Karen,
Thanks for replying. About food and taste, everything tastes AWFUL and it's hard to keep eating. About a year out from the end of the first round I suddenly realized that I could tell I was eating carrots; they tasted like carrots and I thought some taste would come back but it never did. The second round of treatment wiped out the carrots and made everything taste even worse. Maybe that will modify as time goes by.
Good luck to you and your love with getting through the treatment; it will get better slowly with time, I hope.
Pat

Patricia, you are no longer alone. You have found a great place to compare your progress with other survivors. The sense of taste can take a full 2 years for improvements. I hope you will be able to regain it again.

When you have time please add a signature. It will help us to get to know you easier. Click on the 'my stuff' tab then on profile. At the bottom type your info in the white box.

Patricia,

Exercise is important imho. I've been athletic my whole life and find I'm more myself when I get to run and lift. It's not as awe inspiring as it used to be but it helps me feel normal. I make sure I have water and mouthspray and gum, then I run bleachers, sprints then distance then hit the weights. Makes me feel good and also wears me out so I can sleep. If I keep "watering" myself I do pretty well.

Christine,
Wow, you have been through a lot. Thank-you so much for responding. I have pretty much given up hope of getting any real taste back, just hoping the awfulness will be reduced.
I guess all we can go to keep on truckin.

Thanks, Eric.
Somehow I just can't see how I could actually exercise as it's so intensely unpleasant with my mouth but maybe I can figure out a way to just bear it. Water doesn't help; in fact, water makes my mouth worse and I have to swish my mouth with Biotene after drinking water but maybe I can figure something out. More power to you.
Pat

My Dr prescribed Pilocarpine to assist in stimulating saliva production. Worked for me. I am 2+ years out. Quit using the RX about three months ago. I am happy with where my eating/saliva is at. Definitely not at pretreatment level but pretty good. Do not loose hope! Just keep trudging.

Patricia:
Don't eer give up on anything. I'm almost five years out (YAY) and my taste and saliva production seem to keep improving (Slowly, but improving). My Surgeon said that what physically can't change in my body I can continue to adapt to.
As everyone is saying, keep pressing on! Best Wishes.
Steve

Thanks Carmen and Steve,
It helps to hear that things improve slowly after 5 years. I tried the medication but it didn't help; salivary glands totally fried but am thinking maybe I should try again.
Pat

Patricia, Eric and Jen.
I had to find a psychiatrist. I was so anxiety ridden from this that I was having anxiety attacks that would make dry mouth worse and I could not sleep. He put me on a low doss Mirtazapine. In low dose it makes you sleep I needed that. The oncologist gave me Salagen for the dry mouth. I hear it works for some and not for others. I am hesitant to take it as I was over medicated during my treatments which ended May 26th 2011.

My prayers are will all of you.

Patricia - you've been through an ordeal... wow. But I'll agree with the other posters about salivary recovery. My mouth was like the Mojave for months and months, maybe a year. But gradually around 12-14 months it started to return to some kind of normalcy. Nothing like before, but much better. In fact now, maybe 26 months after my last trip on the ride (as I called RT), it's even better than it was 6 months ago.

I never tried any direct medication for this but if it's out there, why not give it a shot?

Keep us posted. Thinking of you.