tongue flap & neck disection

Hi Jasmine. Late September 2001 I had a total glossectomy with neck dissection.

A piece of muscle from my chest was used for the flap (my bespoke tongue!).

I've been very lucky I think in that I've had no real problems. The only moans I've got are (a) loss of strength and some mobility in my left arm, and (b) I'm still fetching up loads of mucus.

I can't take solid food and feed thru' a PEG tube, but I was told of that before the op. Virtually no taste, and a little problem with speech.

Apart from those - I'm fine, thank God Smiler
Hello Pikeman
I had a tumor removed from my tongue left side with a left disection to my neck, flap & vein from left arm, april 29th this year. Was about to start radiotherapy when another tumor was found right side of neck had it removed last week.was wondering how someone else is coping.
I too have a peg but at the moment I am on a soft diet the peg was left in after 1st op. to cater for my needs during radiotherapy
thanks jasmine
Hi Jasmine - sounds as though you're having a bit of a rough time.

Hope your radiotherapy goes well. It was something that I had no problems with all. BUT there are people who visit this board who've had really, really bad reaction to radiotherapy.

It seems to be one of those things that reacts totally differently with each person. So, fingers crossed that like me you have no problems.

Regarding your PEG, is that going to be permanent for you or just until you've finished radiotherapy?

Whatever, the very best of luck.
Hello Pikeman
My peg is in only till the end of my radiotherapy! hopefully anyway.
How many sessions did you have?
Did they use the therapy on the whole of your neck & tongue area or just selected areas.
It is hard to know if the sensations one gets in the neck & tongue/mouth are the norm after such op's or whether there is another problem.
thanks for your comments
Good day Jasmine.

How many radiotherapy sessions did I have? Believe it or not I'm not sure, 20/25 that's all.

The radiotherapy was on very specific points, mainly on my neck I think.

You mention various sensations. Well, as I mentioned previously my entire tongue was removed, so I guess what I feel in that area must be totally different to what you experience. All I get is a tingling feeling on my bespoke tongue. I've found that I can't cope with really acidic drinks (e.g. orange or grapefruit juice).

The other thing is that in the mornings my jaw is very stiff. This stiffness wears off as I talk and drink..

My main whinge is about the discomfort and loss of strength in my left arm.

Incidentally did you see the news item about the tongue transplant they've done in Austria. Fantastic or what. That must be an incredibly complicated operation, I think they said 14 hours.
If it holds it has to be a huge step forward.

Incidentally, Vinod's right. Some of the stories in "Experiences" are well worth reading. Many of them make me feel totally inadequate.
Hello Jasmine and Pikeman of course et al.
Sorry to hear you are going through this trauma.

The PEG is going to be very useful during radiotherapy to help keep you as fit as practically possible. I had no PEG because my case was different than yours, but instead got so ill from poor nutrition due the effect of the awful taste radio gave me that I could not eat and eventually could not even drink sips of water. So after radiotherapy I ended up in the hospital for a week with a nasal tube that remained for another month.

It's worth noting that radiotherapy continues to work for several weeks after treatment finishes so you do not immediately feel better.

Pikeman I thought the transplant news very interesting although they did say there would be problems as immuno suppressing drugs are needed to stop the tongue rejecting and that might be a problem. Still it is a start in a new field of treatment.

I am abit off colour as I have had 2 sebaceous cysts removed from my head. I have had them a fair time and hope they were nothing sinister. Still it was a shcok to my scalp so i am being kind to myself and resting up after all that shopping I had to pack in!

Pikeman should i tell you I ate apiece of toast in the hospital. Because they brought it after the op I tried it and ate it up. It went down but it only smelt good rather than tasted good so don't get too jealous. On the positive side i managed a little tin of Heinz baked beans with those 4 plastic sausages. I used to reject such stuff, but it all went down a treat - now 9 months after radio for me and some taste is returning....
Well, I suppose I'm too late to wish to Jasmine all the very best for today's "outing". Hope all goes well and that you give us all a positive report!

Pauline, it's no good you trying to sugar the pill! You had some TOAST - I hope it tasted like sawdust.

Seriously, it's good to hear you're eating especially as you've gone as far as eating those strange little sausages. The beans are fine, but those weird concoctions - yuk.

I did pick up on the comment regarding the immuno-suppressants which are, it seems, a threat in all transplant operations. The mere fact that the actual transplant was effected, given the complexity of the tongue, was the thing that fascinated me. Oddly, I only picked up on the one news report on the subject. I'll be interested to see if there's any follow-up news.
LOL I did say the sausages were plastic. They tasted just as bad as every other meat still does. At least they are soft and squashy so go down the throat. The beans taste surprisingly ok.

Now as for the toast - it is not what it was. It is only worth eating as it is a vehicle for other foods like runny goat's cheese. Sawdust - no, but it is like very dry Ryvita - yes it's like ryvita.

Still want some?

Yes and good luck to Jasmine. Pamper yourself and rest up during the radiotherapy. The best tip is to drink 5 to 6 pints of bottled water a day to keep the nausea at bay and great rid of toxins. You need to start the water early in the day and a pint before radiotherapy is very helpful.

Have a look at the mantra I used to say in my diary. It really is useful to focus on specific thoughts during the treatment and try to actively participate in mind killing the cancer cells.
hello there
well went to hospital yesterday thurs, saw my consultant who said the tumor they took out had dispersed & the biopsy from the base of my tongue showed traces. I was then sent to weston park sheffield for them to adjust my mask, next tues. I go for my ct scan so things are moving.
thanks again your notes they are of a great help
Hi Jasmine
Stay positive about the treatment. As it begins to work you start to think if I feel this rough the cancer cells must feel even worse. The main thing is that the grim feeling and oral symptoms are gradual as the radiotherapy builds up. Make sure you get prophalytic Nystatin to prevent oral thrush.

You don't suddenly feel ghastly, maybe a bit strange, but it is possible to cope with especially if you rest up in bed after the treatments each day. Don't overdo things as it uses valuable energy and calories that you need to hang on to to help rebuild the damaged tissue. By the time you do feel ghastly you have got used to the problems. Hope that makes sense. It is unpleasant, but we have all got through it and you can too.

The mask takes a bit of getting used to. I was refitted about 5 times in all. Just remember they want to be precise and give you a good end result. One radiotherapist told me she would not do the work if she did not think it worked. She also told me they were getting better recovery rates as people were being treated faster.

I certainly feel that it was the radiotherapy that has given me a second chance at living.
Hi Jasmine. Do stay positive and try to make something positive out of this experience such as recording your feelings so it will help others if you decide to publish them on a web page. I know it's not easy, but there is only one other alternative and that is to get miserable and depressed about it and that just loads more trouble onto your body. During radio I made sure I put a little make up on every day and washed my hair everyday and tried to maintain my own personal standards dressing well as usual etc., and it really did help my morale. Ok, so you flop when you get back home. But putting that face on for the world is good for you.

Re the bottled water. I found Evian best because tap water tastes even more strongly than usual during radio. The chlorine was all I could taste. I imagine you will still need to wet your mouth even with a PEG. Keep a bottle in your bag at all times. I still have to carry one with me 9 months after although I often only now take small sips, but I have to know it's there. Car air conditioners can sometimes be very drying on the mouth too. I found cold milk wonderfully soothing and think it kept me going.

The radiotherapy will sap your energy, but if you are kind to yourself and don't overdo things you will benefit. If you can eat well, even better. My energy was poor because I could not eat. The PEG will be a great help to you. There are lots of tips on the Acor Listserv Head and Neck cancer site about using PEGS. Such as not using Ensure at the same time as a fizzy drink which clogs it as it emuslifies. Also there are plenty of people there who have survived many operations - one man has had about 10 ops!!! and he is still here so have courage and hope now. We all have to believe we will be in the percentage that survives.

A baby toothbrush helps when you have ulcers forming on the gums as does Sensodyne toothpaste and the whole mouth jangles. I have to confess to using my baby toothbrushes far too long after the radio finished and being told off recently by my dental hygienist. Apparently they wear out after 1 month on adults so need changing very frequently or going back to a normal brush. But the change toa gentle brush and sensitive style toothpaste about 2 weeks in was a great help and eased the discomfort substantially.

Good luck for the future and let us know how it's going for you. We all counted the days down. Once half way you will make it.
Jssmine, I'm so pleased that Pauline has replied to you.

As ever she's full of good advice. I particularly agree with her regarding a positive mind set.

When I read your last posting I thought and thought how to respond. I hoped, in vain, for inspiration.

You see for me it's been so easy. I'd no adverse reaction to the radiotherapy, I'd no surprises regarding the aftermath of the operation so how can I possibly comment on the trials and problems other people have to cope with.

One thing you can be sure of everybody out here, even those who don't post, are with you.

Corny as it might sound my prayers are with you.

As Pauline says, keep us posted.
Hello Pauline / Pikeman
Thank you both for your support, had ct scan at Weston Park today, mask needed slight adjustment because my throoat just above where I had my traci. in was still pretty swollen. They adjusted the brackets which was much better. Next Thursday I'm going to go on the simulator and have consultation with Dr Robinson. My therapy begins 11th August for 30 sessions. Have felt a lot better to day. God bless you both

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