Hello.
I started treatment on May 26 with Kyprolis (carfilzomib) and dex. The results have nothing short of spectacular after only 3 cycles. I am now finishing my first cycle on the BiRD (Biaxin, Revlimid, and dex) protocol.
Unfortunately, I have sustained significant hearing loss in both ears, particularly in the high frequency range, since July 29. I have been using hearing aids for hearing loss since last year, with hearing tests going back to 2012. During all that time, my tonal hearing has been stable. My audiologist told me that chemotherapy, in general, is ototoxic and that Revlimid, in particular, can cause hearing loss. The loss is not reversible. My myeloma specialist does not believe Revlimid can cause hearing loss.
Has anyone had this experience with Revlimid? If so, did your hearing ever return to pre-treatment levels?
Thank you very much!
Olga
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OlgaMM - Name: OMS
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2008 - SMM, 2015 - multiple myeloma
- Age at diagnosis: 53
Re: Hearing loss while on Kyprolis and Revlimid
Hi Olga,
Hearing issues are clearly stated in the Revlimid monograph approved by Health Canada (link):
A layman's version of the Revlimid monograph is provided here; the relevant section reads:
Hearing issues are clearly stated in the Revlimid monograph approved by Health Canada (link):
Ear and Labyrinth Disorders:
Common: tinnitus, vertigo, ear discomfort, deafness, middle ear effusion
Uncommon: hearing impaired, hypoacusis
A layman's version of the Revlimid monograph is provided here; the relevant section reads:
"Between 1 and 10 in every 100 people have one or more of these: Some hearing loss and ringing in the ears (tinnitus)"
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Hearing loss while on Kyprolis and Revlimid
I'm really, really sorry to hear about the hearing loss you've experienced, Olga. I hope your doctor is wrong and that the hearing loss is not permanent.
There have been cases mentioned here in the forum in the past of myeloma treatments affecting people's hearing. More often than not, the side effect is ringing in the ears, rather than hearing loss. But there have been one or two cases of hearing loss mentioned.
Here are a few previous discussions you may want to look at:
"Loss of hearing during treatment - anyone had it happen?" (started Sep 1, 2015)
"Hearing loss" (started June 8, 2012)
"Tinnitus (ringing in the ears)" (started Apr 15, 2011)
Best of luck to you,
Cheryl
There have been cases mentioned here in the forum in the past of myeloma treatments affecting people's hearing. More often than not, the side effect is ringing in the ears, rather than hearing loss. But there have been one or two cases of hearing loss mentioned.
Here are a few previous discussions you may want to look at:
"Loss of hearing during treatment - anyone had it happen?" (started Sep 1, 2015)
"Hearing loss" (started June 8, 2012)
"Tinnitus (ringing in the ears)" (started Apr 15, 2011)
Best of luck to you,
Cheryl
Re: Hearing loss while on Kyprolis and Revlimid
Among the other souvenirs I have collected from my myeloma treatment, I have a constant ringing in my ears which makes it a little harder to understand people when they speak to me, To be clear, it isn't horrible, but its there 24/7.
My treatment included radiation for a month while concurrently getting five cycles of Revlimid, Velcade, and dexamethasone. That set me up for a bone marrow transplant followed by Revlimid maintenance until growing neuropathy forced me to stop.
The point is that I don't know which of the treatments caused the tinnitus (ringing ears). I DO know the Revlimid caused what seems to be permanent neuropathy in my feet and fingers (again, not horrible, but limiting and tough to ignore), I have had that for more than a year, just like the tinnitus. So it makes sense Revlimid could be behind the ringing in my ears as well.
I ain't complaining! Far from it. All things considered, it's still a lot better than the alternative.
My treatment included radiation for a month while concurrently getting five cycles of Revlimid, Velcade, and dexamethasone. That set me up for a bone marrow transplant followed by Revlimid maintenance until growing neuropathy forced me to stop.
The point is that I don't know which of the treatments caused the tinnitus (ringing ears). I DO know the Revlimid caused what seems to be permanent neuropathy in my feet and fingers (again, not horrible, but limiting and tough to ignore), I have had that for more than a year, just like the tinnitus. So it makes sense Revlimid could be behind the ringing in my ears as well.
I ain't complaining! Far from it. All things considered, it's still a lot better than the alternative.
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Sailor Mike - Name: Mike Verla
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 62
Re: Hearing loss while on Kyprolis and Revlimid
Sailor Mike and others: A surprising number of people develop tinnitus even when they do not have myeloma. Tinnitus is frequently associated with gradual hearing deterioration. I am one of those who did develop tinnitus quite a number of years ago even before being diagnosed with MGUS. At that time my ENT told me that ASPIRIN is thought to be one of the causes of the ringing in the ears. (I almost never had taken aspirin.)
After I started myeloma treatment with Revlimid and dexamethasone, my hearing worsened. It is now considerably worse than it was a year ago. I have been reading the entries from other forum participants and it occurs to me that most of us must be taking aspirin if our treatment regimen includes, as did mine, Revlimid. Indeed, even though I am now on Velcade maintenance without Revlimid, I continue taking a daily dose of baby aspirin. I think that it is quite possible, if my respected ENT was correct, that the aspirin and not the myeloma meds are responsible for my increased tinnitus and hearing loss. Additionally, my audiologist has told me that dexamethasone is known to cause hearing loss. Just something more to think about.
After I started myeloma treatment with Revlimid and dexamethasone, my hearing worsened. It is now considerably worse than it was a year ago. I have been reading the entries from other forum participants and it occurs to me that most of us must be taking aspirin if our treatment regimen includes, as did mine, Revlimid. Indeed, even though I am now on Velcade maintenance without Revlimid, I continue taking a daily dose of baby aspirin. I think that it is quite possible, if my respected ENT was correct, that the aspirin and not the myeloma meds are responsible for my increased tinnitus and hearing loss. Additionally, my audiologist has told me that dexamethasone is known to cause hearing loss. Just something more to think about.
Re: Hearing loss while on Kyprolis and Revlimid
Hi, Multibilly.
Thank you for your response. I have seen several sites that mention hearing loss as a side-effect of Revlimid. I had not seen the monograph, however. I contacted my doctor with this information and he, in turn, was going to contact Celgene. I feel caught between a rock and a hard place just now. I was about to go on Revlimid 10mg maintenance therapy after one more cycle on BiRD, but now all bets are off. I'm not sure what my options are. I am having a BMB next week to determine the status of my remission and, hopefully, we will find a solution.
Olga
Thank you for your response. I have seen several sites that mention hearing loss as a side-effect of Revlimid. I had not seen the monograph, however. I contacted my doctor with this information and he, in turn, was going to contact Celgene. I feel caught between a rock and a hard place just now. I was about to go on Revlimid 10mg maintenance therapy after one more cycle on BiRD, but now all bets are off. I'm not sure what my options are. I am having a BMB next week to determine the status of my remission and, hopefully, we will find a solution.
Olga
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OlgaMM - Name: OMS
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2008 - SMM, 2015 - multiple myeloma
- Age at diagnosis: 53
Re: Hearing loss while on Kyprolis and Revlimid
I have been on Velcade, Revlimid, and dexamethasone with the aspirin at one time or the other over the last four years since I was diagnosed with myeloma. I have seen an ENT for this a number of times. I have lost much of my hearing in my right ear, left ear just has normal age-related hearing loss.
I do not know what drug or drugs may have been the culprit, it appears there are more than I had initially thought. But my ENT and I do believe it is likely related to the treatments, it is just really hard to confirm it for sure and just what drug or drugs may have been involved.
I do not know what drug or drugs may have been the culprit, it appears there are more than I had initially thought. But my ENT and I do believe it is likely related to the treatments, it is just really hard to confirm it for sure and just what drug or drugs may have been involved.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Hearing loss while on Kyprolis and Revlimid
Hello everyone,
Here is an update on what has happened. My oncologist had me stop treatment for 3 weeks to further investigate the cause of my hearing loss. During this time, my hearing started to improve!
I saw a neurotologist to discuss if Revlimid could be causing my hearing loss. His opinion was that it was likely not the Revlimid since hearing loss caused by chemotherapy seldom improves. I did some additional research online and found a paper (see reference below) that said that Biaxin (part of the BiRD regimen) can cause temporary hearing loss.
Now I will be going on maintenance therapy, taking 10 mg Revlimid. I am wondering if that will cause my hearing to get worse or if I will continue to improve. We shall see.
Olga
Reference:
JK Hajiioannou et al, "Clarithromycin induced reversible sensorineural hearing loss," B-ENT, 2011 (abstract at Pubmed)
Here is an update on what has happened. My oncologist had me stop treatment for 3 weeks to further investigate the cause of my hearing loss. During this time, my hearing started to improve!
I saw a neurotologist to discuss if Revlimid could be causing my hearing loss. His opinion was that it was likely not the Revlimid since hearing loss caused by chemotherapy seldom improves. I did some additional research online and found a paper (see reference below) that said that Biaxin (part of the BiRD regimen) can cause temporary hearing loss.
Now I will be going on maintenance therapy, taking 10 mg Revlimid. I am wondering if that will cause my hearing to get worse or if I will continue to improve. We shall see.
Olga
Reference:
JK Hajiioannou et al, "Clarithromycin induced reversible sensorineural hearing loss," B-ENT, 2011 (abstract at Pubmed)
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OlgaMM - Name: OMS
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2008 - SMM, 2015 - multiple myeloma
- Age at diagnosis: 53
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