Starting week 5 - pain advice

Hi all

Just looking for some further advice to manage mouth pain - general soreness and ulcers as well as swallowing.

Tomorrow I have my final chemotherapy and begin week 5 (my penultimate week) of radiotherapy.

Pain and ulcers have gradually been increasing over last couple of days. So far my team have given me the following

Oxectaine and antacid

Raspberry mucilage with aspirin

Tellodont

Paracetamol

Co-codamol (not currently taking)

Oramorph

I went from having a very dry mouth to the thick mucus practically over night (started last week) and because of that I’m finding the Oxectaine unmanageable- it just makes me heave & vomit, ditto the oramorph. When I do manage the oramorph (5ml) it doesn’t seem to do anything for the pain with swallowing and just makes me sleepy.

I can drink a soluble paracetamol but it takes a good 45 mins to go down. My CNS said to try steaming for the mucus and to increase tellodont but that doesn’t seem to be helping.

My throat is very sore from the acid of heaving / coughing up mucus - are there other things I can ask the team for when I go in tomorrow?  I’ve ordered a humidifier for the bedroom on Amazon. Anything else I could be doing but missing?

Thank you in advance for your help. 

  • Hi Becks I had a nebuliser which helped with mucus used it 6 times a day You can also steam over bowl of hot water with a towel over your head just be careful. Any reason why you’re not taking the Co-Codamol I was on 30 mg tablets Two tablets four times a day plus up to 40 mil of Oramorph spread out through the spread throughout the day maybe you need to check your pain medication with your nurses tomorrow. For ulcers which I had full length of my tongue I was prescribed gelclaur again as the nurses tomorrow. Do you have a feeding tube or a peg if so I will suggest putting your medication through that

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Thanks Hazel 

    Nebuliser now on order from Amazon - silly question but how many minutes do you use it for if using 6 times a day? I am going through so many tissues I can’t believe how much there is! 

    The Dr I spoke with last week suggested coming off co-codamol as they wanted to increase my oramorph but it just made me sleepy and sick and didn’t really help much with pain. 

    I will ask tomorrow about gelclair for ulcers and no I don’t have a PEG or tube. It was mentioned when I first received my diagnosis and then my Oncologist was ‘hopeful’ that I could get through treatment without one and it’s not been mentioned since. Although I have a weekly call with the Head & Neck CNS team it’s always someone different which I don’t think helps and then things change quite quickly. 

    thanks for all your help x

  • Hi never longer than 5 minutes i the nebuliser l only put plain boiled water or saline solution in ,I got mine from hospital. Yes copious amounts of tissues. Yes thought I could cope without feeding  tube  but mine was fitted start if week 4 n g tube if yiu can’t maintain sufficient hydration and nutrition please seek help.  Maybe go back in co codon speak to dr or nurses tomorrow yiu need reliable pain medication. 
    As for mucus I was even known to pull out with fingers gross but needs must. 
    Hope this helps. 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Hi becks. I would discuss your pain management in a little more detail if you can. The morphine doesn't take away the pain of swallowing much, I don't think anything does really well, but it does stop the continual background pain. I was on Oramorph and paracetamol each four times a day, taking one or the other every two hours. Building up a level of analgesia is what works best. When I was waking in the night to take more morphine I was given extended release MST which I took morning and night.

    I'll echo Gelclair and add Caphosol.

    Don't take cocodomol with paracetamol...willyou.

    I couldn't manage co codomaol either. It's strange as the body metabolises codeine to morphine which is the active ingredient...hey ho!

    I got into real trouble with pain in week four and it took a few days to titrate my pain relief properly and after that it was OK

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • PS Are you at the Royal Marsden?

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • You can get a nebuliser from Sainsbury's. For me it was a walk in the park until I hit week 4 and and my mouth got painful, week 5 the chemo hit me and I lost serious amounts of weight as I was throwing up and anti sickness pills had no effect. I had a problem with mucus for around 3 weeks and now i have a dry mouth. Sips of water is key during the mucus stage.

    Lee

    T4 N2 M0 left oropharyngeal SCC (grade 3, p16 positive)

  • Hi coming late to the thread…I would concur that a combination of the morphine and liquid paracetamol helped me somewhat….but I ended up sleeping on my side with a towel down on the pillow for the dribbling and mucous. I got a step up and put on slow release morphine to help during the night…that may help you x