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.

x28007

I am now 16 mos post Tx and my saliva is probably 90% normal amd my taste is probably the same. I had IMRT which is pretty standard now and it tends to lessen the effects of the rad damage as compared to RT. Your body as well as the targeted rad path will ultimately determine how you heal. Remember though that the healing can continue for years as opposed to months so don't get discouraged in the short term. I have just recently noticed a slight improvement in my saliva which also benefits the taste side of things.

So you may compare I am reposting what I said about my 4th and 5th month post Tx....hope it helps.

Today marks the end of the 4th month after completeing my Tx and I thought it would be useful to others to post my progress.

Taste-I have almost all my taste back. I would rate it 9 out of 10.

Hair on the back of my head-Beginning to grow back.

Weight-Lost 35 pounds and have regained 5. Not sure I want much more back.

High frequency hearing loss-Was tested at Moffitt and they confirmed permanent HF hearing loss caused by Cisplatium. MO wasn't so sure and said to wait. Either I am getting use to it or it has slightly improved.

Mental capacity-Fully recovered or I'm worse off than I think. LOL

Physical-Muscle strenght 7 out of my 10. Haven't exercised like I use to due to dry mouth.

Stamina-Am able to almost work as much as I use to. Work 9am to 7:30pm. Use to work till 9pm but I am pretty tired by 7:30. Can't keep my eyes open by 10 to 11pm.

Turkey chin-Gobble, gobble, still have it.

Dry mouth-This has been the worst side effect to deal with by far. Not in pain but in affecting quality of life. Just in the last 2 weeks I have noticed a slight change for the better. It's hard to describe but it has improved. I would rate this 9 out of 10 being the worst.

All the other side effects I was dealing with at the end of Tx went away around the 3rd week post TX. Those being: nausea, throat pain, constipation, and maybe a few that I can't even remember now.

All in all I am very pleased with my progress especially considering the way I felt at the end of my Tx and I hope that others who are currently in or recently completed Tx will find this useful.

That was one month ago.

As I said I wasn't planning to followup so soon but just in the past 2 weeks something has improved with my dry mouth. I say something because it's hard to define BUT it has made a great improvement in my eating. I still sip water throughout the day but I don't wake up during the night with mouth related problems any more and my eating has taken a hugh turn for the better. I even look forward to meals now as I am beginning to try some of my old favorites that I had given up on. For instance, I ate a small thin crust pizza by myself the other day (well not all the crust) and I even ate a whole slice without having to swallow liquid. I find myself eating almost like normal, I mean taking 2 or 3 fork fulls before I feel the urge to drink. I don't think my taste has improved but that dry mouth crap has.

It's really hard to describe but something has happened and I wanted to share this improvement so that others may be on the lookout.

Hello x28007 I'm 2 1/2 years post treatment for the same cancer you have I had 40 IRMT and 6 weeks x1 chemo with cisplatin and a left neck disection. My story sounds much like Davidcpa. He is right this is a slow process. In the beginning it is very frustrating because we want things to happen right away. I drank a tremendous amount of water post treatment. I still do. I have 80% of my saliva back I eat 90% of the food I did before. Cancer has made me a healthier person. The foods I have trouble with are foods that I should'nt be eating anyway.Like David my drymouth went from taking water with me everywhere to not taking it anywhere with me now. When I'm at home or work I have it with me because I think I've acctually gotten hooked on it. I'm taking a drug 3 times a day called pilocarpne that I believe helps. I'm not sure if thats the same as salegen or not. For most people it takes time to recover from the damages from radiation treatment. Like I said I think our cancer and treatment were much the same. We are the same age and I also did not smoke.The first year is the toughest but then the improvment is remarkable. Depression and I walked hand and hand many days but I was determined to move forward and leave it behind me. YOU WILL GET BETTER. My thoughts and prayers are with you in your recovery. Tim e-mail me with any other concerns

Like David and Timothy, it was about 18 months before I had full salivary function back. It is a very slow process and it takes a long time for the salivary glands to recover from the radiation. If there was one directly in the field it probably won't recover - ever.

I go from having saliva to a dry mouth, especially at night. I could taste after surgery but now everything tastes the same. Salty.. I drink at least 8 16oz bottles of spring water a day plus my usual 6 cups of coffee in the morning. Most food or drinks make my tongue feel like a fire eaters . I'm 4 months out and working thru it and enjoying life to the fullest. Have a great day all.

I'm now nearly 4 years removed from treatment, and I would say I have recovered 90% of saliva, and my taste is near normal.
Salt was the first taste sensation to come back, and everything tasted salty for a couple of months. Sweet was the last one back. Everything was pretty gradual, tastes kind of sneak up on you.
I have enough saliva to go for a six mile run without a water bottle, something that wasn't an option for the first 12 to 15 months after treatment. I now chew Biotene gum frequently to help stimulate saliva. I still need a beverage or lots of gravy to eat, but I have adjusted.

Now spicy food is another story. I have an annual meal at a barbeque joint with another OCF member, and he is able to eat anything, while I sometimes get "lit up" by ketchup. I try to explain to my wife by telling her that her normal defence to spicy foods is salivation, which flushes the hot stuff out. My low saliva doesn't flush my mouth out, so the spices just sit there and cook. (It works for her)

In all, life is great. My daughter just gave birth to my first grandson, and my granddaughter, who was an infant when I was diagnosed, is in kindergarten and the apple of granpa's eye.

The recovery process is slow, but well worth the effort.

Merry Christmas and Happy Holidays to all.

Good Health,

Chuck

Funny but sweets were my first thing to come back and I never used to eat sweets. I'm not talking about sweety fruits cause they still suck but chocolate type sweets and cookies and cakes and pies and ice cream. Now I have to have dessert with my meals because it's the only food pleasure I really have. Fortunately biking 120 miles a week helps in that department. I do find bananas tasty so I eat at least 1 a day usually blended in a skim choc milkshake, yum. Whew, I've gotten off track here.

Hot spicy foods are not fun and even foods with black pepper are not enjoyable to me. I never really thought about the saliva connection but it sounds plausable. I just attributed to my throat being changed due to the rad.

I can ride my bike 50 miles at 22 mph avg and drink no more liquid than I used to but I do have to drink to talk and eat and I try to have sauces on my food whenever possible.

I still taste the best my first bite and right after I drink a liquid. If I eat several bites in a row my taste sensation really drops off.

I'm not complaining because it wouldn't do any good anyway but I'm just adding my facts to this post.

My Dear friend,
On January 11 I will be cancer free for two years. I too had tonsillar cancer and was treated with IMRT, I was as concerned as you about saliva and taste buds. It seemed never ending, however I must say most everything came back 6-8 months , be patient. It is not as before but pretty darn good, I still cannot taste sweets to well, especially chocolate (not my favorite anyways) but all other is pretty good, I still do not go to bed or in my care without something to drink at all times, and it is hard to teach sometimes, but my friend I will take it seven days a week as opposed to the alternative. It does get better, but it sure is slow, hang in there.
Lenny