I too have a team. This morning I saw my surgeon (otolaryngologist) the radiatin specialist, the speech pathologist and nutritionist. I also had home nursing care every day to change the dressings on my trach and graft site -- they also send a dietican every 2 weeks.

Ed, do you have any swelling on your face? The left side of mine is noticeably swollen and red, (neck dissection side) and the right side is always a little red. Kris, do you have any swelling on your face? Thanks, Carol

Carol-
Yes to both. And if I touched the area it was extremely sensitive, lots of tingles! But as they worked on it in PT it became less sensitive to touch and I have not had swelling for over a year. Redness has faded with time. Now that my hair has grown back after chemo I can't even see the neck scar from the disection. Have lost the double chin, though! :-) - Kris

Carol,

I did not have the neck dissection, only radiation/chemo. I have some swelling along the jawbone and under the chin which makes the double chin real big. It is real brown with a bright white patch just under the chin. It is also real sensitive and tingles.

Ed

Thanks Ed and Kris for your responses, you guys are lucky, my scar is quite noticeable, especially in the front of my neck, deep indentation. However, the redness and swelling on my face bothers me more than anything, I feel like a freak sometimes. But an alive freak!!!!THanks so much, Carol

Debbie, do not give up on those fluoride trays, they are really essential. It may be that the upper one just needs to be trimmed some to stop the gag reflex. But fluoride is an essential part of any radiated persons future if you wish to avoid dental caries from the decalcification that is caused by radiation. The consequences of losing a tooth a few years out of treatment can be catastrophic. For sure the fluoride tastes horrible, but compared to osteoradionecrosis from a non-healing socket after a tooth is lost, it is nothing.

How long after treatment are you supposed to use the fluoride trays? I finished my treatment Oct, 2002 and have not used the trays since. But, Brian got me scared...

My dentist has advised me to use it at least a couple of times a month - forever.

My prosthodontist has me use it 20 minutes a day with Gelcam every day for the rest of my life. I put them in when I take my shower. Gelcam stains the teeth worst than smoking did. Not cerain how effective it is because I am going to have to have both my upper and eventually lower teeth capped. Maybe it just put off capping them for a few years.

Eileen

hi Debbie,

my story: teams and fluoride trays don't always mix.

Cancer doc says get trays and wear them at nite.
Dentist makes them up for me.
Treatment starts.
Shortly i'm in big agony wearing trays at night. to over come insertion problems, i used ice packs on my head around temples to chill out and cause diversion before insersion. i really have to get right each nite to do it because it almost brought me to tears. then as i sleep, flouride ouzed out and i suffered. i learned to paint the trays with q-tips to reduce the overflow.

then i see the cancer doc who asks how things are going... i say ok, but the trains aren't fun.

fortunately he follows up with. 'how are you using them'

i say put them in before bed each nite.

reply ' i didn't tell you to do that! you only need to wear them 10 minutes'

for me, (a) dentist didn't give instructions and (b) i assumed 'wear them at nite' means all night.

so i left happy that it would be just 10 minutes each evening.

it's a couple of years later now. i smile about it big time, with all my teeth in place.

You can do it.. just get the fitted right and get your head right.... it ain't all night.


cu,
larryb