Mucositis - normal or should I worry?

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Hi All,

Week 6 - my mucositis is suddenly very bad.

Back of throat is white with red raw patches and a little bleeding. Tongue so swollen I can barely see it.

I am 100% tube fed, but swallowing, burping, hiccups are all agony. I keep waking up at night choking on the phlegm and then clearing my throat, which also really hurts.

I also feel fatigued and quite unwell (temp is normal).

I am managing pain with paracetomol and codeine, but I am wondering if this is normal (I've been freaking myself out googling how mucositis can lead to sepsis and hospitalisation).

I will be seeing my oncologist tomorrow.

Thanks for any support.

Steve

  • Good evening Steve, i have not heard of mucositis leading to sepsis unless you have an infection which normally smells, i used to bleed slightly when i was recovering, mainly because of the constant coughing, i think this i can be the problem with looking online for symptoms as it can be misleading. Please let your team know tomorrow about your concerns as they will know what they are looking at. Good luck for tomorrow. Take care.

                                                                            Chris  

    Its sometimes not easy but its worth it ! 

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  • HimSteve . Take a deep breath it’s normal well as normal as any of our side effects are. Get oncologist to check for oral thrush as well. I used to sip either Diet Coke or soda water just to help rinse my mouth out.    Gargle or swill mouth with soluble aspirin  rinse and spit. I also used a nebuliser up to 6  times a day and sometimes in the night, hospital gave me one. Our treatments brutal but it has an excellent success rate. See if you can have oramorph or m s t a long lasting opiate to ease your pain at your stage I was on 30 mg cocodomol and up to 40  mil oramorph every day. I was reliant on my ng tube for food water and medication. Remember once treatment finishes the following few weeks are a case of hunker down and let the treatment work. 
    good luck with tomorrow  like Chris I’ve not heard of mucosis causing sepsis Keep iff dr Google  

    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

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  • I am managing pain with paracetomol and codeine,

    Hi Steve. Well before your stage I was in morphine both long and short acting. The long acting stuff was a game changer and I could sleep through the night. 
    It is normal. You just haven’t got your analgesia right. 
    im sure they will sort it tomorrow 

    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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  • googling how mucositis can lead to sepsis and hospitalisation

    Yes only if you are severely immunocompromised which you won’t be.
    You’re tired because you’re getting radiation 

    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 all,

    Pain management now sorted (slow release morphine and top up). Mucus is still a real problem (even with Carbocisteine and a nebuliser). I haven't slept much for three nights.

    Quick question can the mucus be green and have an associated cough without it being an infection?

    I am feeling quite poorly, but then it is the start of week 7...

    Thanks

    Steve 

    Diagnosed Feb 2023 with base of tongue cancer, oropharyngeal squamous cell carcinoma (OPSCC), HPV positive, staging: T4aN2CM0

  • Quick question can the mucus be green and have an associated cough without it being an infection?

    I would mention this. An infection must be possible. 

    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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