Hi girls
Today I have been told that the hearing loss I have suffered is permanent and irreversible. I am completely deaf in one ear and have some loss in the other. I am 39. I am a lawyer who goes to Court a lot so this is a real problem, and not one that I was told might be a side effect of chemo. Don’t get me wrong, I would still have had the chemo, but has anyone else’s hearing suffered and did you get any of it back?
Kinden
x
Hi Kinden
I have experienced ‘white noise’ in my ears since chemo and never put 2 and 2 together. I did mention it to my doctor a few months ago and he said it was most probably tinnitus and that there was no cure for it but it could go away of it’s own accord.
I have just learnt to live with it.
Have you enquired about a hearing aid? There are new digital ones on the market and very discrete - this may enhance your hearing in the ear that has experiences some loss.
Anita
Hi Kinden,
What chemo were you on? About 10 years ago I was on ECF (epirubicin, cistplatin and flurouracil (5-Fu)). I was told and had it in writing that cisplatin can cause irreversible hearing loss and that as soon as anything, like tinitus, was noticed the onc should be told. This happened to me and when I informed the medics I was immediately given a hearing test and found to have lost some hearing in my right ear. The C drug was then changed to carboplatin. I do know that carboplatin is still used, but havent heard recently of anyone on cisplatin. It is a much cheaper drug than carboplatin!!
dawnhc
I had 3 FEC and 3 Taxotere. I have been measured up (by having weird blue foam put in my ear) for something called a cross aid, which comprises a microphone on my left (deaf) ear and a hearing aid in the right, so I’ll see how I go on that. I was in Court today and had to really strain to hear what the judge was saying, luckily it was a short hearing and I was only there for a couple of minutes, but it did quite frighten me how much I couldn’t hear. I’m told that a hearing aid will not help my left ear at all cos all it does is amplify what you can hear and I can hear nothing.
Thanks for your replies girls
Kinden
x
I’m now on my 3rd lot of chemo, 1st was just standard chemo, in 2000, second in 2002 Taxotare and now 3rd started on fortnightly Paclitoxol, but after suffering a lot of sickness and loss of balance, I’ve suddenly gone deaf!!
I hope that it isn’t permanent but if it is let’s hope I can get some help for it.
I didn’t know hearing loss was a side effect either. Really sorry that this has happened to you, it must be horribly stressful and a big adjustment. Not something you expect to face in your 30s. I hope for your sake there is something that can be done about it.
Nicola x
Hi
this answers a few questions for me…I am nearly 6 months post chemo and have terrible tinnitus in my left ear…I can hear in both ears but cannot now have a conversation with my OH if the TV is on…my right ear is less affected…it just sounds like listening to the sea in a shell when you are a child…whooshing noises…only noticable when eg…I am in bed and it’s all quiet…I just thought it was my age…nearly 54…I had 3 fec and 3 tax…wasn’t aware that tinnitus was an se…it wasn’t mentioned and I didn’t think to ask!!..
I too have a hearing loss but manage okay without a hearing aid but I think I have been lip reading for a long long time but was not aware of this until a couple of years ago. I always concentrated on peoples lips and never had real eye contact. Now I have permanent tinnitus which as someone said above is worse when it is quiet or when in bed at night. To overcome this, if the noises become unbearabe, I turn on the radio or use earphones to listen to talk radio and that helps a lot. BUT as time goes on I find that I can ignore the noises, something I thought would never happen. I also have floaters in my eye and that really annoyed me at first but it gets easier too. Except when I try to swipe a fly off the page that is not even there!
KINDER, I am so sorry to read about your hearing loss. Especialy in the job you do. My father is elderly but deaf and if he is in the room with lots of people speaking he cannot follow the conversation, but with his hearing aid in he can hold a one to one conversation with no problem. However when I pop round to see him I have noticed he prefers not to keep his hearing in during his day. He says the hearing aid causes his ear to become wet so leaves it out. This also has the added advantage of blocking out the noise from the noisy kids next door!
Kindle do you think you wil have to change your job in same way? Keep in your job but do something else that does not mean you have to attend court? I hope you can get your head round this new probem. BC is such a terrible disease that people do not realise just how it can affect us in lots and lots of different ways. I am on chemo just now but think the CHOP chemo regime I have over 23 years ago may have caused the hearing loss for me. Hugs to KIndle, from Val
Spanishchris, thanks for reviving this thread, as Applestreet says, it answers a lot of questions. which were raised in a thread a week or two ago. I started on the same chemo as Kindensurprise but was changed after one FEC as I wasnt allowed to have the Epyrubicin. so I then had 4 TC (taxotere/cyclophosphamide). I did lose my hearing in one ear for a few months, but thankfully it returned, but when I mentioned it to the ONC at the time they really made no comment whatsoever. I was never made aware deafness is a possible SE either.
It was very frightening as at first even my oncologist thought I’d had a small stroke, and there was even talk of a small brain tumour. Thankfully this was all ruled out after a CT. I think it was the circumstances that gave rise to these ideas. I’ve never been particularly hard hit by the chemo, except on this last occasion. (chemo for the last 4 weeks has been suspended) I was feeling ill on the Sunday evening, went to bed feeling nauseous, threw up for the next 4 days and lost my balance completely, waking up on the Thursday completely deaf. I don’t know who was most relieved me or my oncologists when after hearing tests it was decided it was toxicosis.
Spanishgirl, Sounds dreadful, hope they manage to find a more suitable chemo for you, and that it is not permanent loss. Mine did come back, very suddenly xxx
Spnish Chris,
just a virtual hug for you, lets hope you are just like nannabarb and it comes back quickly,
best wishes
and thinking of you
anne
Hi all, just arrived home from the hospital. They’ve changed my chemo to an oral one,Capecitabine, looking at the side effects though I’m not sure this is a step forward. Looks as though my hearing loss could be permanent, oncologist was talking about seeing the audiologist to see about fitting me with a hearing aid when I finish the chemo. So, fingers crossed my hearing comes back.
everything crossed Spanish Chris xxx