Hi all. This is my first post. I’m so happy I found this website! I am 47, and was diagnosed with Ph+CML back in November of 2017. I started 400mg of Imatinib and I’ve been in it ever since with no real side effects other than dry mouth and tiredness. But back in December I developed a mouth sore on my tongue and it’s still there. I went to an ent specialist and he did a biopsy. Thankfully it isn’t mouth cancer. So now I’m wondering if this sore is being caused by the e Imatinib. It hurts, makes it hard to talk and wet, and is basically making me miserable, my hemirologist looked at in January and he said it’s an ulcer. Does anyone have advice? I don’t want to stop the Imatinib; j terrified if I change meds the cml will come back. I’m so stressed and I don’t know what to do! Help!!! 😊
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Help! Mouth sores with Imatinib???
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Kimbie3116, not to worry. You are approaching three and a half years on Imatinib 400mg. Depending on your CML level, which you failed to mention, there is a good chance that you can begin to lower your dosage. A lower dosage will work to eliminate side-effects. In the meantime, try to relax.
Please share your CML history including test dates and results. Thanks.
This is a very interesting topic, as I have had episodes of severe canker sores in the past. Not one, but several injuries at the same time that made it almost impossible to talk and eat. Very unpleasant.
The good news is that they haven't appeared in almost two years, which is a mystery to me, as they would show up out of nowhere. Let me give you a context:
A year or two before I started taking Imatinib, there were times when I had mouth sores. They were very small in size and number, usually one or two at the same time. Approaching the diagnosis of CML, I started to have an average of two episodes of severe canker sores a year and continued this way until I started to act to prevent it.
Are mouth sores related to Imatinib? I don't know, the leaftlet mentions this as a possible but unusual side effect. Is it related to CML? Possibly, but I have read many cases of people who deal with mouth sores and do not have CML. Do I have a solution? I don't know either, but I will tell you the things I did that coincide with the disappearance of those irritating mouth inflammations:
- I take my pills with my largest meal of the day.
- I eliminated my software engineering work and since then I started sleeping early, getting up early and having a lot more time to be outdoors in the sun, rain and thunderstorms!
- I stopped drinking a smoothie that I really liked that included avocado, yogurt and milk. This was probably causing an imbalance in my gut flora.
- I stopped eating cinnamon powder and tapioca. One or both could have been causing an allergic reaction.
- I joined a martial arts class to be more fit and socialize with others. Furthermore, I believe that close contact with other people allows you to absorb some of your energy (no science here). Exercising improved my digestion big time too.
In short, assuming you have eliminated the possibility that your mouth sores are another disease in themselves, try experimenting with your daily habits.
Hope this helps with your research.
I’ve been having fairly persistent Geographic Tongue since being Nilotinib but no other mouth sores. This is defo TKI as they started when I started meds. They don’t hurt they are just a visual annoyance more than anything else. And it’s annoying to wonder why they happen and persist. A bit like the purple spots on my upper arms and legs. Visual annoyance and a reminder I am “unwell”
Al
Hi
I am sorry you are experiencing these mouth sores and hope you might be feeling better.
After 3.5 months of taking 400mg Imatintib I have developed a sore throat and mouth ulcers on the inside of each cheek. I have been prescribed Benzydamine mouth wash and although I have used regularly for 10 days the ulcers remain sensitive.
I have also developed a swollen top lip in this period.
I am assuming these are side effects from the treatment. Can this be confirmed?
Many thanks and Take Care
Jonnie
Mouth sores/canker sores/sore tongue etc. can be a sign of vitamin B12 deficiency. Imatinib (or other TKI) may well be indicated in suppressing your red blood cells count - HGB, B12 can help support/increase red cell count.
Supplementing B12 may be worth a try.
Sandy