I finished radiation the day after Thanksgiving. 5 days aweek for 7 weeks for squamous cell carcinoa. I can taste things ok. Used to love chocolate can't stand it now, how ever I still have no spit no saliva what so ever when can I get that back? Will it come back?

It's different for everyone that goes throught the radiation treatment and it takes time. Some of it came back for me but it's still greatly diminished. I used the Biotene products a lot especiall the mouth wash. I no longer appreciate chocoalte the way I used to either. And like you very happy to be here!

Lepreckaun, You and I finished about the same time and I'm in the same boat. Some of my taste has come back but my tongue feels like somebody hit it with a torch if I get ANY spice on it. And for a cook and BBQ judge, that sucks big time. Everybody says...give it some time and most of it will come back....so I sit and wait and ejoy my PEG tube and broths.
Glad you're here Too.

Lepreckaun,

It's odd that your taste is okay but saliva is an issue. That just shows you how different the reaction is for everyone. There just seems to be no blanket effect or answers to these type of issues as we all just react differently. There are a couple of different Rx type drugs that seem to help with saliva issues with some folks although did not help me. I tried the one called Evoxac with no results. My ENT told me that they work better the earlier you try them as opposed to waiting over a year out of Tx as I did.

Bill D.

Lep,

Your only 1 1/2 months out and that time is nothing in your recovery phase. Even though nearly all of us undergo rad, we are all different to begin with; we don't get the rad exactly in the same spot or intensity due to many reasons and therefore the damage we suffer is different from patient to patient. That means we all can recovery to varying degrees. But one thing we all have in common is our recovery takes many many months and it's a teeny, tiny step at a time.It's not like one day you wake up and you say, OH MY GOSH I CAN TASTE BETTER...no it's more of you thinking for a few days or a week that something may have improved and of course looking back months before you really can notice improvements.

I remember posting my improvements for the first time when I was 4 months post. I'm now 16+ months post and I am still seeing improvements. You will get sick of hearing this but JUST BE PATIENT, IT WILL GET BETTER.

I am 7 months post TX and my saliva is still dry. I have started to notice a tiny bit of improvement on the side that was not treated, but it isn't much. This dry phase seems to take the longest and I am tired of waiting, but there isn't much that I can do BUT wait. Hopefully, like everyone keeps telling us, it WILL get better.

It sure is hard being patient waiting to get back to normal. I completely understand how you feel, it sure is a long road. Just watching TV and seeing commercials about everything I cant eat makes me sad. Im about 4 months post treatment and still barely eat. I can handle yogurt, pudding, some very soft veggies but no meat or anything dry like bread or snacks. My taste is at about 80% which seems to be good, but I have no saliva. I did try a medicine (Pilocarpine) to promote saliva. It didnt work, made me sweat and sick to my stomach. I know there are other ones out there, check with one of your doctors.

I am on Exovac which seems to work somewhat, although you have to be careful when (and how many) you take the pills... otherwise you end up in a pool of sweat.
In my case as well one of parotids was only minimally radiated, nevertheless it also folded up for a while. It may take a while for it to come out of hibernation.

M
.... just to think that I USED to like salt and vinegar chips!!!

007, Christine and Mark,

Believe me I know what you all are going thru and I wish I could snap my fingers and time warp you all ahead a year but all I can say is I am just now REALLY starting to enjoy eating again and it has taken all this recovery time for me to be able to say that. There is nothing I can't eat now and I push myself to see how many bites I can swallow without reaching for the liquid. That, to me, increases my eating pleasure because I haven't been able to do this since that horrible life saving Tx began. I still have a little dry mouth but nothing like what I had at your stage. My taste is almost back to pre Tx and it seems to improve as the dry mouth does. Hopefully you'll will take less time than me.

Hi Lep,

Hang in there. It will be a while before you get any saliva back. I think I was around 9 mo. or so when I noticed some. I have about the same right now. (2yr.s out) We are all different and I hope you end up with more than me.

I am not sure how many saliva glands I have working? There are times I can feel and taste the ones under my tongue!! Which that is good. I also have started to massage the glands and that seems to help. Pulling my tongue back also seems to produce some extra saliva. (I think that would be considered Milking the tongue or saliva glad) I am guessing here, but it seems to help.

Make sure you use all of the Biotene products. They really help with the DRY mouth. They help me a lot. Also keep eye out for yeast infection,(Thrush) which can happen with dry mouth. Very painful.

Ok, bye for now..hope some of this was helpful
Take care,
Diane