Hello all

Hi. My husband is the same age as you and also found a lump in his neck at the end of December which was diagnosed as HPV positive  with a primary tumour at base of his tongue. He too is very fit and doesn’t smoke or drink. He is on week one of 6 of chemoradiotherpy. You will find some fantastic advice and support on this forum. Today he is feeling a little grim from the Side effects of chemo yesterday but hoping for a better day tomorrow. He has a PEG feeding tube fitted on Friday.

wishing you all the very best for your treatment. I'm 53 too fit and healthy. Been told today I can go into a trial at Plymouth so I'm hoping I might avoid Radiotherampy/chemo for now and just do surgery as it's early stage.

Sending love and best wishes to your husband. 

the feeding tube is the bit I feel like I’ve  had kinda conflicting information on. From it’s a small chance I might need one towards the end of treatment to there’s and 80% chance I’ll need one for a few months. 

I’m able to swallow fine at the moment and would say it’s only a little uncomfortable rather than painful. 

I guess we’ll see how it goes. 

Interesting. I was offered and agreed to join research - however it’s just data collection, not any change to treatment. 

I think I’m stage T2 so not sure if that makes a difference 

All the best

Hi, sorry to see you here. Similar experience to you...I had 35 RT sessions and it does leave your throat in a bad state. I chose to have the feeding tube, quite honestly I dont know how I would have managed without it towards the end of the RT. I hope the treatment goes well for you. One piece of advice its to keep slathering on the cream to the affected parts of your neck, it makes a big difference. Good luck.

Hi Mistake Not 

welcome from me too. 
its a challenging treatment but doable. I’m already five years clear. Time has flown. 
Stay with us. Ask anything you want. There’s always somebody around to chat to. 

Thank you all for the kind words and warm welcome

question - I’ve been given a fairly extensive regime or jaw and swallowing exercises to follow pre and during treatment to try and mitigate trismus (spelling?) and give me best chance of keeping eating. Anyone had the same or had any issues with trismus (unable to open jaw/mouth properly)?

Mistake Not said:

Anyone had the same or had any issues with trismus (unable to open jaw/mouth properly)?

No despite feeding by tube for 8 weeks because I did those exercises religiously and still do five years later. 
Honestly they really do work. 

Hi I’m  iver 5.5 years post treatment. HPV is a good indicator for complete response so hold in to that. I travelled to Spain 8 weeks post treatment , so never say never. Ok insurance could be difficult for the states so soon after treatment has finished. 
welcome to the club none of us wanted to join. 
Hazel x

When you say cream are we talking moisturiser?