hearing loss/tinnitus

Hi Iain,

I had 3 cycle BEP just over 3 years ago, so sorry to hear you're having to go through it. Some people sail through it, and so I hope that's true for you.

It seems very early to be suffering any side effect - I did have tinnitus but for me that was probably well into cycle two, and mine was a high-pitched ringing in response to loud noise. After the chemo it subsided over a period of 2~3 months, not quite sure when it stopped, it just got less and less until I forgot to notice it anymore. These days my hearing is back to normal.

Did they do a hearing test before you're BEP cycles? if so they can keep an eye on the hearing change, it's worth mentioning to the oncologist. My experience, based on  sample of 1, is that the tinnitus is temporary.

All the best,

Greg

Hi Greg 

Yes, I had a hearing test on my day 3 and my hearing was normal. 

I have mentioned it to the oncologist who says if it hasn't resolved by my next bleomycin day which is next Tuesday that he might look to reduce the dose for the next big week.

Hi Iain,

Like you I've had the 3 cycles of BEP for Stage 2 b TC, and while I didn't get hearing-loss side effects until the second cycle, mine was definitely caused by the Cisplatin.

In fact in my last cycle of chemo, we gambled to reduce my Cisplatin dosage to try to limit the damage caused to hearing.

I'm now 13-months post-last-cycle, and have engaged my own audiologists to assess me and they've found that my hearing is actually not too bad, but the tinnitus and constant sushing is masking certain sounds. I could purchase tinnitus 'blocker' hearing aids, which train the brain to ignore the noise.

It's very fatiguing for me to have a day of meetings where I have to concentrate on speech, and I work at an Air Force Base, so often have to pause conversations while planes take off.

While none of this may be the case for you, as everyone's outcomes, side effects and level of effect are very personal and individual, it's so very important to remember why you are getting the side effects.

I personally am more than happy to have to change my manner in meetings (and my colleagues and clients understand the issues) or when out and about, if it means I'm Cancer-free. I'd much rather be deaf and healthy, than have an increased chance of mortality but be able to hear well...

I sincerely hope that all goes very well for you, do your best to stay positive, and when you pop out the other side of cycle 3, you'll realise (regardless of the side effects) that it was all worth it.

All the very best,
Cameron

Hi Iain

My treatment was slightly different, CP/EP, but looking back at my blog, I did get tinnitus in my first cycle. I don't recall any hearing loss at all (though I did have problems tracking conversations due to low concentration levels).

It's four months since my treatment finished and I do still get tinnitus, but it comes and goes. It seems related to how tired I am and I kind of use it as an indicator of my level of fatigue.

I'm confident the tinnitus will go in time.

John.

Hello everyone,

Thank you for your insight. It has really helped. 

Today I noticed another ring separate and distinct from the original. This is slightly lower like the sound of a heart monitor flatlining. Is it unusual to have two different rings?

I'm also wondering if anyone knows anything about the possibility of the onset of tinnitus or hearing loss in later life? Are we at an increased risk even if we do come out of chemo unscathed?

Thanks again.

Hi,

I think we all perceive the tinnitus slightly differently, your sounds different to mine.

From the studies I've read about 2 or 3 people out of every 10 experience some tinnitus , and perhaps 1~2 of loss of higher frequencies from Cisplatin chemotherapy. Most seem to recover from the tinnitus after chemo, but it can take up to 24 months for it to go completely. Loss of high frequency hearing if it occurs seems to be more persistent after chemo, but it also gets worse with age any way.

It seems that younger patients experience it more (2003 study by S.Fossa).

Unfortunately the risk of side-effects are some of the price we pay for extending our lives for the next 50~60 years. There is a higher risk of developing tinnitus during treatment, and some risk of it persisting after 2 years.

I'd recommend a discussion with your oncologist as they can judge what is a suitable dose of Cisplatin, or whether Carboplatin (which can cause tinnitus, but less so) is an alternative for you. They can also arrange repeat hearing tests to quantify changes.

Greg

Hi Greg,

I know a lot of time has past,

But can you please refer me to the studies you read?

I am most interested to read those saying it could last for 24 months.

Thank you. 

Hi Ladon

I experienced tinnitus from a single cycle of carboplatin. It was very mild but my ears did feel wierd, but it didn't bother me too much. I think I got it around day 4 or 5. I was told it might fade over about a year, but it didn't. Unfortunately it was made 4 X worse by my first AZ vaccine in Feb.  I've gone from noticing it 10% of the time to 80% of the time.

No vaccine passport for me as I can't contemplate another 4x increase.

I hope your not suffering too badly with it.

Best wishes

G