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Tinnitus - anyone else had this, and will it go away or am I going to have to learn to live with it?

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Tinnitus - anyone else had this, and will it go away or am I going to have to learn to live with it?

I am having 4x FEC and 4x T chemotherapy. Straight after my first FEC, I started suffering from a ringing noise in both ears. Not sure whether or not it went away, but it was there all the time after my second treatment. Told my oncologist. She just made a note, and sent me off for the third dose. I still have tinnitus. I was not warned about this, and don't get the impression that it matters to anyone other than me. I would really like to know whether there is any chance that my hearing will recover once I finish chemotherapy. Has anyone else had tinnitus and got over it? Has anyone had their treatment changed after informing their oncologist? If so, did it make a difference to the outcome?

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I had a bit of tinnitus before due to listening to loud music in my teens, but it's much more noticeable now and really getting on my nerves! I never read this as a side effect, and none of the nurses or doctors seem particularly aware or bothered by it- alright for them!!
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Hi, I suffer from Tinnitus anyway but chemo definately made it 10 times worse. Maybe the steroids are to blame - as it appears for me straight after chemo -  but it does calm down the closer you get to the next treatment so it should go when all your treatment ends - It is so annoying but there are worse things ... Good luck with all your treatment

Helen x

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Hi markthelark, I had a tinnitus problem after my chemo. It halted my sleep and I became more irritated. On seeing my difficulty, my hubby advised me to consult one of the hearing professionals in Toronto. I went to the doctor and he referred me to do audiometry(hearing test). He advised me not to concentrate on the sound and try to do some relaxation techniques. Also, he told me to use a loud clicking clock or high-speed fan in the night, in order to mask the sound in my ears. I got some relaxation after doing this. So it is better to go through an ENT examination. Your doctor will help you to overcome this condition.

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Hi ALL ,

 First off , I'am a not a woman , sorry !

I have Tinnitus mainly in the letf side , since Chemo for Cancer.

It came on over a 2 1/2 year period.

Some days I just want to scream !!!!!!!!!!!!!!!!!

My ONLY  respite is from excessive amounts of G and T !.

This is not ideal but anything to stop the ringing ! 

Does anyone have a non anchol remededy ??????????????????????????? please.

Sorry if there are spelllling mistakes but on my 8th G&T !

Also , does anyone else get no sympaphy from there partners ( mine is a wife of 40 years ).

Love to you all

   Marky

 

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I'm three years post chemo or thereabouts had 4 EC 4 Piltaxol and now have tinnitus in left ear which is getting worse.  I don't recall being told chemo could damage ear and it drives me mad.  Will it ever go?

 

one good thing is sound sets it off so if I sit in silence it's okay but it's affecting my relationship now 😭

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Hi sdfmeg, I have had Tinnitus for a few years now. Never had FEC but have had other chemo. It really got me down at first but I have learned to ignore it. Thought I never would but the worst time is when there is silence, if you are sitting in the car or in bed at night. I also have a floater in my eye which drove me mad at first but I have managed to ignore this too now except when I try to swat the fly that gets into my line of vision at times!
Things I do to help with Tinnitus. If it is worse in bed at night I put on the bedside radio. It masks the sound until I nod off. You can even put a radio on timer to switch itself off or if I wake up in the middle of the night I put in my earphones and listen to the radio that way. The Tinnitus always seems much worse when there is complete silence. But as the months go on my brain seems to deal with it and I can honestly say it does not drive me crazy any more. Tinnitus can take many forms and the sounds that people hear can vary enormously. Mine sounds like my heartbeat, is highly pitched, and when I got a hearing test they found that I did have a hearing loss. I found the hearing test difficult because I could hear the Tinnitus the whole time so did not know if I was hearing the testing machine or my Tinnitus.
I hope you do not have an ongoing condition but the brain is a marvellous machine and I hope your Tinnitus goes when you have finished your chemo. Wishing you all the best. I have periferal neuropathy with my present chemo which means I keep dropping things so now banned from emptying the dishwasher as I have brken so many wine glasses. Every cloud has a silver lining....somewhere! Val

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Hi - just popping in to say that I have "mild" tinnitus in one ear and have had for a long time. Mine has got louder since the treatment but I remember reading that this was a SE and am hoping that it will go back to the volume levels from before.

Unfortunately, it can't be cured and because mine is quite mild (I only hear a high pitched whine in one ear) I've got used to it. Campo is right, it's the night time that it seems to make it more noticeable - some times you have to drown it out with other sounds which make your brain concentrate on them not the noise. Stress also increases the sound so try not to worry too much about it while you're going through the treatment. Talk to your GP about it as they will have a better knowledge than the Onc.

Best wishes,
Sarabee x

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Thanks for your replies Campo, Dawn and Leah. It's good just to know I'm not alone in having hearing difficulties, and I really am grateful to you for taking the time to post. I did use the "ask the nurse" service, and am very pleased with it. Not only did I get to discuss my hearing problem (rare SE from the cyclophosphamide in the FEC, and might resolve over time but, as usual, no guarantees), but she also listened sympathetically whilst I told her about some of my other frustrations. Although she couldn't actually do anything about these, it was good to talk to someone who really listened and did not dismiss my concerns as trivial. I felt much better afterwards, and a lot more positive about things in general.

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I remember when I was on ECF (not FEC - I havent got the letters round the wrong way) Epirubicin/Cisplatin/Fluorouracil that I was warned about 'C' and if I had any ear/hearing problems on it to tell them immediately. Problems on this drug can be irreversible. I did start getting tinitus and had a hearing test done straight away which showed I had lost some hearing in my left ear. the Cisplatin was changed to carboplatin. I do still get tinitus some 15 years on.

Dawn

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Hi sdfmeg (and others)

I asked around the team here about tinnitus and while it's not something we currently have a lot of information on, we're happy to look into it for you if you submit a question through our Ask the Nurse service http://www.breastcancercare.org.uk/breast-cancer-services/ask-nurse

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Hi sdfmeg

This probably wont help at all as I had tinnitus before I was diagnosed. The tinnitus for me can be worse during the night but during the day not so noticable as too many other noises. My ONC did not respond when I told him, just took a note. Looked into this for the past couple of years and it either stays with you a long time (like me) or will just suddenly go. I am still waiting. Sometimes I find especially during the night if I use my little finger and massage the inside of my ear this makes it subside. Good luck and hope it goes away soon.

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Hello Rattles, Della and Barb. I really appreciate your taking the time to answer my post. It's good to know that, for some at least, it can get better. I specifically asked my onc about hairs in my ears, and was told it shouldn't be a problem. However, have since discovered that the C part of FEC is ototoxic. My tinnitus is not that severe, but what worries me is that it never stops and it's really getting to me that I can't have any noise-free time. Since I posted, I have had copy of onc's letter to my GP saying I have intermittent tinnitus. Don't know where "Intermittent" came from. She also told me that I can buy paracetamol and ibuprofen if I have pain with the taxotere I move on to after the next treatment. As ibuprofen is also ototoxic, I'm a bit dubious about this advice.

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Hi sdfmeg
I didnt get much tinnitus, but toward the end of my chemo (I had one FEC followed by 4 TC) I went almost completely deaf in my right ear. after a couple of weeks I went to the GP, who told me to 'oil' my ears twice daily, for a week, then went back and had them syringed. This had no effect whatsoever, so after another couple of weeks she refered me to an ENT specialist. As usual, I got an appt - 3 month later, by which time my hearing had come back, literally overnight about a week before I was due to attend the appointment. - so hearing prob are obviously just another of the joys of chemo !! Hopefully your will recover soon, good luck with the rest of your treatment and recovery xx
Barb
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Hi sdfmeg

I had tinnitus in one ear for a couple of days after each cycle of EC. I didn't get it with Tax and haven't had it since finishing EC. I think tinnitus was listed as a possible side effect for one of the other meds I was taking at the time - can't remember which but presumably one of the anti-sickness drugs. Hope this helps.

Della x

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Hi there,
I have tinnitus during my treatment with carboplatin and docetaxol. It is not a constant ringing, but the occasional shriek!! It can be really loud. It started around chemo 4, got worse at 5. I stopped at 6 partly because of this- but I have had chemo before so I already had nerve damage. It is not happening as often now I have finished chemo.
I think it might hep to write down the times you are experiencing it? That's what I did. I think its linked to the nerve damage some regimens cause, and like any side-effect, will affect some, but not others.
I am not sure what can be done about it. I also have neuropathy and agreed with my GP we would review in 3 months.
Rattles x