Feeding tube and likely consequences of RT

I start my RT in under 4 weeks, 6 weeks so 30 sessions, and I'll be given 6 sessions of chemo so 1 a week

As I'm having RT to both tonsil sites they want me to have a feeding tube, which I'm dead against, in fact I hate the very thought of it.

How much pain am I likely to be in here, my appointment in oncology today was bleak, they basically said if I don't get enough protein treatment may stop, but from what I've heard the worst symptoms start after the 6 weeks of treatment.

I suppose the reality may be that I experience double the symptoms of others here, is that even manageable 

There must be a solution to this, I thought if I took regular pain killers then I'd be OK, 

  • It was my life saver I took it out 3 weeks into recovery which is easier to do with a n g tube as opposed to a peg.

    PEG/RIG removal is dead easy Hazel, my most recent one was taken out while I was sat in my front room on the sofa. Two minutes preparation and five seconds pulling it out, easy peasy and totally pain free.

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Same here Mike. I've had both and both were as easy as each other to remove. The relief of having something foreign removed is heaven! Stuck out tongue winking eye Hope you're dong ok Mike. x

  • Cheers Mike. Wasn’t too sure about that as I know 2 who have them in but their doctors are saying they must keep  them in until dr gives ok for them to be taken out . So I thought they needed medical intervention 

    Hope  you are keeping ok xxhugs Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Good to hear no probs on PEG removal. Hoping to get mine out soon as not needed since 1st June. 

    They wouldn't agree at last clinic as I had lost too much weight in previous 6 weeks, but that was when it was really hot & I was enjoying eating salad again and didn't fancy most other food. 

  • Thanks Dani x

    Its sometimes not easy but its worth it ! 

  • mine is just a Morphy Richards (cheap) facial sauna. It's years old but I just goggled and you can get something similar (purple face tube) for £30. It gets quite hot on your face so, a few times a day for a minute worked better for me.

    Piya10
  • Hi Mark, it's not me but my son who has had surgery for mouth and jaw cancer.  He starts his radiotherapy at the end of August.  He has one session of chemo, then 33 sessions of radiotherapy, with another session of Chemo about 3 weeks in.  He had a RIG fitted before he had his surgery.  He wasn't able to eat for the first 5 days after the surgery, so relied on the RIG for his food.  The RIG will stay in until he has finished all his treatment as he has been told he not be able to swallow when the treatment kicks in.  It's far better to have it in place as he has been told he needs to maintain a steady weight, and I'm sure it will be the same for you.  My son couldn't have a nasal tube due to the position of the tumour and although it's a bit uncomfortable, the RIG works fine.  Speak again to your consultant and also the Macmiillan nurses who will be able to reassure you.  Good luck, let us know how you get on.  Take care, Macfarlane 

  • Hi Mark

    My husband is exactly the same as u worst thing about the whole treatment for him was the PEG...he is a real foody so this news was devastating to him...I think he was convinced he would be able to eat or drink something...well 6 RT sessions and 1 chemo in today and he is struggling with his taste already and has lots interest in eating already...PEG is being fitted Monday and I know he will def need to use it...at least its there just in case...trust the team they know what there talking about...Good luck with everything 

  • Hi Mark, just wondering how you're getting on with your treatment, I was really unsure of getting the PEG too.  I'm currently on week 3 of chemo/radiotherapy  

  • Hi weejay, I'm actually OK, yes this is horrible, it's certainly the worst I've ever felt but with 2 days left I could be worst.

    I'm planning on detailing my 6 weeks at the weekend it might help someone out but regarding the feeding tube I've just about managed, I eat a bowl of porridge in the morning and a bowl of soup for supper, iv no appetite and I've lost a stone in weight.

    I'm on morphine and slow release morphine, water is horrible unless I put a small amount of co codamol in it.

    I've got 4 chemo mates, all have the peg fitted, one has been admitted with a peg infection, one with a chest infection and the other with constipation issues.

    I did alot of research on the peg, I hate the idea but from my research I'm lucky to get this far without it, I underestimated the loss of taste, thinking cardboard bland is fine get it down you, but the sensation and taste of most foods is disgusting beyond belief for me.

    Good luck your halfway there