Radiotherapy

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Hi everyone 

so I have had 3 radiotherapy appts so far, having 30. I have started with side effects already I think. I didn’t expect them yet and anxious how bad it’s going to get. 
having treatment on my neck and palate. 
my neck (prev dissection 12w ago) and tongue are burning, I’m tired and feel a bit sick. I’ve got some cream for my neck/fave flaminal Rd. I’m dry as a bone! 
Anyone get any tips to help with the neck? I’m chewing gum, drinking plenty and using gentle toothpaste.

thanks 

Elaine x

  • Hi Elaine. We all react differently , if yiure chewing gum please make sure it’s sugar free as lack of saliva plays havoc with teeth. Keep drinking water as long as you can try gargles with salt water 9 mg to one litre lukewarm water plus 1/2 teaspoon of baking powder. . I had a humidifier in the bedroom at night which helped. You’ll need a soft toothbrush and if you can’t manage duraphat toothpaste you can try oranurse. Some trusts will prescribe caphosol you can ask. Unfortunately dry mouth is the common side effect that we all tend to get. Just listen to your body don’t over do anything.plus make sure you have  pain killers to hand I managed to get to end if week 2 before I needed co codomol but it can happen at anytime.
    Hazel

    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/

  • Hi Elaine. Do you mean Flamigel RT ? That’s the standard treatment for early RT burns. I used Aloe vera gel which I applied in the car on the way home and cetraben at home to keep the skin supple. I did burn but my skin didn’t break. A week after treatment ended my neck was fine. 
    As for your dry mouth do let your RT team know. It sounds as if you should be using some artificial saliva and maybe some Gelclair. You can get that from your hospital. 
    Another  thing you can do is to email Chris Curtis from the Swallows Head and Neck Cancer Charity. They are supplying treatment support boxes free and there are all sorts of goodies in them. 
    Best wishes 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

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  • Hi Hazel

    thanks! 
    I haven’t got any special toothpaste from the team. They just said to get mild toothpaste so I’ve got some oralieve. Thankfully I’m still managing my electric toothbrush so perhaps I’m not that bad yet. 
    I’ll try the mouthwash, thanks. I suppose it doesn’t help having my fan on full blast at night, can’t sleep without it!! 
    elaine 

  • Hi Elaine the fan sadly will dry you along  with tea and coffee if you can still drink them .I personally couldn’t use an electric toothbrush for over 2 years. The toothpaste is available in prescription it was  the first thing inwas given As Dani says  gelclair is good again that’s a prescription oral rinse, especially good for ulcers and sore mouth.It may be worth buying a humidifier mine was a cool mist one from Amazon.

    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/

  • Hi dani

    yes flamigel rt. did you use your other creams with flamigel? I’ve been using bio oil but stopped as didn’t want to fry! Wasn’t sure whether to mix two at a time.  I’m meant yo be getting some saliva tomorrow hopefully. 
    thanks for the tip about swallows. Do you have his contact details or should I just send an email to the charity? 
    Elaine

  • Ok Hazel 

    thanks I’ll have a look at that. 

    elaine 

  • yes flamigel rt. did you use your other creams with flamigel? I’ve been using bio oil but stopped as didn’t want to fry! Wasn’t sure whether to mix two at a time.  I’m meant yo be getting some saliva tomorrow hopefully. 
    thanks for the tip about swallows. Do you have his contact details or should I just send an email to the charity? 

    Hi Elaine Chris is at Chris@theswallows.org.uk

    He's sending some out now 

    I didn't need flamigel. I just used Aloe vera which was recommended to my by a breast cancer CNS. I think ladies who get RT for that can suffer awful burns.

    Not sure about bio oil. Run it past your radiographers. You must not put ANYTHING on before your treatment.

    Keep in touch

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Thanks Dani

    Oh I see.
    Yeah I’ve stopped the bio oil on my neck and just using the cream they’ve given me. 

    Elaine 

  • Hi Elaine

    Any side effects let your team know immediately so they can prescribe something and advise. If you're feeling nauseous they can prescribe for that too.

    Linda x

  • Thanks Linda, I’ve took some ondansatron, had some left from my surgery. It’s the horrid metallic burn in the mouth that’s making me feel sick. Tried difflam but found that made it worse so I’ll avoid that for now. It’s it normal to get pins and needles in your neck too? 

    Elaine x

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