Tonsil cancer

Hello 

We’ve chatted already but I wanted to welcome you here. 
You can maintain oral intake with a peg in situ. 
I didn’t have one but somebody who did will likely be along soon 

Hi Amanda,I've had a peg for 3 years now as my surgery left me nil by mouth unfortunately, I was very unlucky. Most have better outcomes than I.

You will get used to it, keep it clean and it's no fuss usually. My fortisip drinks go in via a syringe but you can use a pump overnight alternatively. It keeps you alive a peg basically while swallowing is not possible or just too painful.

Yes you may need to lubricate your mouth,I've found Oralieve mouth gel the best thing and the various sprays useless. All the best,  Wayne.

Thank you

Thank you for your reply.did you have radiotherapy? 

Hi Amanda

T2N1M0 HPV16+ tonsil cancer chemoradio finished June 2023

I had a PEG feeding tube procedure in April 2023....removed late September 2023....it was a life saver...used it to aid my recovery when I could not eat solid/liquid food...PEG pump fed...mostly overnight.

Insertion procedure was relatively straightforward, little pain then an overnight stay in hospital...5-7 days of mild to moderate abdominal muscle pain well controlled by pain meds.

PEG needs plenty of care and attention, regular flushing and monitoring for possible site infections....

Peter

Thank you for your reply

How did they fit the peg?anesthetic? Overstay?

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/nutritional-support/enteral-nutrition

There us some useful info here. 

Passed down the throat to the stomach where an incision is made, PEG passed through and secured, I was sedated, fell asleep, felt nothing, kept in overnight for observation.

Hi Amanda

I had a PEG inserted a year ago.  Day surgery under sedation about 4 days before i started CRT  I went shopping about 2 hours after the PEG was inserted.  Unlike some others I never had a single problem with my PEG and was sort of sad when it was taken out in June after a clear PET scan. 

I learned how to use the PEG by syringe and pump really early on so I was ready for the day when I needed to use it in earnest.  Doing that was essential as the inability to eat will invariably hit at a weekend when help is lacking.  After about week 3 of treatment I had all my meds and hydration through the PEG.  I managed to eat right through to the final day of treatment, but the last week was a struggle - I was stubborn!!!  After that I went onto pump feeding for around a month before I started to introduce food orally.  Throughout I was able to take fortisips orally and that helped keep the swallow function going even if it was only one or 2 a day.

As to keeping on top of your mouth.  Every few hours I swilled out with a solution of salt and bicarb to keep my mouth clean.  I was also given a large bag of mouthwashes and gels to try out by my dietitian.  For me I found a mouthwash called Oral7 was really good, but it is not on prescription.  The prescription medications like salvize I found useless at that stage.  Now I use Biotine gel at night to help.