2 weeks of treatment done

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My husband has completed week 2 of 6 week program of treatment for hpv 16 positive tongue cancer. First week was chemo and radiotherapy and he was pretty wiped out last weekend. He is slightly better this weekend although very tired. He is starting to notice swallowing is becoming more painful but is keen to try and keep managing diet etc for as long as possible.  He does have a peg tube fitted but does not particularly want to use it. I know the time will come when it will be invaluable. Today he's developed an ulcer in his mouth just wondered if any of forum users have and advice as to how to try and prevent them. He is rigorous with oral hygiene and uses sodium bicarb mouth was 4 day. Is this just an inevitable side effect. Dreading the next 4 weeks and what lies ahead. .

  • Today he's developed an ulcer in his mouth just wondered if any of forum users have and advice as to how to try and prevent them

    Hi. There’s no preventing them and they will get worse as treatment progresses. Plenty of proper analgesia is key. Difflam is quite good in the earlier stages. I used Caphosol mouthwash to protect the mucous membrane of my mouth and Gelclair to help soothe. 
    When his mouth gets really painful swishing soluble aspirin ( and spitting out) does give some relief. But there comes a time when only morphine will do. 

    Dreading the next 4 weeks and what lies ahead. .

    It will be a challenge but he will get through. Two weeks after treatment end is the worst as the radiotherapy dose mounts up. 
    Make sure his radiographers know how he feels so that they can organise proper pain relief. 
    I found there was little point in fighting to eat. I used my NG tube from week four for eight weeks. 
    Well done for him getting this far.

    Big hug from all 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

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  • Is this just an inevitable side effect.

    Not necessarily for some patients who have access to photobiomodulation. Ask if his centre provides it. Its in its early days but quite a few patients report that their mouth and throat are less sore than others who don’t get it. 

    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
  • Hi Brisbane

    Some do miss the worst of the side effects of RadioT....Pain?  Oramorph and Difflam certainly helped me....make sure you have enough to cover weekends.

    Hated my PEG tube but it turned out to be a life saver.

    Peter

  • I can definitely vouch for PBM..  If you have access to it, use it.. 

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • I had PBM... obviously, I can't be sure what it may have been like had I not had it, but I managed to get through without mouth sores or ulcers. I used Caphosol multiple times a day and also used Difflam throughout (especially before attempting to eat) to protect me as much as possible. I had a PEG but I was lucky and maintained eating throughout (though did go down to soups and shakes). It is a brutal treatment but we don't all get every one of the side effects... 

  • Hi and welcome from me.  We all react differently to the treatment, even when it appears we are on similar treatment plans.  That is why this group is so good with a diverse range of experiences to draw on.

    As an example I suffered badly from ulcers, but had no nausea during my RT/chemo.  A friend one week behind me had the exact opposite from the same treatment - nausea but not ulcers!

    Like your husband I kept up my oral hygiene using salt and bicarb.  That kept things like thrush at bay but did not stop the ulcers which are radiation related.  It is important to keep the mouth clean to stop those ulcers getting infected.

    Peter
    See my profile for more details of my convoluted journey
  • Hi Brisbane

    This can be very painful. Don't shy away from using the peg as the more calories & strength he has the better, quicker & easier his fighting & recovery will be.

    Both be strong, you can do this xx

  • Thank you so much. Just need to keep telling myself this 

  • if mouth/gums are getting sore, use a baby toothbrush and Oranurse toothpaste... it will be gentle, but you can still do a thorough job.. if you're beginning to find eating/appetite a struggle, ask for a pump, and feed overnight.. DON'T leave it until the last minute, because nine times out of ten the proverbial will hit the fan overnight.. and usually over a weekend.. 

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • oh, and if you've started co-codamol/morphine, make sure you take the laxitives.. definitely DO NOT leave it until it's too late.. if you can, you want to be one step ahead for as long as possible..

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive..