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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Sore mouth

Hi

I've recently experienced a sore mouth I think I have ulcers inside my mouth which makes eating quite painful. I've been given sodium chloride mouth wash, gelclair. Is there anything else anyone found particularly useful for treating this?

Many thanks

Comments

  • Hi Laulau1

    Sorry to hear you are experiencing a sore mouth and ulcers.

    I experienced a sore mouth and found ice lollies/ice cream helpful. Although it is yummy you can't eat all day. This also isn't really a treatment more of a way to sooth the soreness.

    I used the same as you throughout the first few months after my Stem Cell Transplant and i know how uncomfortable it can be.

    I would also mention it to your CNS or medical team again if what they have given you isn't quite doing the job.

    Mentioning it to your team might be helpful if there is a clinical cause for your sore mouth i.e. low blood levels.

    Other things that may help sooth your mouth could be yoghurt or milk shake. Avoid anything vinegary or salty that may iritate it.

    We do have a nurse specialist who can offer some advice also.

    I do hope it resolves or at least gets a manageable point.

    All the best,

    Michelle

    (Online Community Champion)

    Clare_AtAnthonyNolan
  • Hi Laulau,

    I can understand how you're feeling as I got a mouth infection too. Mine was earlier, at just three weeks after my transplant and it started the Friday that I was discharged home following my transplant. In my case it was a fungal infection and affected mainly my tongue and gums, My tongue looked like it had a white fungus all over it and was cracked and very sore.

    Like you I found it incredibly difficult to eat and could only tolerate liquids. Chewing was most definitely off the menu, particularly as I normally wear a partial denture and I was unable to tolerate wearing that.

    In my case I was readmitted to hospital the following monday and spent another week in hospital on a course of something like four different mouthwashes four times a day and various antibiotics. It was tough going but the treatment started to work quickly and my situation improved within a few days such that I was able to go home again and start eating more normally, though at that stage my appetite was still poor.

    Hopefully your infection is not so severe but like mine it will clear up quickly with appropriate treatment. Have you been prescribed anything in addition to the mouthwash, such as antibiotics? I guess it will depend on the type of infection and its severity as to how your medical team will treat it.

    In the early days after transplant as our immune system recovers our bodies are more susceptible to picking up infections that our immune system might normally be able to deal with quickly, so I guess they affect us more and need help from treatment and medication to overcome them. The important thing is to take note of any changes in your body and how you're feeliing and raise any concerns to your medical team so that they can assess it and treat as necessary.

    As Michelle has said it may be worth finding something that helps to sooth the soreness. One of the nurses in hospital made me nurtitional milk shakes mixed with vanilla ice cream which helped a little and also supplememnted what little eating I could do. Ice lollies and ice pops also helped too.

    I hope the mouthwash does the job and the soreness goes away quickly and please let us know how you get on and whether you find anything that works for you.

    All the best,

    Steve

    Clare_AtAnthonyNolan
  • Thank you all. I bought a toothpaste without the fizz and a soft toothbrush. I am eating soft foods nothing too chewy.
    Hopefully it gets better soon.

  • Hi Laulau1

    The toothpaste change and a soft tooth brush sound like a good idea.

    Fingers crossed it improves for you.

    All the best,

    Michelle

  • Hi Laulau,

    I found having a really sore mouth really evident during my transplant as well. I found that using the gel and mouth wash consistently really helped keeping my mouse clear of any ulcers.

    I was adamant on not having a feeding tube so I kept my mouth clear for that reason as well.

    Hope you are doing good.

    Cameron

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