Update on hubbys treatment

Hello I’m 1 year post treatment for tonsil & lymph node hpv 16 positive. My hospital trust insists on a PEG before treatment can begin. So I had a bilateral tonsillectomy, then PEG fitted before 6 weeks of chemoradiation. My PEG was a lifesaver. I used it from week 4 of treatment for all meds, hydration & feeding as I could not swallow more than a few sips of water. I would highly recommend that he has the PEG prior to treatment so that it’s in place in case he needs it. 

Thank you Blod for your advice. 

Paula x

Hi Zooki

I agree with Blod. I had a PEG fitted prior to 7 weeks of radiotherapy and 2 lots of chemo for tonsil and lymph node HPV 16 cancer. It wasn't the nicest procedure having the PEG fitted by I certainly couldn't have managed without it from week 3 of treatment. I used it for nutrition, fluids and medicines as it was impossible for me to swallow anything.

I had a nasogastric (NG) tube towards the end of my treatment when eating got too difficult.  An NG tube goes up one nostril & down the throat into the stomach.  I had an overnight feed pump which worked well though I had to sleep sitting up. I don't know if that would be an option for your husband?  

Good luck

Catriona

Thank you Merry-go-round, 

Thank you Catriona, he had an NG tube after his op so that's a good option to have again x

Zooki said:

Stuart was not too keen on this idea and said he'd rather wait to see if he needs it!! Would you recommend him having it as its already there to use if

That is exactly the protocol at the South West Wales Cancer Centre. You get an NG tube when you need it. I had one for 8 weeks. It is little bother getting it fitted. It doesn’t look pretty but it dies the job. 

Thank you Dani for your reply

I had a NG feeding tube after surgery (tonsillectomy) but didn’t use it. A feeding tube during chemoradiation was never discussed, despite my having the standard dose. I did manage to get through the treatment without a tube but was reduced to ‘eating’ custard and Ready Brek mixed with Fortisips and lashings of double cream for about 4 weeks after treatment ended. It was hard going but doable, (maybe because the RT was only focused on my tonsil and not the back of my tongue? I’m not sure.) I have to say that without the MST, Difflam and the quite indispensable Oxetacaine I’m not sure I’d have managed. 

Hi Paula. My trust fits ng tubes if needed I had mine for week 3 of treatment for 6 weeks as others have said mine was a lifesaver. Certainly took the stress away from struggling when  I couldn’t even sip water all medication hydration snd feed went in via it. I credit that with me making a quick recovery. Flew to Spsin week 8 for hubby’s 60 th it was hard but without tube I wouldn’t have been able to. 
Hazel x