Hi eveveryone. This is my first post! I started acalabrutinib a couple of days ago and I have developed painless blood blisters in my mouth on the inside of my cheeks. My CLL team haven't seen this before as a side effect. Has anyone has experienced these?
thanks!
Oh my YES I have and at first they were the size of marbles back where my tonsils once were. That was the biggest they ever got and that happened just days after starting Calquence.
That was 3 years ago. However, I continue to have the blood blisters off and on ever since but they are only the size of a pea. No pain involved but you can feel when they are there and the only last a day or so and disappear.
They no longer concern me or my doctor but if I have then when I see my dentist he remains puzzled.
Panz 👍❤️🙏☘️😊
Dear Panz
Many thanks for your speeedy reply too - so reassuring. I will share this with my CLL team as they haven't seen this before. Also great to hear that you are managing well even having had CLL for over 30 years
with best wishes
Tivi
hello
When I started ibrutinib 5 years ago I had large blood blisters in my mouth. I had been told it was a common side effect of the medication.
My dose was reduced after 10 days as I was having other troubling symptoms.
I no longer get them, my only side effect now is sensitive skin.
Good luck with your treatment. It’s changed my life for the good.
Miller1960
Thank you so much for your speeedy reply - very reassuring
with best wishes
I totally agree with Miller 1960. Calquence is my third line treatment and I have never felt better !!! I am going on 36 years of having CLL.have been on Calquence for 2+ years. I do get IVIG every 4 weeks as I have no immune system of my own. But that just keeps me very healthy. I tell my doctor that I am the healthy sick patient she has and she laughs and agrees!
By the way welcome to our community it is a nice place to come for knowledge and support! We are here for each other!
Panz👍🙏❤️☘️😊
Many "Magic Mouthwash" recipes - mine is: 1/3 hydrogen peroxide, 1/3 baking soda, 1/3 warm water. Rinse 2-3 daily - usually clears them up in a day or two. There are some that use liquid lidocaine but that numbs your mouth like going to the dentist so I preferred the "homemade" version. I only had mouth sores (like blood blister - pea to dime size) when on treatment. Best of luck to you.
In the beginning of treatment I read the same recipe for managing the mouth sores!
Yes, I had those too, for several days after starting Acalabrutinib. They disappeared as quickly as they started- hope yours do too! I have to say that there were many things I experienced that my oncologist had not heard of! Thank God for this site and these wonderful knowledgeable people who are willing to share their knowledge and experiences. There is also a Calquence group on Facebook that has been very helpful. (I personally don’t use FB but use my partner’s.) Just reading this side effects and idiosyncrasies that people are experiencing (that aren’t always noted in the drug or oncology literature) is really helpful. We are not alone in this fight! Good luck!
Thank you and yes, this morning they seem to have vanished as quickly as they came! 😀 I have found information and reassurance here that my team was unable to give me - maybe they should be reading HealthUnlocked! Also thanks for the tip about Facebook - I will take a look,
Same here when I first started Acala but they disappeared after a few weeks and have never, one year later, come back. I just continued with my usual oral hygiene regime. I also bruised a bit more in those first months of treatment.
thank you so much for your reply which adds to the reassurance - mine have vanished this morning! 😀 and I will know not to worry if they come back.
yes, this happened to my husband, they only lasted a week or so then disappeared.
Hello Tivi19,
I had the same experience. The blood blisters in my mouth appeared when I first started Acalabrutinib but stopped after the first few weeks. I may get the occasional blister but it’s very rare.
Initially I used to bruise more easily but this seems to have improved as well. Generally have been very well on this treatment with very few side effects
I hope it works equally well for you. Best wishes xxx
Oh, you too? I thought it was just me.
Hi Tivi19, I have just started ibrutinib and got mouth blood blisters and ulcers straight away, I have an history of dental problems after having chemo for bowel cancer, so this came as no surprise to me. I told my CNS and Haematologist and he prescribed a Benzydamine mouthwash which seems to be working, glad others have said they clear up quickly. Best wishes to you for a successful treatment.
Me too! I had the same experience with blood blisters over three years ago. They appeared in my mouth when I first started Acalabrutinib but stopped after the first few months. I may get the occasional small blister but it’s very rare. When they first popped up, I called my oncologist and he didn't know what the cause was. Had the blood blistered examined by my dentist and he had no answer. Although not proven, the conclusion is that Acalabrutinib is the cause.
Many thanks for your reply - its so helpful. This forum has shown very quickly that there are many people that have experienced these blood blisters and I am wondering why its not on the patient information sheet! Maybe the manufacturers think that its there as part of the bleeding tendency - but I think its so specific and quite alarming, that it would be helpful for patients to mention this specifically and for our teams to know about it.
with best wishes
Yes. When I initially started taking Ibrutinib, I developed some horrible mouth sores. For this, I was prescribed Valcyclovir which I took daily (and still do) and quit taking IB until the sores healed. The valcyclovir solved that problem. 10 years later I’m still taking 420 mg of IB with no mouth sore issues.
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