Hello All,
I have had a radical neck dissection just before Christmas and will start Chemo and Rads 15/2/10. I have had my mask fitted and have had a PEG fitted. I think the worst treatment so far is the PEG and although its been fitted for two weeks now I still cant ge used to it. The biopsy results from my neck dissection show that the cancer was localised to the left side and radiotherapy will only be to the one side.
My question is yesterday whilst discussing the PEG the nurse said it would become my friend, but then started talking about me keeping up my swallowing during the treatment but then what really struck me, talked about how different people react to the treatment and if necessary I would be supplied with a machine at home that would feed me over night. I have looked on this site and some have coped with drinking, some have used their PEGs and would appreciate any advice any fellow forum posters can offer?
Thanks

I had Base of the Tongue Cancer (Stage III) and right before they started my treatments they gave me a Peg tube. I had no problem with the Chemo, however, due to the aggressive radiation I received, I was unable to eat nor even swallow my own saliva. My Peg tube did indeed become my best friend. Thanks to the tube I am still alive and thus far, Cancer free.

I would drink 6 cans a day every four hours. I had problems sleeping at night because I would automatically wake up to be fed. Just when I was looking into the machine you mentioned, my nutritionist told me to drink 2 cans at my last feeding. It worked for me, I was able to sleep through the night without any machines.

I've had my tube now for a year but I am currently undergoing Dilations to my esophagus. I was able to eat real food (applesauce) for the very first time a couple of weeks ago. It was an exciting day for me.

I'm a hoping to remove the tube in a few months. The good thing about the tube is that I was never hungry, didn't have to cook and my weight was always the same. At first, I would hardly leave the house, only for doctors appointments. Now I am so used to it, I go everywhere. When feeding time comes around, I just look for a bathroom and feed. Reminds me of the times I used to breastfeed my kids every 4 hours.

Hello gd

There is much advice in discussions on PEG problems and PEGs. You can also search for previous discussions on PEG feeding using the Find button to look up the keyword 'PEG'.

Best wishes
Vinod

halfway through treatment my throat closed down couldent swallow anything, in hospital they peg fed me with machine.but i used needle by choise when i came home at one stage i was told i would never eat normally again but i am eating almost normally now peg was removed just before christmas 16 months i had it for i never felt it was my friend but it did keep me alive and never stoped me from going any where. worst for me was thati had to spit out all the time.

Hi gd
I had the same experience as you. I think after having a long op with the neck dissection you ger advised that the PEG is of no consequence. I found it uncomfortable for the first couple of days. I was told it was because I was so fit and my stomach muscles were reacting!
However, it did become my friend as eating became so difficult after about 10 days of r/t and fisrt session of chemo. I still tried to eat or at least swallow water but it was difficult.
My advice is to do loads of swallowing exercises beforew r/t (your speech therapist should help you)so that you have a good start. Also make sure you keep your jaw moving as it will cease up and make eating difficult after treatment(again speech therapist should give you advice)I carried on playing tennis and golf (not very well!)but I wasn't going to let it get in the way of life. You won't notice at all-unless youn wear tight trousers!
Keep smiling!
Anne

thank you all for your replies and I have taken something out of all of them. The actual PEG site is a lot more settled today after putting Manuka honey around it each night before bed, and apart from the flushing and cleaning and turning I do my best to ignore it. I look forward to the day that it can be removed and it can close this chapter, and hopefully look back like you all have.

hi gd
such good advice about the swallowing as i gave up due to my sore mouth and throat and just relied on my peg for feed and water and eventually i lost the ability to swallow for a while and everytime i tried to sip water i choked so i saw a speech therapist for a while until i learnt how to swallow.as for the peg,i have had mine for nearly 3 years now and it's marvelous,hides under the clothes nicely too so no-one sees it.i was quite sore to start with and thought i will never get on with it but it is my best friend too.because of trouble eating you can lose a heck of a lot of weight and that is not good as you need to be in the best condition to fight the monster.it's true flushing it and putting the feed on is so easy in the end i can even do it while virtually asleep and often am!my aim now is to get rid of the peg but it will take a bit longer as i still don't eat enough and i always joke that without the peg i would have lost so much weight i would have vanished into thin air.good luck with everything.love shirl xxx

Thanks again for the replies, I was having problems after surgery with swallowing liquids like water and tea and spoke to the Macmillan nurse about it and she suggested I may need to talk to the speech therapist about it. However later I was advised that I wouldnt be able to see the speech therapist until after radiotherapy.If anyone has any swallowing excercises that i could do please let me know. An update on my peg today is that most of the redness has gone but around the site it seems to be quiet crusty. I have cleaned it but I think today its not a constant sore it seems to be sore when it catches.
Also im not really sure what to do with it under clothes? do others tape it to your skin or do you just let it dangle or even just tuck it into clothes?.
I was visited in hospital by the nurse but at the time I was not at all well and she just gave me enough information to me let me go home in between holding the grey container whilst I was being sick. I was at the hospital again last week and it was pointed out the peg site was a bit red but that it would clear up.
With all I have to go through in the next few weeks I feel a bit guilty bleating on about this, I suppose by reading previous posts on this site I was prepared for the surgery etc but didnt really think about this too much.

Refeeding syndrome – awareness, prevention and management
Hisham Mehanna1, Paul C Nankivell1, Jamil Moledina and Jane
Head & Neck Oncology 2009, 1:4

quote:

Refeeding syndrome is an important, yet commonly overlooked condition affecting patients. It occurs when feeding is commenced after a period of starvation. Head and neck cancer patients are at particular risk owing to prolonged periods of poor nutritional intake. This may be from general effects such as cancer anorexia or from more specific problems of dysphagia associated with this group of patients. Awareness of the condition is crucial in identifying patients at risk and taking measures to prevent its occurrence.

Refeeding syndrome is an important condition and one that is often diagnosed late in patients at risk. It is particularly relevant to the patients under the care of head and neck surgeons. The key to better patient care in this area is prevention by increased clinician awareness and involvement of specialist dietetic support early on. If patients are diagnosed or suspected then there are now guidelines in place to help with management, however, it must be stressed that many of the recommendations are not based on high quality evidence and this must be highlighted as an area that needs future research time dedicated to it.

The electronic version of this article is the complete one and can be found online at: Refeeding syndrome – awareness, prevention and management

gd,

I've had a peg in for over a year now. The first peg I had had was rather long so I would tape it to my stomach or bring it up and tuck it inside my bra. This peg was later replaced with a much shorter one (balloon-type). It is so short that I don't bother taping it, I just let it hang or tuck it inside my pants if they are not too tight.

Hi gd
My husband had two PEGS and like Elina's, one was relatively short and just lay against his tum but due to the length of the second one (and the embarassment caused if it wasn't contained ~ it was a bit rude!), Trevor wore a lanyard, you know the 'necklaces' that you see ID cards attached to, and just hooked the tube through that. It was well out of the way and unobtrusive.
I figure, what to do with it/how to 'wear' a PEG is the least of the worries you people have to deal with. You'll be fine.
Keep smiling
Deborah

Thank you again for taking the time to reply, I appreciate like Deborah says this is the least of my worries, I have always been the same I can cope with the big things its the relatively minor things I struggle with. I know just what you mean when Deborah said it would fall out from under her husbands clothes. When mine was first put in and kept falling out from under my top it reminded me of the lady GaGa photo that was all over you tube!!! I tape it up a little now but never thought of tucking it into my bra so will try that when I next venture out.
Love to all Gill

Had my peg for many months and no problems really.
But I found it used to blocked which was concering.
Eventually I found the cure for the blockages using coke that clear the tube.

Paul

My peg has never blocked but it's good to know that Coke will do the trick if it does. Thank you, Paul!

My Peg was rude too! I got the nurse to shorten it and then it was less dangly and easier to handle!
Anne
Keep Smiling!