Radiotherapy

Hi ducklings, 

Nothing much happens for two weeks or so then as the  mucous membranes of your mouth and throat get damaged you do get quite a bit of ulceration and pain which for me ramped up to around the end of four weeks then plateaued. By then I was on long acting morphine twice daily and oramorph alternated with paracetamol every tow hours through the day.

By week four I couldn't swallow anything so had a nasogastric tube placed.My analgesia was tweaked which made a huge difference.  I fed liquid food by pump overnight. My neck did get red and a little scaly but never actually broke out. I moisturised throughout with Cetraben and put aloe vera gel on in the car on the way home from RT.

I had treatment to both sides of my neck too but a reduced dose on one side. My saliva was replaced by thick mucous for a good few weeks. Steaming over hot water with a towel helped this and I must admit I had to spit a lot. This suddenly stopped at around 12 weeks. This was replaced by a pretty dry mouth which took a good year to improve. It's the only side effect I am left with. It's why I have to obsessively look after my teeth with fluoride varnishes every three months, high fluoride toothpaste and no snacking on sweet stuff.

The two weeks after treatment finished were the worst I think. The wrap around care suddenly came to a halt and I was utterly exhausted. I slept for most of those two weeks

By six weeks I was feeling a little better and at twelve I had turned a real corner. I wasn't happy with things till about six months.

Many of us follow a similar pattern

PS I do have a bog about my experience but I don't really go into too much graphic detail. One of our other members RadioactiveRaz has a much more detailed one so have a look at that too. Just click on her name here. There is a link in her profile. Note, though, that she had RT for a week longer than many and she has chemotherapy too which makes the effects of the radiation worse

Similarly@MarkEL has written a good profile 

Thank you so much for this information

Hi, Ducklings, Dani has about summed it all up, with her post. I would say if you are offered a feeding tube, a RIG or a PEG, I would have it, they will take any worry away from not eating during or after your treatment. I also used Aloe vera gel on my neck, after each RT session (only after not before, also ask for Flamazine if your neck gets bad towards the end of your treatment. It's only natural to be scared and anxious, we all were but got through it and so will you. We are all here for you when needed, so ask any questions you have, and always keep your team update on how things are, along the way.

Ray

Hu welcome from me Dani has given a great summary. As she said I had chemo as well. Sm now 6 years post treatment my neck burnt badly but once it healed I’m fine I wear factor  50 Duncan daily apart from that along with dry mouth I’m great. Blog might help 

it’s hard but take it one day at a time 

hugs Hazel 

Thank you for this. It is the unexpected I think and there is only so much reading I can do about it all

Thank you

Hi Ducklings

T2N1M0 tonsil cancer HPV16+ ChemoRadio finished June 2023

Most of us were anxious and scared

It is a tough treatment.... some do get off more lightly than others, side effects for me were oral ulceration, dry mouth, inability to eat for a few weeks, loss of taste and appetite, slight discoloration of skin in the neck area, oral thrush....radiotherapy teams will help you every step of the way....

Keep the forum updated on your progress....plenty of sound advice and support from others who have already gone through or are going through through CRT

Do you have a feeding tube in place?

Take care 

Peter

Thank you. I currently don’t have a feeding tube in place and my oncologist at the moment is hoping that I won’t need one in. 
Luckily I didn’t need one after my surgery either, however I am just going with an open mind regarding the feeding tube. 
I have been given loads of fortisips to take. I just don’t know how much weight loss to expect either

I lost a few kilos during treatment, not enough to affect the mask fitting during RT  treatment. I did enjoy a few extra of my favourite meals before RT, again not enough to affect the mask fitting...now have a healthy BMI....

Try to stay off Dr Google as it will only cause more anxiety...use NHS accredited sites...or forums.

Peter