trouble eating and drinking after radiotherapy

I finished radiotherapy last week. The advice I have been given is that side effects will peak in about 2-3 weeks so that seems to tie in with your experience. I was advised about pain relief and told to call the hospital hotline if I need to. 

And to expect appointments  to discuss how I am coping with side effects in 2 weeks and then 6 weeks. 

I do feel tightening in the area that has been treated. Pain so far managed with paracetamol and codeine.  However I am anticipating this may get worse as scar tissue develops. 

Hi Rosiee,Thanks for the reply. I  was advised the same,but I haven't been able to control the pain. I'm now a good 5 weeks past finish date and I would have thought things would be getting better now,but no. I know that we all react differently of course and I'm glad you're managing,I wish I was. I don't actually feel any pain at the site,it is just when food or drink,as I am mostly surviving on a liquid diet,hits the spot where I had the RTX,it is cripplingly painful.  I wondered how long the pain took to go away as I'm really struggling with it atm. Not helped by constant nausea and inevitably, constipation..

It would be good to hear the experiences of a few who have this stage behind them.

Best wishes to you

Hi

i finished chemotherapy and radiotherapy 12 weeks ago. After my radiotherapy finished things got worse, I was having difficulty eating and drinking ,  I regularly took paracetamol which helped.   I carried on eating weetabix, soups, and fortisip drinks I felt so ill I thought I was never going to get better I am now eating more food still can’t eat bread, chicken and I never enjoy my food these days , but I am starting to eat more food and putting my weight back on.. the only problem I have now is pain in in my stomach and back but I am having my follow up CT scan in 2 weeks to see if the cancer has gone, I will then have the results the end of November.  The team seems to think it’s all inflammation in the stomach after treatment. 

Hi Janey  Thanks for that. I suppose that is where I am now,I feel so ill I can't see a way out and even morphine isn't helping much. I have pain in my back and abdomen too and have to force myself to swallow fortisip . I do try eating other stuff but it's such a battle.It's hopeful that you are now eating more even if you don't enjoy it. I have never been a foodie but I do miss enjoying food and having a good appetite.  I hope all your scans are clear and would love to know if eating gets easier,you are just a few weeks further on than me.

Very best wishes x

Hi,

I'm so sorry to hear your experiencing so much pain. My dad also had a terrible experience after radiotherapy, he thought that was worse than chemotherapy. We took alot of steps backwards after he finished his last treatment. He had burns come out on his back which we had to go to hot clinic so they could do some OBS. The nurses there told us, imagine how your back is now, your oesphagus is 1000 times worse as that's what it does. My dad was feeling burning in his chest and the pain in his back went to new heights. She did admit that they never give the true picture of how tough radiotherapy can be. 

They advised to take advanced gaviscon and that did help ease some symptoms, it's alot better than the normal stuff. 

My dad only ate custard and his shakes for about 3 weeks, he is slowly coming out the other side now and we are 4 weeks on from his last treatment. 

I can only imagine the discomfort and pain your in as I saw it with my own eyes with my dad. I did buy him a thermal vest with the heat pads inside and this seemed to help as the warmth was all over and not just in one place like a water bottle. 

Have you asked for slow release morphine tablets as well as the oral version? My dad takes both and this seems to help with the pain management now, we have seemed to have found the right strength. 

If you want to ask any questions please do. My mom (Angie) may also reply too with some information.

Wish you all the best and I do hope things improve for you.

Kayleigh. 

Thank you so much for this Kayleigh,I'm sorry for your Dad and for you having to watch him go through this.  I'm grateful for the advice,and will certainly try the advanced stuff as the ordinary strength isn't that helpful.

I've changed pain relief a few times and have just gone back to morphine as that's the only liquid I can take without it burning. I will have to get some slow release as well.

I agree that the rtx is worse than chemo,I wish I'd had more serious warnings what to expect,I live on my own and have got pretty desperate at times.

Does your Dad suffer from really bad and painful constipation too? I realise this is because I'm not eating much and hardly any fibre and because I'm not as I used to, exercising much,but it's another problem. Laxido and senna seems to be the best solution I've found so far,unless you have others?

Once again thanks for replying and my best wishes to your Dad and you and your Mum. It really helps to know I am not alone which I have felt these last few weeks x

I would highly recommend you trying to get some slow release morphine aswell as this can be taken twice daily, morning and bed usually. Doctors may start you on a low dose and then you will need to go back and forth until you reach the right dose for you. Liquid morphine should then be taken throughout the day to mange the pain. Our consultant said we shouldn't be sitting in so much pain, we should be asking for pain relief as that is what it is there for. My dad isn't taking as much liquid morphine now as he was when he finished radiotherapy, which is a good sign. However, pain is still there but he said it's manageable. Only yesterday he said he still feels sick and eating early in a morning is still a no go. 

I'm sorry to hear you live alone, have you got a support network around you?!

We were expecting to take some steps backwards as our consultant did say we would and would be a good few weeks before we saw an improvement, we just didn't expect how bad it was! The nurse did say that they don't give enough information regarding the side effects of radiotherapy. 

Radiotherapy continues to do its job and burns away cells for weeks after your last treatment- hence why the road to recovery seems like forever. We didn't know this until we went to the hot clinic. 

Yes my dad does suffer with bad constipation too which causes more discomfort and pain. I work in the health industry and I don't think senna is any good personally. Laxido and movicol is the best if you take the right dose. If none of these work then I would look into having a enema ( although these are not pleasant) but may help to ease discomfort quicker. 

Have you tried making yourself a smoothie with fruit? My mom makes these for my dad and this does help. 

Also try and eat ready meals such as a cottage pie or shepherd's pie. If you do like veg, cook some broccoli or cauliflower and smash it. 

I do wish you all the best and I hope you have got some support around you. 

Please do not feel like your alone, there is alot of people on here who can help. 

Don't be afraid to reach out and ask me as many questions as you want. I will try and answer and give as much advice as I can. 

Take care

Kayleigh x

Hi

I'm sorry to hear you are still suffering so much from the effects of radiotherapy. I had radical chemoradiation (no operation) in 2021 for a T2N0M0 tumour mid oesophagus, squamous cell carcinoma. I had 4 cisplatin chemo via IV, capecitabine chemo tablets twice a day for 12 weeks, and 25 radiotherapy which started on the same day as the 3rd cisplatin IV. I had a stomach feeding tube fitted before treatment started because the tumour was so large it had blocked my oesophagus completely, and I had to syringe Fortisip, water and medication through that. After the first cisplatin the tumour started shrinking and I was able to nibble on cheesy biscuits (they crumble easily). I was told that radiotherapy would make it harder to swallow again as it burns the oesophagus, and radiotherapy carries on working for 6 weeks after the final session. I was very lucky and only suffered pain for 2 weeks then it eased off. 

I can't remember the name of the medication, I'll look through my huge piles of cancer paperwork and see if I can find it, but my oncologist prescribed me a liquid medicine to take before eating, it numbs the throat. As it happens I didn't need it. Have you been given that? 

Unfortunately some painkillers cause constipation which isn't helpful. I had Laxido sachets during my treatment. Normally they'd say drinking lots of water helps constipation but that's not helpful when you're struggling to swallow. 

By the way, I'm 3 years clear, had a gastroscopy with dye yesterday (6 months check up) and everything is still good, no sign of cancer. I'm 57. 

Take care,

Amanda 

I wonder if the formulation you refer to is similar to the mix of antacid and oxetacaine (local anaesthetic)  I have been prescribed in anticipation of pain when eating?

The formulation I have is labelled Xantocaine at The Christy hospital.  There may be similar formulations at other hospitals? 

Yes that sounds right. I've looked in my medical file but can't find the name, but essentially yes that's it. I didn't need to use it so can't say how effective it is but hopefully it will help.