Acalabrutinib and Blocked Ears

[ScruffyDuck]

I started Acala two weeks ago and have had some side effects including bruises, blood blisters in the mouth and headaches. Yesterday I noticed that my ears are blocked on both sides. Feels like when you need to clear your ears when on a plane. The sound effects I get are crackling. I am unable to clear the ears. I have no symptoms of cold or other chest infection.

Has anyone else experienced this?

Many thanks

[Sushibruno]

I thought I was the only one but I’m not. I’ve been experiencing the same symptom after starting acalabrutinib over 1 year ago. I went to an audiologist and another specialist. They found nothing. I never had this problem so I attributed to these meds. To this day I still have this symptom but it’s much much better not as clogged. My hematologist doesn’t seem to think it’s related. I definitely do.

[ScruffyDuck in reply to Sushibruno]

Thanks! I am seeing my consultant next week so if has not cleared up then I will ask him about it

[Spark_Plug]

Seems to me that someone actually did point to tinnitus as some thing that can occur with these medicines, give it a quick look up in the search box.

[ScruffyDuck]

Thanks I will do that

[albie58]

I also had blocked ears when I started acalabrutinib. It lasted for a month and then slowly subsided. Currently I don't have that issue. I never had tinnitus with it tho. There is a FaceBook group specifically for those using Calquence. AstraZeneca hosts it. There are a few others on that page that also had blocked ears...like you get when you are on a plane is how they put it.

[ScruffyDuck in reply to albie58]

Thanks !

[Bobby9toes in reply to albie58]

I would love to know the name of this group as I have been on Calquence since January

Jan

[albie58 in reply to Bobby9toes]

Hi Jan! It's called Calquence Connections. Go into FaceBook and search for it. It will pop up.

[Bobby9toes in reply to albie58]

Thank you

[Katie-LMHC-Artist]

I saw my oncologist yesterday. I mentioned blocked and inflamed ears. Unsure if it is CLL related or springtime allergies. He gave me a prescription for drops to take for a week. I have been on Acalabrutinib for a year and a half. We also discussed switching to Zanabrutinib due to having continued headaches . I am in the low percentage that have continued headaches. I hope things get better and you are able to tolerate Acalabrutinib. Sending well wishes!👩‍🦳

[ScruffyDuck in reply to Katie-LMHC-Artist]

Thank you 👍

[DoriZett]

Sorry you are having these side effects. I have only had the blood blisters in my mouth - which continued (with less frequency) once discontinuing treatment. There I believe they are more CLL/SLL related (compromised immune system) than from treatment. There are many "Magic Mouthwash" recipes but one that helps me: 1/3 warm water, 1/3 hydrogen peroxide, 1/2 baking soda - swish around in the mouth 2-3 times daily. Wishing you some relief. I am 31 months off of Acalabrutinib and holding in partial remission of SLL/CLL - good treatment for me!

[ScruffyDuck in reply to DoriZett]

I suspect Acala for the blood blisters in my mouth. Never had one in 12 years of wait and watch, Within a week of starting Acala I got my first mouth blister and more since.

I have used Corsodyl , a proprietary mouth wash recommended to me some years ago by my dentist.

[SeymourB]

ScruffyDuck -

It really sounds like an infection blocking your eustachian tubes. An otolaryngologist (ENT - Ear/Nose/Throat) specialist may be able to help check if there's also fluid behind the ear drum.

If it's "just" swelling, a short course of oral steroids might help.

Best of luck,

=seymour=