I realize that there are no answers to this question, but I'm still very curious about people's experiences with Tomotherapy.

As noted, I have Stage 3 BOT (left side) cancer with no other body parts involved. I'm in the middle of induction therapy (voluntary) which suprisingly I managed extremely well. After this I will be doing 5 days/7 weeks Tomotherapy.

I know the list of side effects from radiation. My question is how have people (you) faired with Tomotherapy. I do not want to hear horror stories.
However, Do you feel that the precision eliminated some side effects such as lost taste buds and/or have reduced the side effects such as muscotis. Or recovery seemed faster.

I realize everyone's experience is different, but I hated going into things blind folder so to speak. Thanks Sandy

I had IMRT and I loss my taste and had dry mouth and had mouth sores, all of the things we all talk about. My taste and dry mouth slowly recovered over appx 15 months and my mouth sores went away by the 3 week post Tx.

I have dry mouth big time and my tongue and mouth hurt like hell. Mine could be from the Rad seed implants in my tongue tho. Dang neck and everything above it are miserable too and so far no improvement. Good luck

I'll give you a slightly happier approach to it all. After my mouth healed up from radiation I could taste fine. It took about a month after treatment ended for everything to taste normal - I lost my sweet taste mostly and everything tasted salty there for a little while. I didn't get mucositis until about half way through week 5 and it lasted about a month from that point. I only have dry mouth at night and I eat whatever I want to - I do drink a lot of water or milk with my meals, but that's because I had half my tongue removed and I hate having the food particles floating around in my mouth. Bleh! I have some edema left in my neck from the combination of radiation and surgery, but it's noticeably gone down in the past week or so as my lymphatic system I guess has opened up some. So, hope this helps. Treatment is awful, but my mind seems to have blocked out the bad parts of it all as I've moved on. Now if only I could get rid of this dadgum bronchitis I'll be doing great!

Hope everything goes well for you.

My experience with Tomo is good. I am six month past Tx. I never had much mucositis.

I didn't have an appetite for the first couple of months but my taste was pretty good by the third month.

Dry mouth was moderate starting in Tx and through the first couple months of recovery, but it was never really bad and now it is mild at worse,(I ususally don't notice it, seldom carry a water bottle or do anything special) but I understand it varies with humidity, so it might get worse this summer.

I have some edema around my larynx (Adam's Apple). They are telling me to give it a year and if it is excessive they will remove it.

My eating and taste are fine and have been for quite some time except some things like fruit and melon is not as sweet.

I have recently notice that some of my teeth seem to have become sensitive to cold food (frig temp is cold enough to notice it).

My voice is lower.

I feel just fine - back to normal.

I think whoever programmed the Tomo machine seems to have done a good job

My dry mouth doesn't have a season. It's the same year round. Tomorrow at my Oncologist appt, I get tested to see if I can be in a study for drymouth. My Dr thinks I am the perfect candidate. I have to make so much spit in 5 minutes to be in the study. Maybe I should play chipmunk and go in with my cheeks fully loaded with water. LOL PSA bloodwork, the study and Then an exam by my Onclogist.Finally a cup of morning coffee to end the morning.

And don't forget to find out about the pain

Patty

Patty, the way this mouth hurts,, It would be impossible to forget to ask. I would bet that I have problems. This si just too much pain continually to be scar tissue or imagination. What ever he says, I am ready for it.