Hi.  My mum had 5 sessions of radiotherapy to her cheeks in April.  It took an awfully long time for the pain to stop and I would say that mum is only just getting her taste buds back.  It was a horrid time and mum ended up loosing over 3 stone in the 2-3 months it took to recuperate.  At one point it was too painful to drink water, but she found she could manage milk.  I wish you the very best of luck.

I am 6 weeks post Chemoradiotherapy (35 sessions) for Oropharyngeal cancer. I still have a really sore throat and the tumour feels if it's still present seeing the oncologist on Monday for check up also still can't taste anything sweet!

Hi, did you catch up with your Oncologist jamesa7194? If you're happy to share, it might help my husband. He's in a very similar situation and really not sure what's going on. Everything we read says 2-4 weeks but he's 8 weeks and in agony when he tries to eat. He has an ng tube to eat at the moment but we fear this may be rubbing and making things worse so we're going to talk to the Consultant about it. Any info gratefully received and hope you're feeling some improvement. Take care.

Hi - yes it's all been a bit of a rollercoaster!

my oncologist was concerned and called for a new MRI that showed swelling and an endoscopy which showed ulceration on the throat and tongue which was causing severe pain. My ENT Dr then called for an urgent pandenoscopy so he could take biopsies for analysis. The week for the results were sleepless as I worried the worse. The results thankfully were negative and contained no cancer cells! I am now on steroids & antibiotics to help the infection.

im not out the woods yet and my condition needs to improve during April or more biopsies will be required.

I feel much better physically- still have ear pain and will I suppose until I get rid of these bloody ulcers which get aggravated at every meal!!!!!!!!!!!!!!!!  But it's a step forward and I am so grateful to everyone involved in my care. Stay positive everyone! 

J

Hi - yes it's all been a bit of a rollercoaster!

my oncologist was concerned and called for a new MRI that showed swelling and an endoscopy which showed ulceration on the throat and tongue which was causing severe pain. My ENT Dr then called for an urgent pandenoscopy so he could take biopsies for analysis. The week for the results were sleepless as I worried the worse. The results thankfully were negative and contained no cancer cells! I am now on steroids & antibiotics to help the infection.

im not out the woods yet and my condition needs to improve during April or more biopsies will be required.

I feel much better physically- still have ear pain and will I suppose until I get rid of these bloody ulcers which get aggravated at every meal!!!!!!!!!!!!!!!!  But it's a step forward and I am so grateful to everyone involved in my care. Stay positive everyone! 

J

Hi

Thsnk you so much for your speedy reply. Very much appreciated :)

I have read your reply to my husband and he's definitely going to check with the Oncologist whether ulceration could be causing the pain. He has an appointment on Monday so that's brilliant timing! It's such a hard slog isn't it? I can't believe how much he's been through and it sounds like you're at a similar stage of recovery. His chemotherapy and radiotherapy ended on 12/2 and he seemed to be recovering pretty well until the dreaded 2 week post treatment mark. They'd warned him about that but it's been relentless!

Take care J and thank you so much for sharing your experience. It's helped enormously! X

No one warns you how hard it gets those 6-8 weeks after the treatment I mine ended on 8/1/21 & I'm still in pain although that's my only gripe - I'm physically & mentally much better.

your husband may have an infection like me, the radiotherapy side effects are numerous and I think I've had them all - stay positive things will get better, it's just going to take tine and unfortunately there appear to be no quick fixes. as far as eating goes I can now eat pretty much anything as long as I take painkillers before a meal and accompany what I'm eating with lots of water & extra sauce. All my tastebuds are back now only some sweet things taste unsweetened like unfortunately chocolate!!!!

good luck 

James 
 

James, thank you so much! I know everyone's different but you have helped us to keep thinking positively. I hope it is infection Chris can get under control and start feeling like things are progressing more. We're definitely going to raise this with the Consultant as the symptoms do sound so similar.

Thanks again, from us both and we wish you all the best going forward. Take care and all the best :) x

Please feel free to stay in touch and use me as your benchmarker!

good luck to you both and hope Chris turns the corner soon!

all the best

Jx

Thanks James, I will and we appreciate that :) All the best.

Hi guys, hope you don't mind me tagging in here. 

I'm really sorry you are going through this

My husband completed his 20th Radiotherapy session on Friday, 10 more to go. He had a cancerous tonsil removed at the end of Jan with 47 lymph nodes taken (only one was found to be cancerous). Pain/discomfort level is quite high, every day his ability to eat is less and less. Yesterday he had to completely shave his beard as there are patches, think ZZ top pre op to a couple of inches to stubble pre Radiotherapy, now clean shaven. Not a biggy in the grand scheme of things but this and the lack of eating is really bringing him down. He's just announced he's going to have Ensure only from now on but he hasn't had any so far today, I really think he's going to try and avoid having them. I'm really worried.

Can you tell me did you both ed up with a feeding tube, and a what point? 

Cheers in advance.

Hi everyone

I'm 14weeks since my last radiotherapy session and it does get better! I have muscotosis which is painful but manageable. 
make sure you keep on top of pain relief as this will help you swallow, try and challenge yourself with eating - I liked custard & ready brek (still eating now) I also likes sloppy omelettes with cheese (easy to swallow!)

I used my feeding tube for about a month, during and after radiotherapy - it's a pain but dilute your fortisips with a little milk and they go through easy - I had 4 in the morning & 4 in the evening + pints of water throughout the day - it's really important to stay hydrated.

I think I started to turn the corner at around 9 weeks post treatment - life's not perfect but it's a million times better than it was and I feel human again. 

im now eating prettty much anything (as long as I accompany it with water) apart from dry things like crisps or nuts, cereal or chips! Also my tastebuds feel as if they have been reset - everything tastes concentrated - spicy, salty or sweet I'm currently avoiding - I'm a chef so it's going to take some getting used to!

also try and eat meals together I found myself isolating myself at dinner times try and eat something together I found routine really helpful.

Thank you so much James,

I've just read this to Steve (the hubster), I'm not going to lie he was a bit shocked at the length of time it took for you to start feeling better, but now he knows he's better prepared, and the info about the feeding tube helped because I'm sure he thought he would be able to get away with not needing it. Now I think he's reconsiling himself to the fact he will have one.

Thank you again, thats really helped us today.

Hope your recover continues to go well.

Best wishes 

Like your husband I have 10 more radio to go and just don't know how I'm going to deal with them. I haven't been given fortisips or any meal replacements and just liquid codeine in for pain. I'm at the hospital for my last chemo and 16 th radio tomorrow  and they are going to have to do something. This weekend I haven't eaten and hardly able to drink. I've bought back my chemo tablets too so that's a worry. 
 

on a positive note , my d in l had the same cancer as your husband.  Dreadful effects of treatment but a total recovery and cure 

in my innocence I thought I would be better as soon as the treatment finished