Hey guys,

It only took a week of radiation on my tongue to make me lose my sense of taste. Everything's just slimy and bland and occasionally makes me gag. I still manage to tough it out and eat, and there's no pain or anything yet. I have a PEG already for when pain makes me stop. But after a week of not being able to taste, I'm surprised by how depressing it is to not get any pleasure out of eating, formerly like my favorite thing. I'm looking for reassurance that taste will come back. It will won't it? And maybe on estimate for how long after treatment? Sigh.

It will come back.. not immediately so don`t be disappointed that when rads stops it doesn`t return... it`s a slow slow process. I am now 13 mos out of surgery 10 mos out of treatment and I am still missing most of my sweet, and salt comes and goes. But natural foods taste best. Processed foods taste like CRAP and pop like turpentine. It can be depressing but you will get through it. DO try to maintain your swallow as much as possible even if it`s through drinking luke warm water or ensure. Good luck...
I am not sure if it was mentioned before but radiation is cumulative so when it stops it still gets worse for a few weeks so don`t freak out when you dont feel better. Take care and try not to despair.

Ben; Im into my 6th of 7 weeks rad / chemo. My taste was gone within 10 days and everything tasted of salt . Even water was like sea water. I know what you mean by gag. What it turns ut to be is the accumulation of the thick secretions in the back of the throat that acts just like you had put a finger into the back of the throat.... you know. anyway its more or less a mechanical thing not so much a true nausea but it sure isn't fun. I manage by swishing water in the front of the mouth and keeping the mouth moist then kind of hoof it from the back of the throat.
I geo a PEG about 2 weeks into therapy and have been glad I did. Couldn't take anything by mouth only sips of fluid. I did find that drinking some kind of soda water with flavor only ( no sugar ) helped break up secretions and also was ok to sip down. The PEG is your friend take good care of it and keep it flushed clear. I CAN taste a little coffee if I sip it... give that a try.
Everyone on this site will do their best to support you.... Need to talk, check your mail for my phone number.
Jack Snodgrass

Ben, losing your taste is something all of us go thru when we do radiation. It does vary from patient to patient. I was able to drink chocolate Yoo-Hoo thru out my treatments and enjoy a very slight chocolate taste. The cool thin liquid helped to soothe my sore throat. Plus it has alot of calories and vitamins in it.

After about 3 or 4 weeks post radiation you should begin to get your sense of taste back. This will be a very slow frustrating process. One day you will LOVE peaches and the next day they will burn the heck out of your mouth. It takes up to 2 years for this to return to your new normal. The new normal is the new you that is left after going thru all of your treatments and recovery. Its still you inside, that cant change. But outside you may appear different and you could have some after effects that stick around for a long time.

To make things easier to go thru, I would chose an upcoming holiday and use that as a marker to make small goals for myself. I had finished treatment the end of September 2007, my goal was to have a huge Thanksgiving dinner and actually sit down and eat with my family. I was able to accomplish this. At 2 months post rads, I was able to eat mashed potatoes and sweet potatoes. It was the best food I ever tasted! My next goal was Christmas dinner which I did a little better with. You will get past this difficult phase in your life and get better. It just takes time and it can be frustrating taking 2 steps forward and one step back. Here is a list of easy to eat foods, they are a smoother texture and most of us can swallow them easier than dryer foods.
List of Easy to Eat Foods

Hang in there, you will get thru this!

Two years--that still gives me time for improvement. Thanks for that hope Christine!

Your taste does change and stays that way for a while, how long I do not know. I enjoy eating food but it is different. I do notice more saliva now, just over 1 year past radiation/chemo, and on my "bad side", where my cancer was on the tongue I know have a sweetish, odd taste, which the PA to my oncologist ENT says is very normal, and does mean saliva is starting up. For me taste and saliva return have been related.

Best,
Anne

Ive even heard about patients who have had improvements after the 2 year mark. There is lots of hope for you to have a better sense of taste.

Kevin is only 4 months out and he can taste everything. Some things taste a little different he says, but he can taste them. Sweet is REALLY sweet so he's not eating many dessert type things.
Everyone is different so ride it out and keep giving your taste buds different things as you can. Once tx is done, try different things all the time to maybe "wake" things back up. Not sure that has any medical validity, but it worked for us!!
Kathy

I think the difference in the return of one's taste may have a lot to do with where your cancer was and where the rads was aimed. BOT or cancers of the oral mucosa may not receive the full bulk fo rads directly to their tongue where as oral tongue cancers get a major blast to their taste buds! which is why some may take longer to heal. Also individual anatomy plays a role of course. I was told I received bilateral radiation to the neck with the bulk of my radiation being focused on my poor tongue - - but slowly it's all coming back! Take care all

Alex told me yesterday that he thought he could taste the strawberry Ensure. Damn shame he was drinking the chocolate at the time

That is wonderful news for Alex! I hope you didn't tell him it was chocolate.