PEG requirement

Hi. I had the same diagnosis as you. So I had bilateral tonsillectomy then PEG fitted prior to 6 weeks of chemoradiation. By week 3 I could only swallow sips of water. I started using my PEG at week 4 for all hydration, meds & feeding. I hooked up to a small pump for overnight feeding. You need a huge calorie intake for treatment & recovery. My PEG saved my life - I would definitely recommend having one. My hospital trust insist on a PEG before they will arrange treatment. 

Hi Andy, I had pretty much same diagnosis and treatment plan as yours (finished on 1 September). And also felt I could stand to lose 1.5-2 stone... However, as others have said, you really need to maintain weight and get calories, protein etc to get you through the treatment. I had the PEG inserted before treatment and really didn't want it. In the end, I didn't use it as managed to maintain my swallow during and post treatment though I did go down to liquid diet (soups, shakes and the Ensure drinks). Despite that experience, I'd recommend having the PEG. It's a minor inconvenience and might just save your life if you can't eat or drink at all. I did maintain my weight throughout treatment (maybe dropped a couple of kgs) but have lost some weight since which I think is inevitable for all of us. 

Hi Andy

i had exact same treatment as you apart my Chemo was a Friday . My trust don’t routinely fit a peg and so after loosing 2 stone I was admitted to hospital with only 3 RT left. I could not physically eat anything and it was only when I was admitted I realised how weak I was. If I had been given the option of Peg I would have taken it, I had great plans at start of treatment that I would drink the shakes and get some cals etc but by week six it was totally impossible . The body is a strange thing and you might be lucky but from reading this forum the majority of us need a peg or hospital stay , good luck with treatment 

Hi Andy I had a RIG which is similar to a PEG. After about 3 weeks of my treatment, I was 100% reliant on it, and was for approx 10 weeks. The way I look at it is, you might not need it, but it's better to have it and not need it, than to need it and not have it. All the best with your treatment.

Ray.   

Hi Andy. Welcome to our small group sorry you’ve found yourself here

My trust didn’t routinely fit pegs but instead offered ng tubes if yiu csnt maintain swallow. I had mine fitted end of week 3 it was my lifesaver. I had all liquids and feeds plus medication through it. Them week 3 of recovery I was able to maintain oral intake once again. By drinking the ensures. It’s a difficult one I would  advise you to have it fitted as you can’t imagine until it happens hiw one day you can drink water then the next you can’t. I was also very fit and no other illnesses ok I was 61 when diagnosed. 

hazel 

Hi Andy

I was similar to you with my feelings beforehand but as has been said on many replies: everyone experiences are very different however my specialist would not start treatment unless I had a peg fitted. It seems alien to start with but you soon get used to it.

I could not swallow at the worst parts & even injecting 4 bottles a day (1,600 cals) I still lost 3 stone which, like you, I could afford to lose but you will need all the energy, vitamins etc to fight this. There are no medals for heros so go with the advice of your specialists. Swallowing left me shaking & crying in pain & I am no wuss!

That said, I have not used the peg in 4 months (& finished my treatment March 23) & could really do with gone but this part of the treatment is not so structured (its no good for the sex life for a start - not a great look!)

Good luck for your treatment

Hi Andy

The truth is that with RT you should not lose weight.  The mask is made to fit you closely at a specific weight.  If you lose weight the mask allows your head to move and this means the radiation may not end up where it is supposed to be directed.  They can remake the mask, but it is a faff.  In reality we all probably lose some weight during treatment.

You will need far more than 1000 calories.  I am constantly starving at the early stage of my treatment and still losing a little weight despite still eating large quantities of normal foods - far more than I would normally have.

I had a PEG put in 2 weeks ago and have had no problems with it at all.  The process was simple, quick and painless.  I did not even take paracetamol post procedure.  I can easily forget I have it in at the moment.  It just needs routine cleaning each day which is not onerous.  Probably next week (week 3 of treatment) I will need to start using the PEG to supplement the calories I can swallow.

If the thought of a PEG is too much they can put and NG tube in through your nose.  However, for me the thought of that made it an easy choice to have a PEG!

Unlike most people in here I was never offered a PEG and managed without one, but it was hard going. By week 4 I was pretty much just eating Reddi Brek, custard and double cream washed down with fortisips and a 1200 calorie milk shake that I found on the internet. (Sadly I couldn’t taste any of it!)  It was pretty painful to swallow anything, but the combination of paracetamol, ibuprofen, MST and Oramorph taken 24/7 helped keep it under control. (By week 5 I’d actually gained weight and had to have my mask loosened as my face was dimpled like a golf ball when they took my mask off.)
I had the standard 67 Grays over 6 weeks but my RT was quite localised to one side of my neck (tonsil and lymph nodes) which may have made a difference? If I’d had bilateral treatment or base of tongue I’m sure I would’ve needed a PEG. Good luck with the treatment 

Hi Andy I had my peg fitted back in may 2023 and had a jaw surgery where I had fibula from my leg inserted when they took a tumour wrapped around my left side of jaw, I’m still using my peg as I’ve not been able to swallow very well since surgery back in may, I try but my taste and swallowing lumps isn’t easy everything tastes weird. The peg is my life saver I like st almost three stone and still not gaining weight, so it’s been in for 7 months now, the surgeon wants it to stay in as I’ve two more reconstructive dentistry operations  etc to be done, I’d definitely go for it once it’s in you don’t really notice it until meal times 

Good evening AndyH, if you have been offered a PEG then i would suggest you consider taking up the offer as nobody knows how you will react to the treatment, hopefully, you will not need to use it but if you do you will be grateful to have one fitted although you can always have an NG tube fitted later. Its not essential to have one but it sure does come in handy plus they will,in most cases not fit one halfway through your treatment. Good luck with your treatment, take care.

                                                                                  Chris