Tinnitus on Ibrance and Letrozole

Hi ladies, has anyone developed Tinnitus whilst taking Ibrance and Letrozole? I spoke to my Oncologist today and he feels it’s unlikely the meds are causing it. He said it’s rare. He wants me to have a hearing test. Now I’m concerned in case he takes me off the meds I have been on for near to years and have been fine with them. I’ve had it for around 2 weeks now and it drives me crazy some times. It’s 4.30a.m. and I’m awake with it. Any advice please.

[viennagirl]

I think it is unlikely related. I once saw a remedy on line but not sure where that was. You might google your condition and see what comes up. It is very annoying and I am sorry you are going through this. I had it years ago and it just went away without any intervention on my part. I think it will also just disappear or you will stop noticing it. Hugs Marlene

[Hidden in reply to viennagirl]

Thanks Marlene. It’s pure torture. Some days worse than others and some sleepless nights. I have Google’s it, read my medication leaflets and been on the official NHS site. I just hope it isn’t going to be permanent. My ears are free of pain and always been health albeit some hearing loss. The Oncologist is referring me for a hearing test as it’s 18months since my last one but I will probably have a long wait with the way things are with hospital appointments. We shall see. Take care Cheryl

[Hidden]

Hi,I've been experiencing 'tinnitus' for months now. I first noticed it around the end of September last year when after completing chemo mid August I was put onto letrozole and continue to have herceptin and perjeta.

Before Christmas, during one of my treatment days, I mentioned it to the nurse as it had gotten progressively worse. She went away to speak with an onc that was available at the time. When she came back to me, he had advised that I visited my GP to have both ears looked at to make sure there was no evidence of an infection or inflammation. I did this the following week and was looked at for less than a minute and told inside ears look perfectly healthy, helpful not!

So I've tolerated it when really I should have kept up the pursuit as at times it is really bad. It only affects my left ear, it buzzes and vibrates and I have a feeling of 'fullness'.

So last week when I spoke with my oncologist on the phone, I mentioned it to him and he was very Intrigued as he said that in all his years he can not recall this being complained of and then went on to tell met that he had one other lady who in recent weeks has mentioned the same thing! He had a look at notes and said that she is on exactly the same treatments as myself.

He has offered to scan her head which she apparently agreed to and also referred to ENT so he has offered me the same and I've also agreed so I'm just waiting to hear about that, I shall update on this.

He did say that although not a documented side effect, it's not out of the question as there are many side effects not officially confirmed.

I have never suffered with continual tinnitus and I definitely only became aware of it since starting letrozole. I've taken to writing down daily my side effects/symptoms so that I can log a pattern of what's happening between treatments.

Best wishes Caroline x

[Hidden in reply to Hidden]

Caroline this is really helpful thank you. I have got to go for a hearing test but not sure when that will be. It’s really bad in my left ear as well. I had it very slightly in one ear when I first went on treatment but it drives me crazy now. Interrupting my sleep as well now. Please let me know how you get on as I can pass any information on to my Oncologist. Take care and hope you get some positive results.Cheryl

[viennagirl in reply to Hidden]

Perhaps you should go off Letrozole for a wee while to see if you can stop the ringing. There is a natural way to get a similar effect to Letrozole. Letrozole is given to suppress our estrogen. If you take a tablespoon of freshly ground flax seeds every day - mixed into a pleasant tasting drink of rice milk or something like that you can achieve the same or close to the same estrogen suppression. I use the ground flax seed remedy from time to time but still haven't had the courage to go off the Letrozole. I don't want to anger my Oncologist because I think they want to be certain we are suppressing the estrogen and I don't think they trust any home type remedies. But if you are really having a very hard time you should - maybe - consider it. The onc wouldn't likely be mad at you if you explained how desperately you want to stop the horrible ringing in your ears. Hugs Marlene

[Hidden in reply to viennagirl]

Hi.Not an option for me as letrozole is what has halted progression of the lesions in my liver, chemo didn't work too well. I know my oncologist would not even entertain the idea and I have to say I wouldn't dare chance it. I already have used flaxseed in my diet for years and I still went on to have this recurrence so I don't have much faith in it, and I don't find this is without it's side effects for me also. Definitely irritates my gut if you get my drift.

More than anything I just want an answer to whether it is in fact letrozole responsible or is there something else going on that needs addressing?

I received an appointment today for a head CT which starts the investigate ball rolling.

[Hidden in reply to Hidden]

Let me know how you get on.Best wishes.

[viennagirl in reply to Hidden]

I hope you find a solution to the ringing in your ears. I can imagine it is difficult to live with. Hugs Marlene

[Hidden in reply to viennagirl]

Thanks Marlene. I will see how the problem is approached. Yes, I know Letrozole is an Oestrogen suppressant and that’s why I have to take it. Thanks for the advice. A dietitian advised flaxseed in my diet along with other seeds when I was first diagnosed. I mix it with breakfast cereal but must admit it’s not my favourite flavours.

[Esragun in reply to Hidden]

hi, how is your tinnitus now? I have been using lerazole and tinnitus started. I wonder your tinnitus stopped?

[queeneee]

Hello, I got tinnitus 10 years ago on first cancer diagnosis. I got a referral to a brilliant consultant who explained that everyone has an element of tinnitus, which is due to losing the top end of your hearing as you age. Most people don't hear it or suffer. However if you are under stress you tend to 'over monitor', particularly if you have lots of other symptoms, drugs and doctors visits. He said it was common in cancer patients. He said I had to retrain myself not to hear it. He gave me a little device to generate white noise sounds - waves, birdsong, crickets, static - to choose from. He told me to find a noise that masked my tinnitus tone and just loud enough to blank it out., then put it on whenever I heard the tinnitus and particularly when in bed at night. If you can get one with a timer to switch itself off, so much the better. (you can probably find something online/through alexa these days) It worked for me. I still have tinnitus.. as I am thinking about it now.. I can make it 'come back' and hear it again ! But I have trained myself not to focus on it and have not suffered from it for years now.. Sounds a bit woo-woo.. but it works.

[Hidden in reply to queeneee]

Thank you so much for the information. Guess I will have to wait for my hearing test. Strangely enough it is easy to get distracted by other sounds. We have been playing some old familiar sounds on our record player and it’s helped. Will update when I have my results. Best wishes Cheryl

[Kakoburr]

I have had tinnitus develop on Ibrance and fulvestrant! I did not know it is a potential side effect but would believe it

[Hidden in reply to Kakoburr]

My Oncologist said it’s rare and I have to have a hearing test. Will update when I get a result x

[AuntC]

I'm so sorry you've having to deal with tinnitus. I have suffered with it for about 45 years. I have not had one moment of silence since it started. It first started in my right ear when I had sudden hearing loss, which is very common. Then about 25 years ago the buzzing also started in my left ear, no hearing loss or trauma just buzzing. It sounds like a bee buzzing in each ear. I've been to specialists over the years with no answers. I've also tried over-the-counter and online remedies with nothing helping. I would really love to have a nice quiet day. But for now, I've just learned to live with it. If you find something that actually works, please share. Good luck.

Carolyn (AuntC)

[Hidden in reply to AuntC]

Hi Carolyn, I have now booked a hearing test for 24th as suggested by my Oncologist. It’s not easy to ignore but I found that listening to music or watching tv, sewing, keeping busy takes my mind off the awful ringing and buzzing. Yesterday it was like a motor constantly running in my ears. I screamed with frustration. Today it seems just a tiny bit better but it’s there still. I’m not sure what a hearing test will prove. I think I need to see a ENT Consultant but I can’t see that happening in the near future. Thanks for your input and I’m sorry we have to have this conversation. Not so good for our wellbeing.Cheryl

[NikTim in reply to Hidden]

Hi, I know this was a while ago now, but after 7 years on Tamoxifen they’ve swapped me to Letrozole and within DAYS I have developed ‘typewriter’ tinnitus in my left ear, and it’s driving me insane in the evenings and trying yo sleep… I think there IS a link, was wondering what happened with you?

What did scan show?

Did they change meds?

Has it now stopped? Hope so!

Niki x

[sandylo]

I was on letrozole for 7 years after taking arimidex previously. Had numerous side effects but not tinitus

[Hidden in reply to sandylo]

I don’t think my Oncologist is convinced it’s Letrazole either.

[sandylo]

You never know we are all different its possible it could be

[Esragun]

hi, how is your tinnitus now? I have been using lerazole and tinnitus started. I wonder your tinnitus stopped?