Hello, everyone.
I joined this forum because I feel I am lucky, in the fact that I responded well to my Chemo & Radiotherapy treatment. I had 6 Chemo and 33 Radiotherapy sessions. I finished treatment on 13th December 2004. I came back to work on January 4th, I am physically feeling fine. My questions to anyone who can give me there experiences regarding taste and saliva. I still after nearly six weeks cannot taste food. I can chew and swallow reasonably well, but no taste is nightmare. Please tell me how long it took you from completing treatment until you enjoyed a meal again. I know we are all different I just need a gauge. Regards James, UK

Hi James, I had 2 sessions of chemo too ill for 3rd, and 30 of radio. Finished mine 24th Dec and still cannot eat, I can swallow small amounts of water but my throat still feels red raw, any food I try feels as if it is burning as it goes down. You seem to be doing better than me. I'm still taking morphine every 4 hours and could'nt possibly go to work as no energy at all. Have tried tae, coffee and Ribena and all taste funny, but I do have a sense of smell.
What did you have your treatment for? Mine was Ca larynx.
Sue

Happy Christmas Sue. I don’t think. Poor you. I thought I was having a hard time watching my family eat copious amounts of food and swallowing all my best wine. I said I was lucky and by what you have written you can see why.
I was diagnosed with cancer of the tonsil in August 2004. I had this removed and the 2 weeks after I had a neck dissection to remove the secondary cancer in the lymph glands. Went to Spain to recuperate and got an infection. An abscess on my jugular vain. I underwent emergency surgery, spent 24 hours in IT. Eventually got home 6 days later. I had to have Gastro tube fitted into my stomach for feeding later in the treatment. Then we started the old 33 radio and 6 chemo. I had 7000CgY of radiation and 600cl of cisplatin.
Whoppeeeee.
I managed to work and eat up to 4 weeks into the treatment. I had the usual symptoms, thick saliva, then too much. Ulcers, sore throat, bleeding at times. Bleeding gums. etc etc. Best thing I took for all these symptoms was, Guess...Gargle with soluble disprin x2 with salt in warm water. Better than morphine, difflam, aloclair or any other pain relief or treatment. I did this 6-8 times a day, It helped for me. I found morphine made me very dry. and co-codamol made me constipated. So it was back to simple remedies.
I finished the treatment as I said on 13th December 2004. The week after was the very worse time. I had trismus and allsorts. I could not drink even water and was at my lowest at this time. But I bounced back and on Christmas day I had 1 sprout, 1 cm of turkey, and a bloody large glass of red wine. Since then I have been drinking 3 litres of water a day. For breakfast I would have sugar puffs or rice krispies. Lunch, mushroom or chicken soup, but dinner has been a problem. The wife cooks usual meals but I find it so difficult to enjoy because of NO TASTE. I can chew and swallow no great problem. Tonight we are having Liver...HAhhhh HAHHAh that'll be a laugh.
I keep my spirits up and as I said I do feel that I have come through this quite well. The only thing that is bugging me is the taste issue. I know I am being impatient and 8 weeks is more realistic, but the oncologist said 6-8 if your lucky. So I will be ringing him at 2.15 on Monday 24th January to ask him ‘EXCUSE ME WHERE IS MY TASTE?’.
Good luck to you and try and smile. You will be OK. One day you will look back and say what’s all the fuss about. A walk in the park.
God bless.

You won't like this but it's over 2 years since my 30 sessions of radiotherapy and my taste is still up and down. It's been reasonable for 2 weeks and I've been eating fairly well then suddenly lunch time today it went off again. That usually means it may be off for say 10 days to 3 weeks before it comes back toa reasonable state and it's never been as good as before radiotherapy.

During this last 'good' bout of taste recovery I have for the first time in 27 months been able to eat fresh pineapple chopped small. I had some of it yesterday and it was fine. Today I took a mouthful and I had to spit it out as it tasted like neat strong citric acid.


So it's a very slow job. Your consultant is really not helping by saying 6 to 8 weeks and I'm sure there are many here who have found like me that 6 months is more likely the time you begin to recover taste. For me it was a 22 months before one day I said to my husband that I had really enjoyed something - blackberry tart from some blackberries we collected. It tasted like nothing else had in almost 2 years.
Bliss for a moment.
It will come, but it is slow. Monthly rather than daily.

James Bagnell,

Lucky you. To me your rapid recovery seems remarkably quick and trouble free. I considered my own recovery very quick and with essentially limited pain especially when compared with the experiences of many other members of this forum. You seem to have set a record.

My radiotherapy-only treatment of 6 weeks finished on 26 September last (4 months ago) and while I am getting some taste buds back (by no means all), my problem is limited saliva. Each mouthful, after a few chews, must be washed down or more acurately assisted, by liquid intake.

I am hoping my taste buds and saliva will return sooner rather than later and certainly quicker than some others!

Oh!, my problem was a size T1 squamous cancerous tumor at the base of the tongue. This was lasered out on 11 August, 04. Thereafter followed radiotherapy.

Anyway James, continuing good luck to you. It is good to hear of rapid recoveries.

Regards, Fridge

Hello James, My taste buds came back and my salvia in about 2 years after. Just one day I didn't have to flush tons of tea or water down my throat. Just like that. It was awsume. I hope the same will happen with you...Always Vicki Lynn

Well I must say, thank you so very much Vikki, Fridge and Pauline for responding to my question.

I have read all about you Pauline as you were the first persons experience I read prior to under going any treatment and I must admit I nearly never came home from Spain to start it. I showed some friends your radiation burns and they were horrified. But remarkably you now look wonderful and you are an inspiration to us all on this site.

I myself never had any burns or blisters; in fact you won’t thank me for saying this after now nearly six weeks since completion you would not really know that I had any. (I feel a fraud)
Like I said earlier I feel very lucky compared to nearly everyone else’s experiences.

I am back to work 24/7, going back down the gym 3 times a week, not too much cardio-vascular as I do have (you will be pleased to know ‘Xerostomia’)
Which as you all know is a dry mouth.

Well last night the wife cooked Liver, onions and gravy and I managed to eat half of it, with half a glass of water, It never tasted wonderful but was just palatable.
But…This morning WOW. I had a poached egg, crispy bacon and a spoon full of beans and I ate it all with NO water. Impressed? I was. It even tasted OK. So maybe I am a fluke of this wretched disease. I will carry on fighting until my Sunday lunch of roast beef and yorkshire puddings are as tasty as they were back in August last year. (Someone will have to explain yorkshire pudding to Vikki.)

In case anyone was wondering. I am 43. I used to smoke and did enjoy a tipple or 4. Also I did spend most holidays with my face looking into the sun. If anyone one want to email me direct please do so, as I would like to help anyone if I can as I have had a lot of inspiration from you guys. Regards James.
James@waltonbathrooms.co.uk

I'm just so glad your taste is recovering so rapidly. I think what it boils down to is we are all different. Someone locally I know had a tongue/flap op and he had rads 3 months after me and was working mostly through it and immediately after. I was still very frail when he was doing afull time job.

He was half my age though and everyone is just different.

You say you had minimal burning. I'd hate to think my picture put people off. I hoped I'd shown them in a way that people see that skin does heal. Yes it was damn uncomfortable and felt like torture but i think of people like Simon weston and how he came through all his mas body burns. Ours are justr to one spot.

It could well be that since some of us had ours a few years before you the treatment may be just slightly different. I know I've been told since they now use atreatment which saves the salivary gland.

You also say you sunbathed which makes me think you may be darker skinned and can take the sun therefore coped better with radiotherapy skin damage. I am very fair, have always come out in a rash in the sun and my worst nightmare of burning did happen.

Thinking back my consultant told me 6 months for taste return and I had read on the internet 12 months to 2 years, so I was mentally forewarned and prepared for a long haul, but frankly it is disappointing when it does take so long and you get kind of tired of the up down tasteing too, although now I am used to the routine. But as mentioned before it is better than being dead and better than having a peg or a nasal tube.

On the Acor listserv for head and neck cancer someone recently reported sensing an old taste again 7 yars after. It was salt and vinegar crisps. He said the day after eating them the taste of everything was heightened.

You sound very cheerful and I am glad for you that this is not taking the toil it does on some. The main thing is to throw your heart into the treatrment, believe it will work and get on with life as before as soon as you are able and you seem to be doing all that.

I also feel afraud being on here as I have not had a neck dissection like many, but I'm not going out of my way looking for one!! The fact is whatever treatment we do have with this, leaves us all with problems of some type or another and sometimes it's just great to let off steam about it.