Hello Everyone.
I Have not long known that I had Cancer,but what has happened in the last two months, has been a real strain, what with the Biopsy on the 24th December and then the Neck dissection,things have not been good.Now since I have started radiotherapy I cannot eat properly so am useing a PEG Tube, has anyone else had knowledge of tube feeding because my mouth and throat are sore and useing the peg makes me feel a little sick,

Hi Bob

sorry to have to welcome you here. There are lots of people here who have experience of the peg. I am sure you will get some replys soon. In the meantime you could try doing a search go to find and enter keyword peg. You have come to the right place for support. Take care

Mum
x

Bob try this link from Dr Vinod
http://rdoc.org.uk/eve/forums?a=tpc&s=29910697&f=265105...&r=74010059#74010059

Hello Bob,

Your nutritionalist/dietician should be able to correct or help you with your Peg feeding. It may be that you are just needing some adjustment to your amounts via the peg.

Do you have other support network that can help you?

Moira

Hi Bob, welcome, I didn't have a peg myself but I know there's a fair few on the forum that did. I'm sure you'll find lots of info. I know it's early days for you but you'll always find loads of support here. Hagg.

Hi there Grandabob,welcome to the Forum. As Hagg says there are a few friends here who have experience of the Peg tube. My experience is of looking after my Husbands tube feeding during & after his treatment for Tonsil cancer, a total of 6mths.
He also experienced nausea & sickness, mainly due to the amount of fluid he was expected to take in in 24hrs.He was given anti sickness drugs & the Dietician kept an eye on his intake.
Let the Radiologist know how you are feeling when you go in for treatment, they are part of the team caring for you & will let your Medical team know of any problems.
Dont be afraid to complain of pain, & take any Analgesia as prescribed so that the pain doesnt build up.
Are you feeding through a Pump over several hours, or taking it as a bolus through a sryinge?. Whichever method , dont forget to clear the Peg with 50mls of water before the feed, & also when the feed is complete. This stops the tube blocking.
& above all, dont get constipated! We found Movicol to be the best "Shifter" & is gentle.
All the very best, I hope you have someone to help you, there's a lot to cope with at this stage. Fran

Hello Bob I am sorry to hear of your situation - there are lots of people ready to offer help and support on here (as you are already finding!) So don't be afraid to ask away if you have any concerns - someone has always trod that path before you.

I have had peg tubes fitted on three occasions and no two have been the same! One was extremely tight and caused a lot of discomfort, the other two were much better. They really are a life-line, making sure you get all the calories, vitamins etc that you need to build up your strength, although it can be a bit of a palarva to use! As Fran says, you have to be very careful to flush through before and after a feed. If you have a word with your dietician he/she may be able to prescribe a different feed which doesn't make you feel so sick. It does take a while to adjust to feeding this way and I hope you will soon settle down to it and have no more sickly feelings.

Please keep us informed of how you are getting along and don't hesitate to ask any questions if you are worried about anything. We are all in this together!

Hi! Bob,
Welcome to the Forum, I was fitted with a PEG 2 weeks after my RT/Chemo Treatment started, at first it was a traurmatic feeeling and for a while rather depressing to have to sit at the dinner table watching every body in your family eating a nice hot meal and there you are filling up a 60mil syringe with something that looks like iced coffee and injecting it into your tube (not a pleasant thing to have to endure). BUT the end result is worth it as after the RT got into full swing there wasn't a chance of getting anything down my throat and my weight was falling dramaticly so I was glad of the PEG. The Dietician started me off with 7 cans of 2Cal-NH per day 2 for breakfast, 2 for Lunch, 2 for Dinner and 1 for supper. As time went by I started to experiment and cut my quota down and tried some SustagenDutch Chocalet, Iced Coffee and anything that would go down the tube so as to get my weight to level off as I was losing 1 to 2 klgs every couple of days and even though I was a very big boy that amount of loss was to much.
Though I could not get any food down my tube I was able to get about 30mils of liquid down my tube so was able to keep my mouth moist and also I was able to swallow my heart tablets (these were not available in liquid form) with a small amount of water.
5 weeks after my RT finished I was having trouble with my PEG and had a new one fitted (this was a bit daunting)as my first one had partially come out of my stomach and was blocked, the new one was fantastic as I could move it in and out of my stomach with about 25 mm of slackness and that made sure it was working properly. 10 weeks after my RT finished I tried some soap and some mousse, this was to be the beginning of my seperation from the need for my PEG, it was slow going but after 7 weeks of trying I had my PEG removed and have been eating solid foods ( I must admit the food has to be soft and in a sauce or I have to drink heaps whilst eating) since, you can look at my earlier post and see some of my tiops and comments in regards to this subject.
I hope this has helped you out and that you can look forward to a fairly normal life after RT/Chemo treatment, everybodies stories are different and some are easier and some unfortunately are worse BUT we are alive and looking forward to a long and meaningful life so take care, keep in touch and "Stay Strong"
LOVE Trev

Hi Bob
I have been on the peg for the last eight years now and also know its going to remain there for a long time ( well - till I am around!). Though I am okay in all aspects - but have both my food and air passage completely blocked due to some major problems I went through ( You can read the details of it on the main page - Ananth's story).

Having passed so many years on the same - I have become pretty much used to it and would find it starnge if I were able to eat normally again. I know the feeling of how it feels to feed through the peg as it was inserted just after my rad. and chemo got over due to a few fistulas that came around between the food and air passage which refused to heal. The sore throat will be there and the doctors had recommened some xylocaine spray to be used before I ate anything - so there would be no sensation of any pain while the food went through.Of course - I was also told that even though it would help me - I should not try and go straight for the other things then soft food. However, as I said things got pretty bad and am now on my third peg.

I know its a miserable feeling when you see other people eat and you think wow! lucky people!. Being honest - it crosses my mind too at times but then I realise its something thats not in my control - so why not make best use of what I have got - the peg!. Doctors and a lot of other people dealing with the nutrtion part recoommend things like Ensure etc. Some how I could not even bear the smell of all these powders and luckily both my wife and mum are very innovative people and drew up a chart of all that my body required to remain fit and also kept in mind the things I liked to eat. The same food made for the family was made for me - even to the extent - a cheese sandwhich or a slice of pizza - which would be put into the blender and mixed with milk and then put through the peg. In case I wanted a taste of what was going through the tube - I would take a few bites as I do now and just bin it after chewing it after I had taken in all the favors. I would just think of - that other people did the same but swallowed their food and I in turn though chewing on it - would have it though the peg making me into a lazy bum as it saved a lot of time in chewing and then swallowing.

Amazingly,my peggy - has done well and I have managed to keep my weight steady to a point where the doctors had to actually tell me to cut down on putting on more weight. Honestly speaking - it just takes getting used to and the faster one accepts its there - the easier it becomes to at least get all the nourishment your body needs. You can go ahead and buy some chocolates, puddings or anything you may want and puree it and into the peg...and if you feel you would like to taste it - go ahead - get the full flavor of it by chewing and swirling it in your mouth and then just bin it.

I have no clue as to what the doctors have decided in your case - if they have said the peg will be removed then dont really get worried as it will happen so and Godforbid - the peg is there to stay - you have so many options in front of you.

I hope I have made some sense as I am posting after some time now and hopefully am in full control of my senses - both humor and serious.

Take care and feel free to ask anything and thou shalt recieve your answer.

With tons of warm regards,
Ananth

Hi, Grandad Bob

Welcome to the forum - I did a double-take when I saw your name as my father is called Bob and he is a much-loved "Grandad Bob" to all the grandchildren in our family!!

Really sorry to hear about the problems you are having. I have had two major ops for mouth cancer but both times had the nasal-gastric tube rather than a PEG. I did feel quite sick the first time in particular but the second time, they put the feed through more slowly and it wasn't quite so bad. I was fortunate in that I managed to keep eating (after a fashion) during the radiotherapy. You definitely should mention it to the dietician though. Hope you get it sorted out soon.

In the meantime, best wishes to you, Bob, hope you continue to improve and get stronger each day. It can seem like a long haul at times, I know, but things do get better in time.

Lots of love
Sue
xx

Hi Grandad,

I've not had one of those for many years so I'm being bold and dropping the Bob! If you are on here you are part of of big family anyway so get used to it. I'm sure there are many more than me me that would like to have a grandad again. If it turns out that you are a youngster and are just fibbing with the name, well hell, I've always fancied having a toyboy!!!

Right, to the subject. I've had a peg since (trying to remember) November 06. It's been good and bad and there is no point in telling any different.
When I first had it in place. I felt sick and had very bad indegestion. I was given anti sickness tablets and the feed volume reduced which sorted that.
I've also had some discomfort and infection which has also been sorted.
(Just for the record guys, when you gave me advice on it coming out and the bubble which was holding it in,I have found out since mine is not like that. Mine is held by a flange on the inside of the stomach wall. Thankfully I would never let a locum try to pull it out. Remember when I said I would probably thump whoever tried to do that, well just as well I refused,imagine the pain and the black eyes!)

Anyway Grandad, stick with it. Mine has kept me alive when I could not eat or drink. I'm still trying to get enough orally in to keep me going, I'm not there yet but I'm hoping it will be soon.

I have a litre and a half of Jevity Plus every night and everything I can get down orally. Thankfully I don't have a problem with liquid anymore (mines a Guinness ta!) and I now am able to get it in at 150 an hour without the anti sickness stuff. I still have Callogen but bolus it independant to the Jevity or it gives me severe heart burn and I burp and can taste the fat content! I still too have 3 x Cubitan shakes a day but can drink those.

I'm sure you will still get more replies than mine but if you have any questions ask away.
As Ananth so aptly called it, there are many of us who have or who have had "Peggys" you are not alone.

SusieR
[Who am I not to be brilliant, gorgeous, fabulous, talented?" Actually who are you not to be. Part of a speech by Nelson Mandella]

Hi!

for some odd reason even though it says I am still a user under PeggyPeg is refused to let me sign in....so yes I am the same person as posted in the useful websites section!

My blog is there for all PEG users no matter what the reason and whilst I do not have cancer I have 3 friends who do and also some good "blog" friends who do too.

I have a progreesive neuropathy for which there is no treatment and 7 other conditions. PEG feeding is part of my life and I know the ups and downs with it all from my own experiences and that of others whom I in contact with.

I would love it if you would like to join in on the blog and make it more of an "interactive" blog! Let me know the things which you think would be good to cover subject wise! Tell me your story and let me put it in a post if you would be so kind! If you would prefer to be anon then say so and I will paste it without your details. Comment moderation is in place so if you want to comment and not have it published with your name then say so at the START of your comments so I know!

The UK support network for enteral and IV feeding is also linked from the blog along with many other links too! The blog is not for one group of people but anybody along with family ,friends who may need to share or read about things and also some professionals are now starting to visit too!

With many thanks once again!

I know PEG feeding is v different for us all and so anything on the blog is in no way a substitute for medical help and advice!

Please pass the link on to anybody else who you think might be interested.

With best wishes and hope to get to know you all a bit better when you come over and chat to me on my blog too!

Thanks

Chris
www.mypeggypeg.blogspot.com