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