Hello ~ I am 5 1/2 months post IMRT for tonsillar cancer. My saliva is barely working and feels like a thin coat of paste. My mouth gets dry very easily too. Can any of you ahead of me in recovery tell me if your saliva returned to normal or near normal? I'm scared that I will never be able to eat regular foods again if my saliva stays this way! I'm getting very depressed with this very long recovery period and don't know what to expect. Any help will be very much appreciated.

I am 5 months out, and have similar problems. What I find, however, is that I need to force myself to drink LOTS of water. I got in the habit when going through treatment, but got away from it when I could start tasting other stuff --coffee, coke, fruit juiice. Unfortunately, all of those things actually dry my mouth out, but because they are liquid, I don't think of it that way.

If I keep up with the Salagen, drink lots of water, and have water handy at meals, I can eat just about anything. Sandwiches with thick bread, crackers, etc. are probably the most bothersome, but even they go down fine with a little extra water.

If you aren't already, start using the Biotene products -- mouthwash, toothpaste and mouth rinse. They help a lot.

My husband is 4 months post treatment for base of tongue cancer. 1 month post treatment he started Evocax to stimulate more saliva. It's not the ideal solution for everyone, however, it's been great for him!

He started with 3x per day and now is down to 2. A common side effect is sweating. With the 2/day, he doesn't have any issues with sweating and his RO and MO are both impressed with his saliva. It took about a week or two to get into his system. And, he takes it the same time every day.

He can eat anything and he no longer has to swallow water with each bite. I wouldn't say his saliva is back to normal, although near normal is probably right.

Right now, his frustration is his taste buds. Nothing tastes like it should.

x28007 and Jeff, at 5+ months how are your taste buds doing?

And, fatigue. He is back to work part time, but needs far more hours of sleep than he ever did. Most days he retires to rest or sleep after dinner. He just had his thyroid tested and all is fine there.

Are you two still dealing with fatigue as well?

Margaret and Jeff, Thanks for your responses and suggestions. Jeff you are amazing...being able to eat regular foods like that already! Way to go! Margaret, my taste buds are pretty much back to normal and the fatigue went away at about 3 1/2-4 months. I hope your husband gets better with each passing day. Good luck to you both. Oh, by the way, is Evocax a prescribed salivary stimulator like Salagen? I have a prescription for Salagen but haven't had it filled yet.

Yes, Evocax is a prescription. I do not know the differences between Evocax and Salagen. I believe they have a lot of similarities. We were led to believe that Evocax was newer and had less side effects, but thinking back I can't recall where we got that info.

Great news that the your taste buds and fatigue levels are back to normal!! Thanks for sharing. I know everyone recovers at their own pace. However, it provides much hope to hear how well you are doing at 5 months.

I hope the Salagen works well and that each day gets better and better for you too!

Try the Salagen. I need to remember to take it enough. My RO said up to 4x day is normal.

My taste is about 75% of the way back. Chocolate tastes better, but not the same as before, and overall just a little diminished taste.

I never had a big problem with fatigue. I continued working through treatment, except for 3 days in the hospital for the neck dissection. Now that is not a recommendation to anyone, just the way it was. I tend to overdo in the other direction. ;-)

Jeff,

Funny but chocolate shakes taste good to Dan even though the sugar taste doesn't come through. Every week there is marked improvement. Sometimes he looks down right sad when he has thought of something that will taste good and it doesn't taste like it smells or how he remembers it.

I'm sure that will pass, hope it will be soon.

I forgot you were superman and worked throughout the treatments. Am hoping my husband catches up soon on that front. How much weight did you loose? I'm wondering if the weight loss is a contributing factor to the fatigue. He lost about 35 lb and can't seem to gain it back.

I went from 236 to 205, so about 30 pounds. However, about 6 of the 236 I intentionally added before beginning treatment, and the rest was , shall we say, available to be lost .. . ;-)

I am holding steady about 210 right now, which is really 10 pounds over where I should be, but in the scheme of things, I really can't get worked up about it right now.

I believe this is a question for your doctor because largely it depends on your treatment.

I had field radiation to both sides of my head as well as throat and my main salivary glands were basically nuked. Now, 4.5 years later I have an extremely dry mouth and my diet is restricted because of it.

At first I got quite angry about it but I have learned to live with it. I must have the healthiest kidneys around because of all the water I drink! It is one of the radiation gifts which I just have to live with, but I am very happy to be a survivor.

I do hope that your saliva loss is temporary. Love from Helen

I am glad that your salivary glands are returning. My mothers never did, I agree with Helen, it depends on the Dr., course of treatment, and each person's experience is different.