[jataylorParticipant]

I experienced profound hearing loss while having stem cell transplant.  Nobody seems to know much about it – this is not a known side effect of the drugs I was taking.  It was bad for about two months, but has gradually returned to how it was before I started treatment.  I’m beginning to think that it was the result of nerve damage caused by the chemotherapy, but nobody really seems to know.

I’d be interested to know if anyone else has experienced this?

[suenevParticipant]

It is gratifying to know your hearing came back.  I am now 6 weeks post transplant and have gone from a 50% hearing loss pre transplant to an 80% loss at the moment.  Without hearing aids I can hear nothing.  My consultant says the transplant shouldn’t have caused this but I do know they gave me a couple of doses of an antibiotic called Gentamicin when I developed an infection and that particular drug is known to cause irreversible auditory damage!  Am now on watch and wait with the ENT consultant to see if things improve.

[jataylorParticipant]

I’ve been increasingly aware of the impact of the stem cell transplant on my nervous system generally.  Recently a (private) audiologist checked my hearing and said that the deterioration in the hearing in my left ear was related to the auditory nerve, which was probably affected by the chemotherapy.

I was given antibiotics at the time of the transplant but am not sure what they were.

So overall my hearing is better than it was immediately after the transplant (it took 2/3 months to improve) but worse than it was before the transplant.

[suenevParticipant]

Thanks for getting back to me.  My hearing has continued to deteriorate since I last posted.  It might be an infection so the ENT consultant has prescribed some antibiotics and I have to go back again next week.   Feeling very cut off from the world!

The haematologist said the transplant shouldn’t have caused hearing loss, but at a recent Myeloma UK Patient Information Day I met a lady who had had a transplant in the same hospital I had mine and she lost her hearing.   It was restored through inserting grommets but she said it was very upsetting at the time.

I wonder what the incidence of hearing loss through SCT is nationally – and internationally for that matter.  I can’t find a lot of information out there.

[jataylorParticipant]

Perhaps this is something Myeloma UK could look into? Hopefully someone from the organisation reads these posts.

[auroraMember]

I developed tinnitus when Thaladomide dose was increased. It stopped when I’d completed 4 cycles. Didn’t have any problems immediately post SCT but it’s come back again in the last 2-3 weeks. As I’m not on any treatment at the moment I am slightly confused with what’s caused it.

I also developed  a numb lip during VDT treatment, but this also went when treatment stopped.

 

[suenevParticipant]

I think Myeloma UK monitor the forum and comment on some of the posts.  I did however contact the nurse at Myeloma UK about this and she sent me a very comprehensive response, detailing all the possible things that could cause hearing loss during treatment.

My hearing continues to improve but until I go back to ENT in couple of weeks time I won’t know whether I am back to pre-transplant levels and I suspect if it’s still down a bit they still won’t be able to tell me if it’s permanent or temporary or what caused it.

It would be good if someone could keep an official record of how often hearing loss and tinnitus occurs as a result of treatment in order that the frequency of these problems can be monitored and more learned about it.  However, I suspect that it is not a common enough problem for it to be worth devoting resources to it.

I also contacted Action on Hearing Loss to see if they could help.  They knew very little about hearing loss as a result of SCT but did say that various forms of chemotherapy can lead to permanent damage to the cochlear and the auditory nerve.

[tkomaParticipant]

Wikipedia have an explanation as to why this might happen if you type in “Hair Cell” and so do https://www.actiononhearingloss.org.uk/community/blogs/our-guest-blog/regenerating-hair-cells-a-new-approach.aspx

• This reply was modified 7 years, 1 month ago by  tkoma.

[WinkParticipant]

Hi Jataylor, I was diagnosed with myeloma since 2003 and has being coping well but experienced two relapses, nevertheless for about two years now i have been experiencing tinnitus in both ears for the pass two years and at times when its quiet its terrible.
I’ve had my hearing tested with good results, but was told the buzzing and whizzing i am experiencing was not curable so hence i am trying live with it,but its a nightmare.
Let me know if yours is the same and you are able to get some help.

[jataylorParticipant]

I’m replying to the most recent post (2 months ago) from someone who is suffering from Tinnitus, but I haven’t found a way of replying to his post.  Just to say that tinnitus is not a big problem for me, but increasing deafness is, and it has been suggested that I see a specialist but so far no appointment has been made.

Action on hearing loss has some useful ifnormation about tinnitus, and its shop includes aids of various kinds.

It’s sometimes difficult to know who to go to when it’s not clear if your problem is myeloma related or not.

 

 

[lynnesParticipant]

I suffered from inexplicable hearing loss (left ear) long before I was diagnosed with myeloma.  I am currently on VTD hoping to go into remission and then go ahead with a STC.  I already have hearing aids which I don’t wear unless I am going out but it looks like I might get them adjusted post transplant.  I would be interested to know if there is anyone out there who suffered hearing loss before learning they had myeloma?

[suenevParticipant]

Hi Lynne

I have a hereditary hearing loss and have worn two hearing aids for a number of years.  I was diagnosed with multiple myeloma in October 2015 and following induction treatment with Revlamid, Cyclophosphamide and Dexamethasone as part of the Myeloma XI clinical trial had a SCT in January 2017.  It’s a long story as to why it took me so long to get to that stage!

Before SCT my hearing loss was about 50%.  I had met a lady at a Myeloma UK Information Day who told me she had lost her hearing temporarily after SCT, conincidentally she had the SCT at the same hospital as me.   So I was at pains to express my concerns about this to the consultant prior to SCT and he said it shouldn’t affect my hearing.

I was therefore dismayed that approximately 16 days post transplant my hearing disappeared completely in my left ear, followed by that in my right ear two days later.  They gave me a steroid nasal spray which marginally improved things but then it disappeared completely again.  No-one seemed to understand why this had happened and eventually I got an emergency referral to ENT at the end of February.  Again they couldn’t understand what had happened but gave me some more steroid nasal spray and put me on a course of antibiotics.    At this stage no-one knew whether the hearing loss would be permanent or not.  At that stage it was a 90-95% loss and they fitted me with some very powerful hearing aids.

By the end of March my hearing had improved and I could cope very well with the new hearing aids.  As it got better they became too powerful.  I went back to ENT about two weeks ago and they said that my hearing was almost back to pre SCT levels, just slightly down in the left ear.  I am not surprised by this as I have had a number of ear and chest infections post SCT and it is always my left ear that is affected.

Another thing I learned is that while in hospital I had an infection and they gave me an antibiotic called gentamicin, which is apparently very good for people who are neutropaenic.   Unfortunately it is also ototoxic – which means it can damage the cochlea and the auditory nerve permanently.   This might be something worth discussing with your consultant.

Hope this helps

Best wishes

Sue

[lynnesParticipant]

Many thanks for your reply Sue.  My hearing loss began after I was prescribed Ramipril for slightly raised BP.  I learned that this too is an ototoxic drug but nobody would accept that it had caused my hearing loss (rather I was quite loopy).  To add insult to injury my BP is only ever raised when confronted with a BP monitor – over 24 hours at home it was slightly raised but not of concern.  I had grommets inserted and the hearing in my right ear improved but I am still virtually completely deaf in my left ear so an SCT won’t make much difference there but I dread losing more hearing in my right.  I bought “invisible” hearing aids which can be adjusted so hopefully this might prove useful post SCT.  Reading through your post again it looks like it has taken about 6 months to recover hearing but how are you in general?

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