Hi all I’m not seeing my haematologist until mid January so I thought I would ask you lovely lot if anyone has any top tips on coping with ulcers!
Since increasing my chemo again I’ve had at least 2-3 ulcers in my mouth for the last 4 weeks and they’re driving me crazy!
Will they calm down or am I likely to always have them while on chemo?
Thanks Louise xx
Hey Louise... 
Firstly, I am really sorry to hear that you are suffering with those terrible toxic medication side-effects...
HU is my guess of course... (?)
However, some might debate that 'Mouth Ulcers' are not side-effects, but are instead, symptoms of our MPN conditions... (?)
Personally, my own research and experience leads me to think that the former explanation might be closer to the truth...
However, and if that is so... Then this too might pose a real dilemma of sorts for many, as HU is what is almost always prescribed as 'Frontline' MPN standard treatment...
When I was taking it, I did find a little relief by gargling with Bi-carb sodium...
Since that time, I have learned that most ulcers caused by HU will not completely resolve themselves until HU is actually ceased.
There are those of course that have been on HU for many years, and that makes healing most problematic for some. I am also sure that there are many of that experience here on this Forum, and no doubt they will also chime in with their variety of remedies in due course...
Not sure of what your MPN might be, however, perhaps it might be worth trying Pegasys Interferon , if that is possible...
Very best wishes Louise...
Steve
(Sydney)
I have been on H U for about eleven years, have had occational mouth ulcer use Difflam the ulcer usually goes in two or three days.
I am on HU and do not have ulcers all the time. However, when I do, I use Anbesol liquid available from the chemist. I just dab it on at intervals until it is gone Sallie
Mouth ulcers are a classic sign of hydroxyurea (or other) toxicity and something that is all too common. When I was on HU I used a gel made by PerioSciences called AO ProVantage. It is soothing and helps the ulcers to heal more quickly.
If you are having mouth ulcers, then be aware of some of the other oral side effects to watch for: thrush, leukoplakia and oral carcinomas. Not to say any of those will happen, but something to monitor and respond to as needed.
Sometimes the docs can be rather dismissive of the adverse effects. It is important for you to be assertive in getting your concerns addressed. You may wish to consider an alternative medication if chemo-cytoreduction is necessary for your MPN treatment. All of the chemotherapies come with their own risk-benefit profile and we each respond differently to them. It is up to you to determine what is in your best interests.
All the best.
I have had horrible mouth ulcers on and off over the last 10 years. The only thing that I find helps me is pineapple juice. I am reluctant to take any more medication. Best wishes
My dentist told me that once my ulcer (got it a few months after starting HU) had gone down use a zero alcohol mouthwash after I eat anything throughout the day as it kills bacteria which helps an ulcer form. Touch wood haven't had an ulcer since.
Wishing you a speedy recovery mouth ulcers are unpleasant
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