PEG requirement

Hi Andy

I am 3 months out of treatment and had pretty much what you’ve got planned. I had my PEG taken out yesterday. I couldn’t have coped without it - I’ve list 3 stone - which is ok I had it to lose. But I needed liquid food through the PEG to keep my energy levels up. I couldn’t swallow - even water after 3 weeks - so without the PEG I would have been in trouble. 
Everyone is different but I’d recommend a PEG - it takes the pressure off when things get difficult.

Good luck with the treatment - rest up and be kind to yourself and take all the help that’s offered to you. 
Rachel 

Hi Rachel,

Thanks for the reply. To hear from people who have been through it is invaluable.

I hope your recovery goes really well. 

Hi Andy

T2N1M0 tonsil cancer.....diagnosed Feb 2023...finished Chemoradiotherapy June2023

I had PEG inserted before start of treatment...IMO it was a lifesaver...68 at the time...14.5 stone....lost 2.5 stone post ChemoRadio....ended up in Ward 32 at Ninewells hospital Dundee to stabilize weight....PEG removed in Sept....Now eating well...weight is a healthy 12.5 stone.

I had been trying for years to lose a couple of stone....Chemo Radio did the job in three weeks.

Best of luck 

Peter

Hi Peter,

Thanks for the info. A lot of similarities between the two cases. Great to hear that you're now at a healthy weight and eating well. 

How is your taste and saliva? as I've been told that may be a side effect after the treatment. 

All the best,

Andy.   

Hi Andy

Taste was non existent for a few weeks after finishing CRT...better now....can enjoy choccy biscuits and a cuppa...mild Indian/Chinese, chippy food etc....medium spiced food is still a no no...a good tip I came across in this forum is Ginger ale...seems to seed the taste buds......Saliva...some days OK...other days not so good ...carry a bottle of water at all times.

Peter

Hi Andy. To answer your question the answer is yes. I didn’t have one but had to have an NG tube placed in week 4 because everything came crashing down and not only  could I not take my Fortisips I couldn’t take pain killers. Believe me you don’t want that because this treatment is absolute carp and pretty painful….. up the wall painful. 
Just my opinion.

I don’t really know how to advise you re weight loss. You need 3500 calories a day and around 30 g of protein to get through this and heal properly. You don’t just need calorific intake for maintenance, the radiotherapy demands much more. 
I think you might find it a real struggle 

I wasn’t given the choice over feeding tube. It was nasogastric when needed. To be honest I’d have the PEG and be done with. If you don’t need it then ok. 
you’ll get people replying to tell you they managed without so it’s your choice. 
Best wishes 

Thanks I’m just waiting my PET scan results - so fingers crossed. 
I’ve just read Peters reply - I too had to use the peg for medication - so really couldn’t have done without it. 
I’d heard of people who had done without one before I started but I’m so glad I had one put in before the treatment started - as couldn’t have faced the procedure (which is a bit uncomfortable whilst it settles in) once I was into radio and chemo. 

Hi Andy

Found this to be helpful

Taste Changes - Advice for head & neck cancer patients A4 (cht.nhs.uk)

Peter

Hi AndyH,

I would recommend you get a PEG.By week 3 of radiotherapy I couldn't even swallow a sip of water.You will need it for meds and feeds if that happens to you.It may make your life a hell of alot easier in the long run.

Best wishes with your treatment,

Turi

Unknown said:

Found this to be helpful

That’s a good piece. Thanks for posting.