Side effects of radiotherapy

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Hello

My mum was diagnosed with tonsil cancer stage two in January and she had 34 radiotherapy and a little byt of chemotherapy. Her last radiotherapy was 1 st of May.She is at home now.She see regularly doctors and nurse is coming to her house.She is having a bad side effects of radiotherapy.She has tube in her stomach but she try to eat and she can't because of the pain.When she has one or two spoons of something she feels nausea.She still have no taste or smell.She also feel full all the time(she is 48 kg and her feed is 1750 calories).Doctor said that is all in her head and she should eat.Do anybody experience something like this before?

Her mouth are very dry and I know that this is normal but how long it will take to feel the dryness?She has diffrent products for rinsing her mouth but could someone recommend something worth to try please?

And  she sometime has spots in her mouth.Doctor said it is all side effects but does anybody experience something like this?

She feels like she is taking 5 steps forward and 4 steps backwards all the time.She is so mentally tired.Are all these symptoms normal?I know that everybody is diffrent but I promised her to ask people here who went through the same hell.

  • Hi joanna

    First, it’s not in her head at all. These side effects are normal. Some of us take a long time to start recovering. If it is painful eating she needs to stay on tube feeding and have her analgesia sorted out. She also has to have her doctors alter her antisickness medication to suit. 
    I had no appetite for months and made myself eat to get better. This is normal too. 
    The dry mouth will take a long time to improve and we are never as we were. Can she chew gum? This stimulates what function she has left. A pocket water spray to moisten her mouth is helpful and there is a big variety of saliva substitutes and mouthwashes for her to try. Get her to ask her nurses to find something for her. I don’t know what is available in Poland. 
    Spots in the mouth are what we get. They can be ulcers or blocked salivary ducts. They come and go 

    Recovery is backwards and forwards. That’s the nature of it I’m afraid but it’s normal. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • This esssy about recovering from cancer may help too. Have a read of it. 

    https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Thank you so much for all and I will read.How long it took you to start to eat or feel better?

  • My NG tube “fell out” at 6 weeks so I was forced to eat soft food and drink meal replacement drinks. But it was slowly slowly. I think I turned a bit of a corner at 12 weeks but I wasn’t well till a year 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Thank you.Did you feel nausea and no taste?

  • Hi Joanna I remember you from your early posts about yiur mum pleased she’s got through the treatment. Cat add much to what Dani has said it’s certainly nit in her head we all react differently see if she can uo take her feed as it’s nutrition that will help her I was in 2500 calories every day maybe she can try to sup the high calorie drinks. Has she been checked for oral thrush ? Ask her and if not she needs checking and flucozonole  prescribing. Mouth was I still use bio xtra and night time xyimelts from Amazon or other suppliers they aren’t on prescription. It was a good 6 month before food held any appeal I was drink8ngbyhe high calorie drinks from z3weeks I was dogmatic and made my self eat and drink. It was a good year before any pleasure but I’ve friends who are still peg fed 8monyh later there’s no right or wrong way 
    hugs Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Thank you so much to remember me and my mum.She finished her treatment 8 weeks ago.

    can I asked how much you weight when you was eating 2500 calories ?

    and can you write me down name of highly calories drinks please becuse I couldn't read?

  • Hi Joanna

    T2N1M0 HPV+ tonsil cancer Chemoradio (30+4) finished June 2024..PEG tube fed for approximately 14 weeks.

    Patients and carers are definitely mentally and physically drained by the treatment, I spent 12 days in hospital due to rapid weight loss....no appetite.... wanted food but couldn't get it down...very dry mouth....badly ulcerated throat and mouth....3 episodes of painful oral thrush....

    By last August things started to improve ...slowly at first....by September PEG was removed and I was eating solid food....my weight stabilised and I now have a healthy BMI....appetite and taste are still improving....going out for meals now....3 times a week.....eating slowly with plenty of liquids to wash food down.

    I still suffer from a dry mouth....but this is improving month by month....hydrate often...and use Biotene Gel at night

    It does feel like one step forward and two steps back at times....for most of us life does improve..... eventually.

    Take care and good luck

    Peter

  • and can you write me down name of highly calories drinks please becuse I couldn't read?

    Fortisips and Ensures

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Thank you.Did you feel nausea and no taste?

    Nausea yes, for a good few weeks. It’s why my tube fell out. I vomited it up. 
    Tase almost always disappears. It slowly improves over a year for a lot of us. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge