Bleeding from Acalabrutinib

[Tofa80]

Good morning,

i woke up today at 4am with a bad taste in my mouth and spit in the sick and noticed some blood. I did not notice any cuts in my mouth or bleeding gums. It stopped a couple of minutes later and there’s no more blood when I spit. I had read and had been told that Acalabrutinib can cause bleeding, I sent a message to my doctor but have not heard back yet. Any advice/comments? I’d really appreciate it.

[Sepsur]

I was on ibrutinib which I understood also worked at a blood thinner, one of the characteristics of CLL - is it makes our blood sticky & clump together - hence the need to thin it - that’s what I was told anyway. This led to me bleeding all over the place ( & steroids thinned my skin)

[Tofa80 in reply to Sepsur]

thanks for the reply and I hope you are doing better now.

[Sepsur in reply to Tofa80]

once I stopped all meds - the problem evaporated into thin air

[Denisguay in reply to Sepsur]

Why you take steroids? CLL dont do The blood clump... Ibrutinib It IS antiagreggant not antiacoagualnt or Blood thinner.

[Newdawn Administrator]

Obviously you need your specialist’s opinion on this Tofa but I had a couple of mild episodes of bleeding on Ibrutinib. I’m pretty sure it was from my gums even though they didn’t seem to be sore. I know it’s not Acalabrutinib but similar mechanism at play. It soon stopped with no ill effects.

Newdawn

[Tofa80 in reply to Newdawn]

thanks a lot for that. Very reassuring !

[kitchengardener2]

I take Acalabrutinib and occasionally notice a bit of blood when I brush my teeth, perhaps bit more aggressively. I don't notice blood anywhere else. My consultant always asks if I have noticed any bleeding. I didn't quite understand where I should be looking for blood but my friend (a retired oncology nurse) said that it meant was I bruising more, blood in stools or urine. Prior to Acalabrutinib, I wouldn't have said that there was actual blood in my stools but they were very dark. I put that down to the prunes I was eating to aid constipation. I was anaemic but once that went so did the dark stools.

I was also prescribed Apixaban for a suspected irregular heart rhythm in July. I was concerned about taking it and therefore doubling up on blood thinners.

I haven't noticed any difference, I still take Apixaban although I am concerned that it may not be necessary. I have a cardiologist appointment on the 23rd so will see what happens them. I have varicose veins in my legs and these are much better since the Apixaban.

Swings and roundabouts I guess.

Stay well Alice x

[Tofa80 in reply to kitchengardener2]

thanks, Alice, and all the best to you !

[Mtk1]

Hi Tifa80, I have had same experience as you, waking in the night and blood in my mouth, I also had blood blisters inside my mouth which just came and went with no issues. I’m also on a blood thinner for my heart issues and when I mentioned it to my haematologist he was ok about it, sorry I didn’t say I’m also taking acalabrutinib. Dave.

[Tofa80 in reply to Mtk1]

thanks, Dave, I appreciate the response. My hematologist just got back to me and said to just watch it. Guess it’s not that unusual. All the best to you !

[kitchengardener2 in reply to Mtk1]

Are you keeping well Dave? I have the cardiologist appointment on 23rd so will hopefully find out if there is a problem with my heart.

Stay safe Alice

[Mtk1 in reply to kitchengardener2]

Good luck with that Alice I’m doing ok thanks, had my bloods done last Monday and have telephone appointment with consultant on Monday, should find out how things are then, but I’m feeling ok. Thanks Dave x

[kitchengardener2 in reply to Mtk1]

Let's know how you get on. Good luck Alice x

[Teemed]

I initially had some bleeding but it went away after a few months.

All the best to you

[Tofa80 in reply to Teemed]

glad to hear and thanks so much for replying to me!

[DoriZett]

On Acalabrutinib I had mouth sores that looked like blood blisters on the insides of my cheeks (never noticed any on my gums). They were as small as a pin head sometimes, and as large as a pencil eraser head other times - very fluid filled. When the larger ones broke, I would spit out some blood. Here is a magic mouthwash recipe (there are lots of them but the one I favor is): 1/3 baking soda, 1/3 hydrogen peroxide, 1/3 warm water. Rinse and spit 2-3 daily. Hope that helps.

[Tofa80 in reply to DoriZett]

thanks a lot for the tip. I’ve been getting these as well. Other than that, I haven’t had many side effects. Hope it stays that way and all the best to you, too!

[Drago1941 in reply to DoriZett]

Initially, when I started taking Acalabrutinib 2.5 years ago, I had the same issue of blood blisters in my mouth for 2-3 months. I still get them but rarely. Calquence does not want to list this as a side effect, but based on the comments I've seen over the last couple years, maybe they should.

[DoriZett]

Mine started 10 months into treatment but I did have a couple small ones in my first 6-8 months off treatment. It did make me wonder if treatment caused it or the CLL/SLL itself ….