Hi guys, I have only yesterday been diagnosed with tonsil cancer and had not even heard of it before. I am very scared at the moment and a bit down but have been so impressed with this site and everyones helpful and supportive comments and tips etc. I have been reading some of the discussions and I don't know if I feel better or worse though. I just did not realise what seems to be involved and the traumas to go through but at the same time it seems reassuring that all of the various side effects of the rad / chemo have various tips to ease their effects and everyone seems to be doing so well despite obviously a very difficult period.

I am just about to start my c & r and now know what to expect. Would you recommend to put as much weight on as possible before treatment and when can you expect to perhaps begin to eat etc and weight gain. I know everyone must be different but any tips and advice would be most welcomed? Also what is a peg and is this good or bad? - there is so much to take in. Really good to talk to you all. - Alan

Hello Alan

The general advice is to put on some weight as you will lose it. High calorie foods are cream cakes, etc. Have a look at the tips in this past post on put on weight advice please.

For information about PEGS, click here. If you want read past dicussions about PEGS, click here. I am sure the members here will advise you on their experience of using a PEG.

Best wishes
Vinod

Hi Alan,sorry you've had to join us, but wellcome, there are a few members here who have had Tonsil cancer, including my Husband who also had Chemo/Radiotherapy. He was advised to eat all his favourite foods & not to lose any more weight,( the first time in his life he,d been told that) He also had a Peg tube for about six months.Its a life saver.
My advice would be to think of all your favourites & savour them with your favourite Tipple. Enjoy!
All the very best, we are all with you in spirit.Ask any questions you want, someone will have an answer.

Hi Alan,
Sorry to hear your news.
This site is brilliant for help and advice!
As Dr.Joshi and Fran said, it's definatel a good idea to put on some weight now. & thoroughly enjoy every thing you eat because for alot of us it's never quite the same again!
The PEG tube will be a god send - takes a little getting used to but wouldnt be here without it! Takes all the preassure off trying to eat when you're really not up to it!
Keep us posted on how you get on!
Michelle

HI Alan

Have just finished 4 weeks Rt (55 Grays) and 2 Chemo (cisplatin) on the 20th April for Tonsil Cancer and a tumour to the side of it.

I agree with all the information that these goog collagues have provided,and will continue to provide pre,during and post treatment

Dave
Dave and Sue

Hi Alan

Sorry to hear that you have just been diagnosed with tonsil cancer, likewise I was diagnosed with the same Jan this year.

I am six week post treatment starting to eat real food, even had a drink of beer over the weekend and apart from a few minor problems beginning to feel well . Went back to work 3 week ago ( well sort of back at work).

There are a lot of very kind people on the site who are so helpful, the website and the people who run it are brillant.

I am sure that if you have any problems there will always be someone who can help.

Re the PEG I did not have one fitted (after a long discsussion with my consultant). He reckoned that as I was only having one side of my neck "mircowaved" I should be able to continue eating.

He was both right and wrong, I had about 10 days of where it was really difficult to swallow and I could only just about drink fluids and it was tough ( it would have been great to have a PEG then), on the postive side I did starting eating (mainly mush) quite soon on.

You need to discuss the Pro's and con's with your Doc.

Regards


Tony

Hi there, I am nearly a year on from diagnosis. This time last year was full mof hospital appointments and tests. What a stressfull time!.
Once diagnosed with Tonsil cancer I honestly felt better.
I had my Peg fitted before my neck dissection and what a god send it was. I actually needed it in hospital as I had complications of a Chyle leak which meant I could eat no fat So I had enlive drinks thru my Peg. Otherwise I would have had an NG tube (thru the nose) Not pleasant when youve already been messed about with in that area!
I had RT to both sides of my neck so the cooking inside was done good and proper. Again the PEG got me thru alot.
Discuss with your team your treatment and see what they suggest. I found that it was painful for a few days in the tummy area,and it did get me down a bit, but for me knowing what I know now it was the best course for me. I tried to put on weight pst surgery and I managed 66 kilo.
Now I am 51kilo and a us size 0 not good! I think I am putting weight on and then I go and have an active week and off it comes again!
Anyway I am fit and healthy now just skinnier!
Looking forward to a great summer without too many appointments!
Keep smiling
Anne

Hi Alan

And now the good news - it's NOT the end of the world, life goes on (with some mild adjustments). Of course you have to go through the treatment and the "misery" it entails but (at least in my case) 18 months down the road and it's just a bad memory and things are now looking good for future.

The people frequenting this site will help you with any advice and support that you need - feel free to gripe as well - I think we've all been there

Good luck - Pete

This message has been edited. Last edited by: Phinsing,

Hi Alan,
My name is Ananth and I have been on peg feed for seven years now. As you must have read the links Dr. Joshi gave you, you must be feeling quite upto date with its functioning. I for one will be on peg feed as long as I live as myfood passage has closed down completely and its to late to go in for any more surgeries etc. as I would rather spend the time doing all the things I want to rather then spend my days in the hospital. Pegs are not necessarily permanent and the doctors use these to keep you nourished till such time you are able to eat and drink orally. In other cases like mine - they are my life line and once again as you read - they are not very problematic as such unless at times they just pop out without notice and without you feeling a thing ( its very rare that they do this - its happened only twice in my seven years ). Even if it does pop out its not so serious as I learnt- just hold a towel against the part of insertion and see where you can get a replacement tube and get to a good gastro and it gets inserted before you can even blink. I lead a very normal life even though I cannot eat or drink orally as the peg provides me with all the nourishment I require as the food I "eat" through my peg contains a lot of protiens, vitamins etc. and keeps me fit.
I would be most happy to answer any of your questions should you feel the requirement to ask. Meanwhile - hoping you are feeling much better and strong. There is no reason to be scared or worried . Let things take its course and as I keep saying life is ment to be lived and lived kingsize. Dont mope over what could have been - but concentrate on the good things you are going to do and have. And as far as being in the right place - there is no better then rdoc. and Dr. Joshi.Everyone here is so supportive that they forget their own problems to care for anyone who needs their shoulder to lean on. Each person here is an angel in his or own right.

Take care,
Ananth
______________________________________________

quote:

Originally posted by Alan Wilkinson:
Hi guys, I have only yesterday been diagnosed with tonsil cancer and had not even heard of it before. I am very scared at the moment and a bit down but have been so impressed with this site and everyones helpful and supportive comments and tips etc. I have been reading some of the discussions and I don't know if I feel better or worse though. I just did not realise what seems to be involved and the traumas to go through but at the same time it seems reassuring that all of the various side effects of the rad / chemo have various tips to ease their effects and everyone seems to be doing so well despite obviously a very difficult period.

I am just about to start my c & r and now know what to expect. Would you recommend to put as much weight on as possible before treatment and when can you expect to perhaps begin to eat etc and weight gain. I know everyone must be different but any tips and advice would be most welcomed? Also what is a peg and is this good or bad? - there is so much to take in. Really good to talk to you all. - Alan

Hi Alan, As everyone on here knows a very hard time for you.
I like many did not have time to gain weight before the operation and went from 11st to 8st.
The peg is I belive useful as noway could I have eaten anyway . The Radiotherapy was horendous and my face and mouth was swollen for a very long time and it was a blessing I did not have to try and eat.
I wish you a very speedy recovery and will be watching out for further posts from you on your progress.


\\paul

Hello Alan

Welcome to the club, so exclusive that no one wants to join! Sorry to hear your news. Will you be treated at Christies? My husband has just finished his first chemo and he is so well I can't believe it. He looks better now than he has for years. He has had arthritus in his hand for the last two years and that has gone as well! The Dr said chemo cures many things.
The lumps in his neck have visibly shrunk and he can now move he tongue from side to side. We were told by his Consultant in Crewe that he would have to have a peg fitted, (you feed through a tube into your stomach) but they have said at Christies that it wont be necessary, and if you read through the stories on here you will see that not everyone has one fitted, some do and dont use them. They say if absolutely necessary he will be fed through a nose tube. We are only part way through the first half of the game as my husband puts it, so obviously dont have the experience of lots of others on this site. It would seem we are looking at feeding through a pipe during the RT.

My husband has stage IV tumour, in his tonsils, tongue throat and lymph nodes.

Do let us know how you get on.

Good luck

Angie