Update on No Primary

Hi Paul

Good luck with the treatment....not an easy gig....some tolerate the treatment better than others ....hope that you are one of the lucky ones.

I had 30 radiotherapy and 4 out of 6 planned chemo (cisplatin)....PEG feeding tube fitted....which was a lifesaver.

Take care and best of luck

Peter

Hi Paul. I have had a tonsillectomy and a neck dissection. On Monday I start 30 sessions of adjuvent RT - 'belts and braces' as they believe that they got all the nastiness out but they want to flatten anything that might be lingering. 

My neck dissection has healed well (6 weeks post op) and I feel great, but not looking forward to the next part of the treatment.

Good luck going forward Paul 

Hi Paul There’s  lots  in here who have gone through chemo And  radiotherapy any questions just ask. It’s not easy but if I can do it I was 61 and niw fast approaching 6 years. Take it one day at a time m take all medication as directed my advise if offered a peg take it. My trust didnt routinely offer pegs but u consented to a ng tube if needed and it was my lifesaver from end of week 3 .

Hazsl x

Paul

Have a look at my profile.  Similar to your situation at the start.  It may offer you some food for thought.  If I had my time again I would make the same decisions.

Hi Paul, all the best with your treatment, it's good that they are throwing everything at it, to make sure they get rid of it. We're all here for you, if you have any worries or questions, just ask.

Ray. 

Hi everyone, Many thanks for all your replies and words of encouragement  its much appreciated.

After a meeting today to discuss my treatment I have been advised that the plan is to target the radiotherapy on only the right side of my neck were the initial lump was avoiding the throat area and left side of neck.  I was also advised that due to this they do not think I will require a feeding tube. Still going through the process but perhaps hopefully a little less  intense than first thought although I'm under no illusion that it is going to be easy just perhaps a little more manageable. Or am I been overly optimistic?

Dental checks next week and treatment expected to commence in around 4 weeks.

Regards

Paul

Dimitris said:

  I was also advised that due to this they do not think I will require a feeding tube.

Hi Dimitris 

it’s good that your team thinks the side effects of the RT won’t give you too much pain. Do please get confirmation from them that they will speedily place an NG tube if you do run into trouble. Best foot forward. 

Hi Paul

I was not offered a RIG or an NG tube either as my radiotherapy was aimed at my jaw and not at my throat. Everyone is different but I found it was still a very difficult road  My mouth was full of ulcers making it very hard to eat. I was given some pink mouth deadening mouth wash that deadened my mouth for about 5 mins so I could try and eat some puree as fast as possible before the pain started again. It was not easy and I did end up  losing 10k.g. I wish that I had been offered an NG tube as I would definitely  have taken it. I was on a few pain killers, paracetamol, morphine and Fentanyl patches for a while On the plus side recovery from the radiotherapy for me was a lot quicker than for those who had it targeted at the back of their mouth and throat. I still  had the fatigue and pain but I did recover quite well about 3 months after treatment finished. It would seem it can be much longer for those who have it targeted at their throats as their swallow is affected whereas mine wasn't.

Take the pain killers regularly as this does help and if you do end up being offered an NG tube go for it.

Best wishes for your treatment.

Lyn

Hello Paul, just popping up to share my experience of chemo & RT which you can find on my profile. They had no problem finding my primary as it was advanced/T4. Treatment was tough but 18 months on I'm fine, touch wood. Wishing you the same luck!

Catriona