[harflepdParticipant]

Hi. I have just completed 75 cycles of lenalidomide, 3rd line treatment, and had a sudden loss of hearing. The left side is a severe loss, 95%, the right side is modertae, 50%. The only thing I can attribute the loss to is the lenalidomide. Has anyone else experienced this and does the problem rectify itself if the medication is suspended?

[kh0305Moderator]

Hi harflepd,

I’m one of the new discussion forum volunteers. My dad has MM and is currently going through treatment for his first relapse.

Whilst I haven’t any experience of him being treated with lenalidomide, he did suffer with hearing loss during his first treatment with thalidomide. He did regain his hearing (after losing around 75% on one side) when he switched to revlimid, though he has continued to have ongoing hearing issues at certain pitches. These issues with certain pitches have left him being very jumpy to noises at these pitches regardless of whether he is expecting the noise or not, being unable to attend theatre performances etc without ear plugs as he finds it too painful and even finding the television too loud and asking us to turn it down, despite the rest of us not being able to hear it. As I say, it is nowhere near what it was in terms of severity, but definitely has given him some long term issues.

I would say to speak to your doctor/consultant. Dad had some hearing tests to try and assess the extent of the problem so I’m sure they will be able to get these sorted for you too. Hopefully, you too will regain your hearing and with luck won’t have any other issues.

Hope it goes well x

[kh0305Moderator]

*sorry slight typo – Should have read whilst I haven’t any experience of him being treated with lenalidomide causing hearing problems, he did suffer….
i.e. almost the opposite to yours. Hope that makes more sense now! He was on the revlimid for 7 years after the switch. He has since had two other combinations and neither have made any difference to the hearing issues so seems the sensitivity to certain pitches will remain.

x

[harflepdParticipant]

Hi kh0305 – thank you for the feedback which is very much appreciated. Its interesting to note that your father’s issues are the opposite to mine – no hearing problems when on thalidomide and I cannot turn the TV up loud enough! There are very long delays for EAR/ENT appointments – greater than 20 weeks so looking to go private to see if the cause can be identified. Please pass on my best wishes to your father. Thanks again.

[kh0305Moderator]

Hi harflepd,
Wow that is a long lead time 🙁 I guess not helped by covid delays. I hope that you manage to get a private appointment soon and they can get to the bottom of what is going on for you. It is funny how your symptoms are pretty much the exact opposite. I guess MM continues to be a unique experience for each person in many ways! Please keep me updated how you get on. I hope that you are able to get your hearing back like dad did. Thanks for your good wishes and wishing you all the best too x

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