I was diagnosed with tongue cancer in March 08 and had surgery on April 22nd 2008. The tumour was removed and lymph glands in my neck. I didn't need any further treatment as there was no trace of cancer in the lymph glands. By the way I have never smoked or taken an alcoholic drink, supposed to be contributing factors to mouth cancer! My biggest problem at the moment is a continuous salty taste in my mouth which is driving me crazy plus a raw kind of feeling on my tongue especially if I talk a lot. I would be most grateful for any help to ease the problem

Hi Marie

Congratulations! Welcome to the site.

Our stories are quite similar. I was diagnosed in January 2005 and had surgery on February 4 2005. To quote Adam Ant, I "don't drink, don't smoke..." The left side of my tongue was removed and replaced by a piece of my right forearm. Did your docs build a flap for you? My lymph nodes were clear, too, so I didn't need rt or chemo.

I've not been bothered by any kind of odd taste in my mouth; my strange sensation is more tactile. I can only describe the feeling as narrow wale corduroy. Might I suggest that you always keep water handy? Maybe there's something that needs to be rinsed off. Another idea is to brush your tongue, using either an actual tongue brush (looks like a dental mirror with very short bristles) or your toothbrush.

As for the raw feeling, is there a possibility that your tongue is rubbing against a tooth that is cracked, rough, sharp or broken? If I talk too long, too loud or too fast I tend to get what I call cramps in my tongue. My flap gets tight and the feeling goes down into my throat until I feel like I'm going to get sick. I cough REALLY hard and it usually clears up. I've tried to explain it to my doctor; he says it's most likely muscle strain because Flappy doesn't have the same support as my native tongue.

Talk to you later.

Julia (and Flappy the tongue flap :P)

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Hi Marie and welcome

Like Julia my story is very similar. I was diagnosed in January 2008 and had surgery in February 2008 with the left side of my tongue being removed and replaced by a piece of my right leg. I also had the lymph glands removed from the left hand side of my neck. Although the lymph glands were clear I had a 6 week course of radiotherapy as they did not get a big enough margin from around the tumour, only because of where it was. I too have never smoked and only had a drink on special occasions.

I also have a strange taste in my mouth but I don't know whether I would describe it as salty, just very stale, despite cleaning my teeth 3 or 4 times a day.

You say that you have a raw kind of feeling on your tongue especially if you talk a lot. Would you describe that raw kind of feeling as a tingling and burning sensation because this is how mine feels. I have been told that it's to do with the re-generation of the nerves that have been damaged. I am on medication (Amytrypline)to help this.

Does your tongue swell up at times and do you have problems with your speech when your tongue is sore? I certainly do and find that my speech slurs when it's sore, when I'm tired, or am a little nervous,speaking to strangers.

Although I cannot give a solution to your problem I found that having joined this site and discovering how many people were having problems similar to mine helped me cope with it a lot better and I hope it does you too.

By the way since my op, my new party trick, should anyone ask to see my leg, I stick my tongue out, well open my mouth because I can't stick my tongue out.

Talk again soon

Sue

Hello, I too did the tongue and the neck dissection but I had to endure the radiation thanks to one little lymphnode. I do get salty taste I just try to drink a lot of water to help. As far as raw not so much but about once a month my mouth goes to pot and I don't eat well for couple days. Now I am dehydrated thanks to that.

Hello Girls
Thank you so much for answering my question. I didn't have any reconstruction on my tongue. The surgeon told me that the discomfort I have in my tongue is due to the saliva glands which appear to have swollen on the right side where I had the surgery but he said there was no cancer there. They have also talked about the nerves being cut during the op which may cause the salty taste but they don't say if there will be any improvement which is a bit depressing. I am so glad to have found this website as I don't know anyone who has had tongue cancer so it's difficult to compare problems. I have started to drink more water and I eat fresh pineapple which helps a bit but the mouth problem which you can never get away from does get me down and I feel sorry for myself! Thanks again.
Marie

Hello Marie ,my husband had Nasopharyngeal cancer and was treated 4 years ago and currently again last may .His treatment was Chemo plus RT first time and IMRT second time .

Although both your cancer and treatments have been different Paul started to experience a horrible salt taste in his mouth some weeks ago and also his mouth felt different similar to what you are talking about .

As of yet I don't have any answers to this but at moment there is suspected nerve damage from RT and after reading your post wondering If Paul's salt taste could be related to this as you were told, will be better informed next week and get back to you .Does not matter what he puts in mouth even water feels as if it has a good measure of salt in it .He has just recovered from a rather nasty infection which started some weeks after salt taste began then went into a nasty mouth ,throat and chest infection ,although this has been dealt with and his mouth clear of thrush and ulcers again but the dreadful salt taste is still there ,you are the only person who has mentioned this so I am interseted to hear you have been told could be nerve damage .My hubby is to get results next week of theese new symptoms( just to reassure you my husband has been experiencing unusual pain and numbness in face followed by nasty chest infection and this has been the main problem the salt taste has nothing to do with infection he contracted ) so will post back if I get any more information on the salt .

It really gets you down as very time you try to eat all you can taste is salt but just make sure you have no thrush and keep the fluids and nutrician going if I can get an answer to this I will be back to you as it is driving my hubby mad.Normally my husband copes well with water and saliva sprays but the salt taste is too much to bear .Hang in there I am sure if we all keep searching we will find an answer but I will ask again about this on Tuesday .

Best wishes ,

Bell

There's a live thread going on right now in Medications, Treatment and Procedures, "A fruit that improves the taste of food." According to reports, it's not a hoax or a get-rich-quick scheme.

Balanchine's Thread

John Fernandez found a local guy (Sussex) who sells it on eBay. John is ordering it and will give a report.

Hang in there - relief may be on the way!

Mimi

quote:

ply

Hi Marie,

I had cancer of the tongue and lymoh nodes and had 6 weeks of radiotherapy back in April,August 2007. My saliva completely went until only a few weeks ago and now I can actually lick half an envelope now-whooppee!! Its a nightmare really and does get me down sometimes.I too have a salty taste and anything that does have salt in it just tastes like someone has poured a kilo of salt on it.The only thing I've noticed that makes it a little better is to use sweetner on everything as it seems to counteract it but then everything does then taste sweet! can't win but as I've got a sweet tooth I'm ok with it.I put sweetner on tin tomatoes,sandwich fillers etc as without it it would be too acidic. tastes wierd but at least I can try a few new things.

Let me know if things improve,Sammy x

HI mary,
I had cancer of the salivary gland. It was removed, and i had radiotherapy. After about a week of RT treatments, my mouth was full of big blisters, and half my toungue looked as though it was cooked. that was when the salty taste started. I assumed it was the fluid from the blisters. I find that soda-water with a little lemon juice tastes best. Nothing helps for the salty taste. It really is dreadfull. My RT treatments are over now for about 2 weeks, and the blisters almost gone, and I think the saltmine is getting better also. Hang in there.
San.

Hi, again, Marie,

My saltmine is definitely getting better. I've been sipping soda-water with ginger ale since yesterday. I do not know whether this was the cause, i feel better generally too. I could get by with less co-codamol too this morning, but you could try.

Wish you well, San

Hi All
I have had the same problems, but the sound of soda water and ginger ale sounds very nice I must try it.

I had my tongue totally removed in March 2005 and although at first it was a struggle,I am pleased to say I am still doing well

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