Has anyone got any advice for coping with or reducing the occurrence of mouth ulcers when taking hydroxicarbamide?
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Hi @Rose75 - good question! I’m not able to draw from personal experience on this one, but I hope that others will come forward and share their stories.
In the meantime, here is a link to information that might be useful in terms of treatments and self-help tips:
May I ask if you’ve spoken to your care team about the mouth ulcers? It’s always a good idea to keep them informed of symptoms you are experiencing so they can help. You can also contact the Blood Cancer UK support services team for information and support on 0808 2080 888.
Do let us know how you get on.
Take care,
Maggie
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Thank you Maggie. I had not considered ice lollys or ice cubes to ease discomfort. In my job as a teacher, I’m talking all the time..I probably need to up my water intake. Very useful info. Thanks again.
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Hi @Rose75
Mouth ulcers are just awful. I had them following radiotherapy. I tried quite a few different medications/mouthwashes recommended by my team. Have they offered any advice?
Nichola x
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I have not asked my Consultant yet but will do so at my next appointment. My CNN retired last month and so I am currently without one.
I have always suffered from mouth ulcers. I discovered sodium lauryl sulphate( which is an ingredient in many toothpastes ) make them worse. Tomatoes and coffee also don’t help matters. I rely on Corsodyl and paracetamol for pain relief. I am always on the lookout for new ideas though so thought I’d ask here! Thankfully, the ulcers are much better today.
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I’ll have a search to try and find the name of the mouthwash I used
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Hello @Rose75,
Thank you for your post.
We hope you are doing well.
We are sorry to hear about your mouth ulcers.
I can see that people have replied already with some great suggestions and more can be found on the page that @MaggieLT has suggested.
It’s a shame you are currently without a nurse specialist, hopefully there is someone taking over this role, perhaps call your haem team/ medical secretary to enquire about who will be your new point of contact?
We would advise contacting your team as they should be able to prescribe you some mouth washes such as chlorhexidine mouth wash, Difflam mouthwash or spray (which helps to numb the area) and/ or Gelclair. Your GP may also be able to assist with this, but the team will know more about what is commonly used at your hospital trust for this.
In terms of things to avoid, the NHS recommends:
- do not eat very spicy, salty or acidic food
- do not eat rough, crunchy food, such as toast or crisps
- do not drink very hot or acidic drinks, such as fruit juice
- do not use toothpaste containing sodium lauryl sulphate
These can aggravate mouth ulcers or may increase the healing process so it is best to avoid or reduce your intake of these things
We hope this helps & take care,
Emma (Support services nurse)
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Thank you for the advice. I fully intend to ask again about who my new nurse contact will be at my next appointment. If I have any more ulcers, I will contact them sooner. I am pleased to say that I’m ulcer free today!
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Hi @Rose75 an ulcer free day sounds good to me.
Look after yourself
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Let’s hope you stay ulcer free for a while! 
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