beautiful to watch. I, for one have an IOU out to Brian to support this site with my story and my resources ($$$). I hope we all can help out as much as possible. Again, thanks to all of you for sharing your stories as they unfold and a special thanks to Mr. Hill for his Labor of Love.

Stefon,
I came along about 300 members later than you and really enjoyed reading your postings from earlier in the year. I am glad that things are going so well for you. This really is an amazing place. The docs and techs at MD Anderson did a great job bombarding my body and the cancer with radiation up until Labor Day, and although they all mentioned that I would probably be back to feeling like myself around Christmas or first of the year, I had no idea how rough it would be or how bad I would feel once the radiation had ended and I was sitting around the house waiting to heal. I felt bad and got depressed and then discovered this wonderful website, which was such a source of information and inspiration. Kudos to Brian and to people like you, and everyone who writes in with valuable and caring information or even questions.

Danny G.

Stefon: Thank you for the kind words, they are indeed what nourishes me through the difficult times with the foundation. Just when I get a turn down from a corporate sponsor, a bashing from someone who thinks me too driven or outspoken, or lose another valued friend to this disease, I get buoyed by a positive comment and outcome like yours. I know it seems like it has taken a long time for you to come back from your journey with cancer, but to be cancer free and healthy now, and with teeth no less!!! I

Stefon, You lucky dog you, teeth for Thanksgiving. I agree with Brian we could use some more information on the implants. As for me, I have a screw coming loose where they put in my transplant. (I have always been told I had one or two loose.) The thing is trying to force it's way out my gum. The doctor said he would jave taken it out last week, but he left his screw driver in the hospital. I told him I felt like I was a car on the lift and he was a forgetful auto mechanic. Glad things are going well. Anne.