I have to force myself to eat since everything tastes awful and I have lost a lot of weight. But the doctors ok with everything. There are some documented cases of people getting IMRT that gained 2 lbs during treatment. I am twenty days into treatment and eating an egg with toast at the moment

Gary,that you can eat toast is remarkable. Or anything for that matter! By the time I was where you are with rad/chemo, my mouth was one large sore and I depended on the PEG for everything, even water. I am absolutely thrilled that things are going so incredibly well for you.
Joanna

Hi Gary,
I am very glad to hear that you are doing so well, and are almost done with your radiation treatments. It is good to know that, while rare, not everyone needs a PEG. Reading about all the radiation induced oral problems, being able to tolerate crispy, scratchy toast is just remarkable!
Besides a lot of determination, what do you think has made the difference, and let you recover from your earlier mouth problems? Do you think IMRT vs. standard radiation made the difference?
Keep your spirits up and us updated,
Sigrid

P.S.: BTW, SPOHNC SF will have its first meeting at the CCC this Thursday (lead by David Eisele, MD, Professor & Chairman, USCF Dept. of Otolaryngology/ Head & Neck Surgery)

P.S.S.: Did you get the private OCF mail I sent you a while back?

Dear All,
Have been computerless for a while and feel out of the loop but am now on line again and catching up on your progress.
I am starting week 5 radio/chemo (for SCC right tonsil with lymph nodes left and right) and so far so good - the egg-sized nodes are now tiny! RESULT!
The news of the water pik interests me - what is it exactly? I'm having trouble with the flouride trays as they make me gag and the flouride stings the mouth sores like crazy. I use a "Peelu" toothpaste which is very soothing but no flouride - just how crucial is it- does anyone know? When authorities are still debating whether to flouridate water reserves or not.....
Can anyone suggest the best way to proceed from here? My oncologist has delayed the start of chemo week 4 (carboplatin and 5FU's) as mouth too sore and he wants to just fit in one more round not 2 before my 7 weeks are up. Would there be any benefit waiting or push ahead and get it over and done with - it makes the radio effects so much more intense. My mouth is a mess (sores all along tongue/throat) but getting a little better - thank goodness for PEG.
Good luck to you all out there - it's good to be back,
best wishes, Frances.

Hi Sigrid,
I did get your private email but was blocked from responding. I have to be honest, yes I am able to eat solid foods but I have also lost a lot of weight and the jury is out on the PEG tube. I have good days and some very bad ones. I still struggle with nausea and the radiation burns seem to be accelerating (with 12 left) -which is probably normal. Salt burns so I eat unsalted things. For nausea I eat unsalted corn chips and it seems to work. As long as I drink a little water with it it goes right down. I have been struggling with Boost and Ensure.

Frances.... Fluoride is essential and a must for the rest of your life. You will be extremely susceptible to dental caries with diminished saliva. Don't make the mistake of avoiding it because it tastes bad (actually horrible). It is a necessity from now on.

Sigrid... Please go to your profile and turn on the button that allows others to contact you privately. The message board default is for someone to respond to you this way if you have previously contacted them privately.

Gary,
have you tried "Prosure", a new nutritional formula especially made for cancer patients struggeling with excess weight loss?
It has been on the market for about a month or so, and comes in vanilla and banana. I haven't tried it myself, but it can't be worse than Ensure and Boost, and has more calories, as well as 16 g of protein, 5 g of fiber, 1 g of omega-3, 48 g of carbs, but only 6 g of fat, and 8 g of sugar.

You can find more details and order information about Prosure on their website www.prosure.com.
A pack of 4 is $8.80 with free overnight shipping for first time customers, plus 2 free cans of the banana flavor. I'd love to hear some feedback if you decide to order.

Hi Frances,
It was my understaning that most people don't use the flouride trays until completion of treatment. I had my made already and the doctors have been impressed with my dental hygiene. Biotene has flouride in it.

Hi Sigrid,
So far I am still eating solid food. My throat is getting sore (9 rads to go) but it doesn't seem to affect my swollowing.