Hearing loss

[Stacky66]

Just started low dosage of Ventoclax last week, previously on Ibrutinib.Problem I’m having is lymph nodes around neck seem to be affecting my hearing, I would say probably dropped 50%, ears feel blocked.Is this possible?

[Poodle2]

Yes! I was almost deaf before I started treatment with V+O - please read my previous posts. I have to say that my hearing improved by 80% after the first O infusion and back to normal after the second one!

[mrsjsmith]

Like Petra I had hearing loss before starting Ibrutinib, but that cleared up quickly. Apart from muffled hearing I had what my ENT surgeon called a ‘ hot potato ‘ voice. It might also be worth getting your ears/hearing checked. I have very small ear canals so have regular micro suctioning to clear them.

Colette

[Dragonvrod in reply to mrsjsmith]

Hello, what is a hot potato voice?

[mrsjsmith in reply to Dragonvrod]

Imagine talking with a hot potato in your mouth ? I had a muffled nasal voice. It’s an ENT term.

[HopeME]

I don’t know the answer to your question but I would guess it is possible. I had a similar but different problem prior to starting V + O approximately 13 months ago. In my case I was getting up constantly during the night to urinate. I assumed that problem was related to the typical problems men have with their prostrate glands as they age. After a couple of months on O + V I started routinely sleeping through the night without getting up to go to the bathroom and that continues to this day. My assumption is that I had internal lymph nodes that were pushing against my urinary track impeding the flow of urine and causing the frequent need to go to the bathroom? I haven’t discussed this with any of my doctors as once the problem went away I forgot about the issue. Maybe you have a similar issue with internal lymph nodes impacting your hearing? It’s definitely worth discussing with your doctor. Hopefully, as you continue with V + O your hearing issues resolve 🤞 . Good luck. Mark

[Murphy63]

I had this same issue. I had incredible head congestion as a result of Covid and my ears were completely blocked, which remained after I got better. I was probably 80% deaf in my right ear. My neck nodes were quite swollen and I suspect were causing my Eustachian tubes to not be able to drain fluid behind my ears properly. I started V + O treatment shortly after and my neck nodes went down almost immediately and my hearing came back. I’m 4 months to treatment and hearing is still normal.

[flipperj]

Are you overlapping Ibrutinib for the ramp up?

[Stacky66 in reply to flipperj]

No i they stopped my Ibrutinib and other meds about a month before, she said they’d stopped working so no point carrying on. Not sure she was right as a few days later nymph nodes around neck exploded.

[flipperj in reply to Stacky66]

I transitioned from BTKi to V&R. The BTKi drug should be overlapped for the duration of the Venetoclax ramp up due to the risk of explosive disease progression. It happens as a result of the evolution of the disease to a more aggressive form while on the BTKi therapy. Even then, it is not always possible to successfully discontinue treatment with the BTKi. This was the case for me. ncbi.nlm.nih.gov/pmc/articl...

[Stacky66 in reply to flipperj]

Thank you , I thought it odd just to stop it. I’ve been rough ever since

[Stacky66 in reply to flipperj]

Are you in the UK? Incase it’s different here.

[flipperj in reply to Stacky66]

No, I’m in the US. The situation is not regional but awareness of it is.

[Mumu1]

Hello Stacky66,

My hearing was seriously impacted first by Ibrutinib (was unable to recognize songs and regular speech), but nobody made the connection until I stopped Ibrutinib and the symptoms disappeared fortunately. It was not swollen lymph nodes causing the problem. - Then I switched to alcalibrutinib due to the hearing issue among others: no problems there.

Last year, I was switched to O &V, I’m still on Venetoclax. I did develop hearing problems again without the ENT being able to identify a reason. I’m wearing hearing aids now so I can participate in the life around me. It seems to be getting better, but I still need the hearing aids. Again, none of the doctors is willing or able to see the reason for the hearing loss in the medication. The manufacturer though is looking into the possibility.

Everyone has a different “weak spot”, mine are clearly my ears even when lymph nodes are not swollen at all. (With Ibrutinib way worse the with O&V),

I wish you all the best and keep my fingers crossed for you that your hearing is coming back completely!