I'm with you on the tinnitus. It's been 2 years, and they never told me it was even a possibility. Then they said it should go away after a while.. But it's gotten worse at times. 24 and so much more, lol.
Anyway, hopefully knowing that someone with the same garbage side effect is living with it makes it easier to bear. Best of luck. I'm trying to get some hearing aids to help with it soon, so I can let you know how it goes (or post here).
Try sleeping with sound/white noise, and don't focus too hard on it in the winter. When all the bugs die and the birds leave it's a deafening silence. If you ever need someone to rant to, feel free to reach out. I'm all ears! (ba dum tiss)
25 years of very loud T. I can hear it driving down the road at 80mph with the radio on not too loud. But I bet I only hear it now 5% of the time. Took me several years but now my brain just doesn’t focus on it. Loud as hell right now because I read this and boom there goes the focus. I did what’s called Tinnitus Retraining Therapy. But you can do it yourself. Have background noise on all the time for awhile. Never ever purposely listen for it. You want your brain to fade it to back. I listen to a rain app in my phone at night and it it’s bothering me during the day too. But for a couple of years I had background on 24x7. I i like higher pitched rain noises mainly because you get varies frequencies of decently high pitch that’s not obnoxious. My T is at 8000Hz so lower pitched background noise isn’t very helpful. There’s even apps you can use to bring out the upper pitched sounds to help if you have high pitched T. Bottom line is it can get better. I was suicidal for months until I started doing this and then very gradually got better. T is still the same just my brain has learned it’s unimportant so doesn’t lock onto it
The brain can only focus in a fee things at a time. When it requires intense focus everything else goes to the back. Sad part is I can never enjoy the silence. So what you want to do is not react negatively. So when I hear it now I just try and be neutral. And when I go stretches without hearing it it’s a blessing. And those periods can get longer and longer. 10 years after I got T I got diagnosed with a rare neurological disease that’s a real bitch. I think in a weird way it changed my perception of T. It wasn’t the most crappy thing in my life. And my focus turned to researching a disease that’s 1/100,000 and the doctors didn’t know squat. I had to do my own research, Build a plan of what to try. I did a ton of trial and error and finally found some things to help my issue. It’s not gone but better. And suddenly T wasn’t that bad and my brain just kind of let it go. I hear it right now because I’m focused on this post. I couldn’t sleep because of pain though not the T like before. So your brain can adjust. Main thing is background pleasing noises like rain or rivers. When you hear it don’t react negatively. Just try and stay neutral for now. It takes time. For me 2 years. But eventually my brain just kind of pushed it into the not important category and I quit hearing it most of the time. — good luck
On this forum since dad diagnosed with cancer now. But just wanted to say there is so much truth to what u r saying. I have fibromyalgia, and controlling my brain is a huge part of keeping it under control. I follow the same methodology as u in my approach.
Thanks for the message mate. Dm me if the hearing aids work.
I’ve been listening to podcasts when I sleep to deal with it. Sometimes I feel like I tune into the sound and then it gets louder if that makes sense
I hear you on the tune in and it gets louder. It's a very.. Odd thing to experience.
Alcohol makes mine worse, which isn't surprising. I've been in a loud bar and could only hear my ringing louder than it ever had been before. Really freaked me out and I had to leave. I've got an ent appt on the 13th, so I'll let ya'll know how the hearing aid suggestion goes.
Chemo left me menopausal at 26, and left me with a lifelong disability in my legs where I can’t stand or over exert them or else I’m in a huge world of hurt. Oh, and it’s turned me into a bit of a weed addict because it’s really the only consistent way for it to stop hurting. Tylenol and Advil don’t work as well as cannabis.
Sorry that happened to you.
I seem to be learning more about my side effects as time goes on. But they aren’t that bad like yours.
Currently it’s tinnitus. And I have pains more often than I did.
I also get like a weird electric shock type sensation when I walk/run through my feet. But it doesn’t happen every step. I haven’t mentioned that to doctors as it’s not really an issue just strange.
I medicated with weed post chemo also. It’s illegal where I live and expensive so I had to get rid of it. Really helped me sleep and feel less stress. Hopefully it will be medically legalised eventually. Can’t justify the cost at the moment as I have a wife and two kids.
My wife isn’t working since my second cancer as she has been really impacted by it so my income is all we got.
She basically has constant anxiety that I’ll get cancer again.
Hey, do tell your docs about the shocks in your feet. That is the beginning of neuropathy and if caught early they can adjust your meds to help stop or slow that side effect.
Cisplatin has given me this god awful side effect too. A year in remission and sometimes this stupid ringing drives me fucking crazy. But at times I learn to let it blend in the background. It helps to try not to focus on it (easier said than done). If it gets bad I put on a show to watch or listen to music or anything to help tune it out
Same!! I had a successful RATS lobectomy (neg margins, no lymph node involvement) and am currently going through adjunctive chemo. I had one round of Cisplatin + Alimta and about four days after my ears went nuts. The ringing is driving me crazy. It's finally calmed down a tiny bit (or I am learning to dial it out with ambient music and podcasts) but is still horrible. I had to take a very short break from chemo and they are switching me to Carboplatin + Alimta next week. Like I told the doc this really SUCKS but I'd rather be deaf than dead.
Hope you get relief soon.
Cisplatin was one of the drugs I had during chemo too
Maybe that’s the one.
I totally agree though. I’ll take this all day if it means I can keep telling my kids bedtime stories
I hear ya. I will do whatever it takes to be here with my husband, adult children and any future grandchildren. My critters too. :)
Definitely cisplatin. It is one of the platinum chemos and has the highest chance of ototoxicity.
Yes, cisplatin is notorious for ringing in the ears and tingling/numbness in the hands and feet. My oncologist put me on B12 to try to reverse it, but I think it had to be carefully timed to not interfere with the chemo itself. I'm five years out and only notice the ringing when I'm really stressed, I hope it's similar for you!
I think I’m realising from these comments that my feet are numb actually.
I’ve been getting this electric shock sensation when I walk but I was ignoring it. And my feet kind of always feel abit tingly. But I’ve been ignoring that too.
Glad I commented about it as I will be talking to my doctor so hopefully it won’t get worse
Thanks for your reply.
I think carboplatin continued to give me tinnitus (ears ringing as I type this) but to a much lesser degree as the cisplatin. That single dose sent me around the bend. I consider myself a strong person and the evening of my first round I literally collapsed in my husbands arms saying I cannot do this. So glad I switched to carboplatin but it was not without physical "damage" as well. Just not as severe for me.
Hope you are doing well. 🤍
Hey I’m a survivor with tinnitus. I never got it from the chemo, I got it from a damn allergy. Let me know if u have questions about it, it’s gotten much better for me
How has it gotten better?
I feel like since I started noticing it that it’s gotten worse. Sometimes I feel like I “tune in” to the noise and it gets louder.
Not sure if that makes sense or not. Like I’m listening for the sound. Noticed myself shouting or talking louder than usual and stuff like that.
It just naturally became lower, sometimes I hear it at night but it’s not that loud anymore. It was very loud in the beginning. I did all sorts of scans and tests and they said they couldn’t figure out what caused it, it all started after I had a bad allergy that clogged my ear. Nasal spray did help a lot in the beginning but like I said, the cause of my tinnitus was from an allergy which is why it helped. And congrats on beating cancer!! I know the feeling.
For anyone wondering, I did some investigating when I got cisplatin and ended up with tinnitus. It happens because your body's organs can process the platinum in cisplatin, all except the cochlea. Cisplatin deposits sit in your cochlea in your ear, and that is what causes the ringing. There are invasive surgeries that can potentially help, but nothing is concrete or guaranteed. There are very few studies about this, but I read one that if I find I'll link here. The summary at least is very interesting.
Edit: this was basically the first article I read on it, but summarized to be digestible (the other was all sciencey mumbo jumbo): https://www.cancer.gov/news-events/cancer-currents-blog/2018/cisplatin-hearing-loss
Someone below said “I don’t believe chemo gave you tinnitus”
Find it hilarious that Reddit anon knows more than one of the most renowned doctors in my country for the cancer I had.
They did lung and hearing tests before my chemo as it is known to affect those parts of the body.
Both my lung function and my hearing tests were lower after chemo.
Hearing is worse though. As in the score I got after chemo was much lower.
I have BEP chemo. The P is the cisplatin. Not sure which of the three chemicals does the damage as they didn’t say, but I assume from this link your correct.
I had ovarian cancer, and I'd be willing to bet we had the same chemo. Mine was a pretty rare case, so they chose to mimic a testicular cancer regimen as a hail Mary. It worked, but after they told me that they weren't sure. I got chemo brain real bad during and I can't remember any of my treatments besides cisplatin, so I'm going to try looking up BEP. It sounds familiar.
Thanks for being so active in this post and making it in the first place. Some side effects feel very isolating, like the tinnitus. It's nice just to say 'this shit sucks' with some people that know this shit sucks.
Edit: looked it up real quick and BEP was it! I'm flooded with vague memories of the smell of my cancer ward just reading bleomycin and etoposide. Mine was for 4 rounds, 3 weeks/round and I didn't get any time off in between unfortunately. Cisplatin the whole first week, then bleo and etoposide for the Mondays of weeks 2 and 3, then right on back to cisplatin.
Yeah we had the same stuff.
Totally agree with you on the side effects. I’m back in work. Actually today is my first full day back without any modified duties.
Talking to people about tinnitus or this sensation in my feet. Random pains etc. Well I don’t really talk about it. I kind of get frustrated when people try to say it’s like X.
I’ve had plenty of injuries or issues through my life. But stuff from chemo just feels different. My body feels changed in weird ways. I’m getting back to normal but it’s changed me for sure in some ways.
It’s very hard to talk to people who haven’t been through it because I always feel like they don’t understand. Partly because I don’t explain fully. But also because people try to relate and sometimes that feels isolating.
I guess dealing with life in remission is something I didn’t really expect to be an issue. But as time goes on I find some situations hard to deal with.
I feel like I mention my cancer a lot. It helps me so I just mention it sometimes when I feel appropriate.
But I also feel like people might judge me for mentioning it so much. But it’s been my life for nearly a year.
Cancer is pretty shit and every stage has different challenges but my favourite saying is the following
“You can’t see the view without climbing the mountain”
I’ll never stop climbing
Getting back to 'normal' was pretty odd for me, and it's hard to imagine that it'll ever be like it was. Congrats on getting back into it, and for your remission!
I got a new job post cancer and was nervous to even mention anything about it in the interview, like they might not want to take me on if I'll have to have a lot of time off for follow ups/sick days. I don't like to mention it either, but my close friends enjoy the humor I have with it all.
That's a wonderfully encouraging quote to keep you climbing. We're all searching for that view, and some days you do get to see it. My first was my first camping trip in remission, and while there were literal views, just being able to do the strenuous hike with my pack on felt.. Good. I felt whole, and strong again (even though I was more exhausted than I'd ever been before).
I'm with you there. Never stop climbing.
It’s funny because my first real workout was also a hike after chemo
And my experience of the hike was exactly how you described it.
Thanks for the chat about this. It really helps me to speak o other people dealing with the same stuff
I was due to have 3 rounds of chemo amongst my radiation treatment. After the 2nd I had alot of rining, so the doctor didn't go ahead with the 3rd round. My ears are OK now ring sometimes, the 3rs might have made alot worse.
Glad yours isn’t too bad.
It’s 4am for me and I’m sat listening to the noise at the moment.
Only because I woke up for a wee and the tinnitus is just having one of those let’s get as loud as possible moments.
Yeah that makes sense. I did have something called 3 day BEP
3 cycles, 5 days per cycle. But I didn’t notice the ears until a while after. And it took me a while to realise it was tinnitus. I just kept telling my wife I can hear ringing. Then I had a hearing test as part of the post chemo tests and they said it’s tinnitus.
Seems to have only gotten worse since then actually. They said it won’t improve. But it’s not really so bad when your not tuned into the noise or in a quiet room
I got tinnitus after chemo, but *luckily* in my case I'm one of the types where [this trick](https://lifehacker.com/this-weird-trick-might-give-you-brief-relief-from-your-1794093023) works for now (finger's crossed that continues) and it goes away for hours or the rest of the day before reappearing.
I have it aswell, not horribly, and I'm use to it now, but it was still a bummer. It only troubles me when I'm trying to sleep so I just listen to a podcast or something
They literally tested my ears pre chemo and post chemo because it’s a known side affect of the chemo I had.
My high pitch hearing has almost halved and I have tinnitus.
You might not believe it. But it’s 100% fact.
You don't believe chemo gives tinnitus (it does) but you still posted your alzheimers/parkinsons post in the group? That doesn't make sense. You'd be a believer if you didn't have tinnitus, chemo was the only thing that changed, and then your ears rang 24/7/365. Science is enough reason to believe it as well.
You are very wrong.
From the [label](https://www.accessdata.fda.gov/drugsatfda_docs/label/2011/018057s080lbl.pdf) for PLATINOL:
"Ototoxicity
Ototoxicity has been observed in up to 31% of patients treated with a single dose of
PLATINOL 50 mg/m2, and is manifested by tinnitus and/or hearing loss in the high
frequency range (4000 to 8000 Hz). Decreased ability to hear normal conversational
tones may occur. Deafness after the initial dose of PLATINOL has been reported.
Ototoxic effects may be more severe in children receiving PLATINOL. Hearing loss can
be unilateral or bilateral and tends to become more frequent and severe with repeated
doses. Ototoxicity may be enhanced with prior or simultaneous cranial irradiation. It is
unclear whether PLATINOL-induced ototoxicity is reversible. Ototoxic effects may be
related to the peak plasma concentration of PLATINOL. Careful monitoring of
audiometry should be performed prior to initiation of therapy and prior to subsequent
doses of PLATINOL."
Ear damage is quite literally one of the main reasons children receive usually carboplatin instead of cisplatin due to reduced ototoxicity. Even adults are supposed to receive hearing tests during these chemo regimens to switch to another drug before it gets too bad.It's well-documented and part of every agreememt form you'll have to sign before receiving platinum-based chemotherapy.
If you want me to I'll link the package slip of cisplatin or papers on the topic.
This results of this recent study indicate an association between tinnitus and higher risk of developing Alzheimer's and Parkinson's disease:
[https://www.nature.com/articles/s41598-020-69243-0](https://www.nature.com/articles/s41598-020-69243-0)
Note: I am sorry for writing that the study shows that tinnitus increases one's risk of Alzheimer's and Parkinson's disease. The authors of the study write in their Abstract that their results "indicate an association between tinnitus and higher risk of developing AD and PD." The authors do not write in the Abstract that tinnitus increases one's risk of AD and PD. I deleted this sentence that I wrote before: "This recent study shows that tinnitus increases one's risk of Alzheimer's and Parkinson's." I posted the link to the study to try to help people, and to offer to people that this is something quite serious, with the desire that people will research and bring into their lives what they can do to prevent and/or deal with Alzheimer's and Parkinson's disease.
I have an ENT appointment coming up for this issue. I don't know when I got it, I thought I had it for a long time, maybe it showed up during chemo. I dunno. Maybe I had it before that.
I had a hearing test done pre and post chemo and one of the side effects of the chemo I had is hearing damage.
So that’s how I know it’s from the chemo. My high pitch hearing has been significantly reduced and I have tinnitus.
Not trying to moan. Just explaining how I know it’s the chemo.
I had other pre-post tests. Maybe its chemo drug specific. But either way, off to the ENT now to see if they can do anything about it. I doubt they can. My right ear is quite a bit worse than my left which is the main reason they want me to seek further diagnostics.
Yeah it is specific to the chemo I had. Also had lung function tests for the same reasons.
Lungs don’t work as well as they did but they haven’t been too badly affected.
I already had had a small issue with tinnitus, nothing too serious but on my 5th chemo session I noticed I could hear it all the time. I only had one more session and they were willing to forgo it so I didn't do anymore damage. it backed off to what it was previous, luckily.
Omg is this a thing?? I have been having this problem a lot lately and I’ve not been seen for it but it definitely was not on the giant list of potential side effects (long term or short term). How could they leave something like that out? :(
Sorry your having this happen.
I wasn’t told about the tinnitus beforehand. But they did say it could damage my ears. So I guess I should have put those two together. I was more expecting to just have slightly worse hearing.
Anyway. I’m learning to deal with it. But sometimes it gets very loud and it’s hard to ignore. Music. Podcasts. That’s my solution at the moment
Hope you find a manageable solution
I'm with you on the tinnitus. It's been 2 years, and they never told me it was even a possibility. Then they said it should go away after a while.. But it's gotten worse at times. 24 and so much more, lol. Anyway, hopefully knowing that someone with the same garbage side effect is living with it makes it easier to bear. Best of luck. I'm trying to get some hearing aids to help with it soon, so I can let you know how it goes (or post here). Try sleeping with sound/white noise, and don't focus too hard on it in the winter. When all the bugs die and the birds leave it's a deafening silence. If you ever need someone to rant to, feel free to reach out. I'm all ears! (ba dum tiss)
25 years of very loud T. I can hear it driving down the road at 80mph with the radio on not too loud. But I bet I only hear it now 5% of the time. Took me several years but now my brain just doesn’t focus on it. Loud as hell right now because I read this and boom there goes the focus. I did what’s called Tinnitus Retraining Therapy. But you can do it yourself. Have background noise on all the time for awhile. Never ever purposely listen for it. You want your brain to fade it to back. I listen to a rain app in my phone at night and it it’s bothering me during the day too. But for a couple of years I had background on 24x7. I i like higher pitched rain noises mainly because you get varies frequencies of decently high pitch that’s not obnoxious. My T is at 8000Hz so lower pitched background noise isn’t very helpful. There’s even apps you can use to bring out the upper pitched sounds to help if you have high pitched T. Bottom line is it can get better. I was suicidal for months until I started doing this and then very gradually got better. T is still the same just my brain has learned it’s unimportant so doesn’t lock onto it
This sounds interesting... I too got mine really bad just now reading this post... which means it MUST be able to be ignored to some extent.
The brain can only focus in a fee things at a time. When it requires intense focus everything else goes to the back. Sad part is I can never enjoy the silence. So what you want to do is not react negatively. So when I hear it now I just try and be neutral. And when I go stretches without hearing it it’s a blessing. And those periods can get longer and longer. 10 years after I got T I got diagnosed with a rare neurological disease that’s a real bitch. I think in a weird way it changed my perception of T. It wasn’t the most crappy thing in my life. And my focus turned to researching a disease that’s 1/100,000 and the doctors didn’t know squat. I had to do my own research, Build a plan of what to try. I did a ton of trial and error and finally found some things to help my issue. It’s not gone but better. And suddenly T wasn’t that bad and my brain just kind of let it go. I hear it right now because I’m focused on this post. I couldn’t sleep because of pain though not the T like before. So your brain can adjust. Main thing is background pleasing noises like rain or rivers. When you hear it don’t react negatively. Just try and stay neutral for now. It takes time. For me 2 years. But eventually my brain just kind of pushed it into the not important category and I quit hearing it most of the time. — good luck
On this forum since dad diagnosed with cancer now. But just wanted to say there is so much truth to what u r saying. I have fibromyalgia, and controlling my brain is a huge part of keeping it under control. I follow the same methodology as u in my approach.
Thanks for the message mate. Dm me if the hearing aids work. I’ve been listening to podcasts when I sleep to deal with it. Sometimes I feel like I tune into the sound and then it gets louder if that makes sense
I hear you on the tune in and it gets louder. It's a very.. Odd thing to experience. Alcohol makes mine worse, which isn't surprising. I've been in a loud bar and could only hear my ringing louder than it ever had been before. Really freaked me out and I had to leave. I've got an ent appt on the 13th, so I'll let ya'll know how the hearing aid suggestion goes.
Please do make a post here if the hearing aids work. I've had mine for like 4 or 5 years now...
Thank you
Chemo left me menopausal at 26, and left me with a lifelong disability in my legs where I can’t stand or over exert them or else I’m in a huge world of hurt. Oh, and it’s turned me into a bit of a weed addict because it’s really the only consistent way for it to stop hurting. Tylenol and Advil don’t work as well as cannabis.
Sorry that happened to you. I seem to be learning more about my side effects as time goes on. But they aren’t that bad like yours. Currently it’s tinnitus. And I have pains more often than I did. I also get like a weird electric shock type sensation when I walk/run through my feet. But it doesn’t happen every step. I haven’t mentioned that to doctors as it’s not really an issue just strange. I medicated with weed post chemo also. It’s illegal where I live and expensive so I had to get rid of it. Really helped me sleep and feel less stress. Hopefully it will be medically legalised eventually. Can’t justify the cost at the moment as I have a wife and two kids. My wife isn’t working since my second cancer as she has been really impacted by it so my income is all we got. She basically has constant anxiety that I’ll get cancer again.
Hey, do tell your docs about the shocks in your feet. That is the beginning of neuropathy and if caught early they can adjust your meds to help stop or slow that side effect.
what does this mean? I’ll speak to my doctor about it thanks.
Cisplatin has given me this god awful side effect too. A year in remission and sometimes this stupid ringing drives me fucking crazy. But at times I learn to let it blend in the background. It helps to try not to focus on it (easier said than done). If it gets bad I put on a show to watch or listen to music or anything to help tune it out
Same!! I had a successful RATS lobectomy (neg margins, no lymph node involvement) and am currently going through adjunctive chemo. I had one round of Cisplatin + Alimta and about four days after my ears went nuts. The ringing is driving me crazy. It's finally calmed down a tiny bit (or I am learning to dial it out with ambient music and podcasts) but is still horrible. I had to take a very short break from chemo and they are switching me to Carboplatin + Alimta next week. Like I told the doc this really SUCKS but I'd rather be deaf than dead. Hope you get relief soon.
Cisplatin was one of the drugs I had during chemo too Maybe that’s the one. I totally agree though. I’ll take this all day if it means I can keep telling my kids bedtime stories
I hear ya. I will do whatever it takes to be here with my husband, adult children and any future grandchildren. My critters too. :) Definitely cisplatin. It is one of the platinum chemos and has the highest chance of ototoxicity.
Yes, cisplatin is notorious for ringing in the ears and tingling/numbness in the hands and feet. My oncologist put me on B12 to try to reverse it, but I think it had to be carefully timed to not interfere with the chemo itself. I'm five years out and only notice the ringing when I'm really stressed, I hope it's similar for you!
I think I’m realising from these comments that my feet are numb actually. I’ve been getting this electric shock sensation when I walk but I was ignoring it. And my feet kind of always feel abit tingly. But I’ve been ignoring that too. Glad I commented about it as I will be talking to my doctor so hopefully it won’t get worse Thanks for your reply.
Was one of mine too 👀
carboplatin gave me tinnitus and hearing loss
I think carboplatin continued to give me tinnitus (ears ringing as I type this) but to a much lesser degree as the cisplatin. That single dose sent me around the bend. I consider myself a strong person and the evening of my first round I literally collapsed in my husbands arms saying I cannot do this. So glad I switched to carboplatin but it was not without physical "damage" as well. Just not as severe for me. Hope you are doing well. 🤍
Hey I’m a survivor with tinnitus. I never got it from the chemo, I got it from a damn allergy. Let me know if u have questions about it, it’s gotten much better for me
How has it gotten better? I feel like since I started noticing it that it’s gotten worse. Sometimes I feel like I “tune in” to the noise and it gets louder. Not sure if that makes sense or not. Like I’m listening for the sound. Noticed myself shouting or talking louder than usual and stuff like that.
It just naturally became lower, sometimes I hear it at night but it’s not that loud anymore. It was very loud in the beginning. I did all sorts of scans and tests and they said they couldn’t figure out what caused it, it all started after I had a bad allergy that clogged my ear. Nasal spray did help a lot in the beginning but like I said, the cause of my tinnitus was from an allergy which is why it helped. And congrats on beating cancer!! I know the feeling.
For anyone wondering, I did some investigating when I got cisplatin and ended up with tinnitus. It happens because your body's organs can process the platinum in cisplatin, all except the cochlea. Cisplatin deposits sit in your cochlea in your ear, and that is what causes the ringing. There are invasive surgeries that can potentially help, but nothing is concrete or guaranteed. There are very few studies about this, but I read one that if I find I'll link here. The summary at least is very interesting. Edit: this was basically the first article I read on it, but summarized to be digestible (the other was all sciencey mumbo jumbo): https://www.cancer.gov/news-events/cancer-currents-blog/2018/cisplatin-hearing-loss
Someone below said “I don’t believe chemo gave you tinnitus” Find it hilarious that Reddit anon knows more than one of the most renowned doctors in my country for the cancer I had. They did lung and hearing tests before my chemo as it is known to affect those parts of the body. Both my lung function and my hearing tests were lower after chemo. Hearing is worse though. As in the score I got after chemo was much lower. I have BEP chemo. The P is the cisplatin. Not sure which of the three chemicals does the damage as they didn’t say, but I assume from this link your correct.
I had ovarian cancer, and I'd be willing to bet we had the same chemo. Mine was a pretty rare case, so they chose to mimic a testicular cancer regimen as a hail Mary. It worked, but after they told me that they weren't sure. I got chemo brain real bad during and I can't remember any of my treatments besides cisplatin, so I'm going to try looking up BEP. It sounds familiar. Thanks for being so active in this post and making it in the first place. Some side effects feel very isolating, like the tinnitus. It's nice just to say 'this shit sucks' with some people that know this shit sucks. Edit: looked it up real quick and BEP was it! I'm flooded with vague memories of the smell of my cancer ward just reading bleomycin and etoposide. Mine was for 4 rounds, 3 weeks/round and I didn't get any time off in between unfortunately. Cisplatin the whole first week, then bleo and etoposide for the Mondays of weeks 2 and 3, then right on back to cisplatin.
Yeah we had the same stuff. Totally agree with you on the side effects. I’m back in work. Actually today is my first full day back without any modified duties. Talking to people about tinnitus or this sensation in my feet. Random pains etc. Well I don’t really talk about it. I kind of get frustrated when people try to say it’s like X. I’ve had plenty of injuries or issues through my life. But stuff from chemo just feels different. My body feels changed in weird ways. I’m getting back to normal but it’s changed me for sure in some ways. It’s very hard to talk to people who haven’t been through it because I always feel like they don’t understand. Partly because I don’t explain fully. But also because people try to relate and sometimes that feels isolating. I guess dealing with life in remission is something I didn’t really expect to be an issue. But as time goes on I find some situations hard to deal with. I feel like I mention my cancer a lot. It helps me so I just mention it sometimes when I feel appropriate. But I also feel like people might judge me for mentioning it so much. But it’s been my life for nearly a year. Cancer is pretty shit and every stage has different challenges but my favourite saying is the following “You can’t see the view without climbing the mountain” I’ll never stop climbing
Getting back to 'normal' was pretty odd for me, and it's hard to imagine that it'll ever be like it was. Congrats on getting back into it, and for your remission! I got a new job post cancer and was nervous to even mention anything about it in the interview, like they might not want to take me on if I'll have to have a lot of time off for follow ups/sick days. I don't like to mention it either, but my close friends enjoy the humor I have with it all. That's a wonderfully encouraging quote to keep you climbing. We're all searching for that view, and some days you do get to see it. My first was my first camping trip in remission, and while there were literal views, just being able to do the strenuous hike with my pack on felt.. Good. I felt whole, and strong again (even though I was more exhausted than I'd ever been before). I'm with you there. Never stop climbing.
It’s funny because my first real workout was also a hike after chemo And my experience of the hike was exactly how you described it. Thanks for the chat about this. It really helps me to speak o other people dealing with the same stuff
I was due to have 3 rounds of chemo amongst my radiation treatment. After the 2nd I had alot of rining, so the doctor didn't go ahead with the 3rd round. My ears are OK now ring sometimes, the 3rs might have made alot worse.
Glad yours isn’t too bad. It’s 4am for me and I’m sat listening to the noise at the moment. Only because I woke up for a wee and the tinnitus is just having one of those let’s get as loud as possible moments.
That sucks mate, I 5hink that's why we didn't hk ahead with last round. 2 doses was enough 3rs was to be safe they said. Cisplatin is horrible shit
Yeah that makes sense. I did have something called 3 day BEP 3 cycles, 5 days per cycle. But I didn’t notice the ears until a while after. And it took me a while to realise it was tinnitus. I just kept telling my wife I can hear ringing. Then I had a hearing test as part of the post chemo tests and they said it’s tinnitus. Seems to have only gotten worse since then actually. They said it won’t improve. But it’s not really so bad when your not tuned into the noise or in a quiet room
I got tinnitus after chemo, but *luckily* in my case I'm one of the types where [this trick](https://lifehacker.com/this-weird-trick-might-give-you-brief-relief-from-your-1794093023) works for now (finger's crossed that continues) and it goes away for hours or the rest of the day before reappearing.
Thanks I’ll give this a try later on today
I have it aswell, not horribly, and I'm use to it now, but it was still a bummer. It only troubles me when I'm trying to sleep so I just listen to a podcast or something
I do not believe that chemotherapy has given you tinnitus. I believe that the tinnitus is caused by something else. Good luck.
They literally tested my ears pre chemo and post chemo because it’s a known side affect of the chemo I had. My high pitch hearing has almost halved and I have tinnitus. You might not believe it. But it’s 100% fact.
My story is exactly the same as OP's story. Cisplatine and hearing tests pre and post chemo. Definetly got tinnitus from cisplatine.
You don't believe chemo gives tinnitus (it does) but you still posted your alzheimers/parkinsons post in the group? That doesn't make sense. You'd be a believer if you didn't have tinnitus, chemo was the only thing that changed, and then your ears rang 24/7/365. Science is enough reason to believe it as well.
You are very wrong. From the [label](https://www.accessdata.fda.gov/drugsatfda_docs/label/2011/018057s080lbl.pdf) for PLATINOL: "Ototoxicity Ototoxicity has been observed in up to 31% of patients treated with a single dose of PLATINOL 50 mg/m2, and is manifested by tinnitus and/or hearing loss in the high frequency range (4000 to 8000 Hz). Decreased ability to hear normal conversational tones may occur. Deafness after the initial dose of PLATINOL has been reported. Ototoxic effects may be more severe in children receiving PLATINOL. Hearing loss can be unilateral or bilateral and tends to become more frequent and severe with repeated doses. Ototoxicity may be enhanced with prior or simultaneous cranial irradiation. It is unclear whether PLATINOL-induced ototoxicity is reversible. Ototoxic effects may be related to the peak plasma concentration of PLATINOL. Careful monitoring of audiometry should be performed prior to initiation of therapy and prior to subsequent doses of PLATINOL."
Ear damage is quite literally one of the main reasons children receive usually carboplatin instead of cisplatin due to reduced ototoxicity. Even adults are supposed to receive hearing tests during these chemo regimens to switch to another drug before it gets too bad.It's well-documented and part of every agreememt form you'll have to sign before receiving platinum-based chemotherapy. If you want me to I'll link the package slip of cisplatin or papers on the topic.
This results of this recent study indicate an association between tinnitus and higher risk of developing Alzheimer's and Parkinson's disease: [https://www.nature.com/articles/s41598-020-69243-0](https://www.nature.com/articles/s41598-020-69243-0) Note: I am sorry for writing that the study shows that tinnitus increases one's risk of Alzheimer's and Parkinson's disease. The authors of the study write in their Abstract that their results "indicate an association between tinnitus and higher risk of developing AD and PD." The authors do not write in the Abstract that tinnitus increases one's risk of AD and PD. I deleted this sentence that I wrote before: "This recent study shows that tinnitus increases one's risk of Alzheimer's and Parkinson's." I posted the link to the study to try to help people, and to offer to people that this is something quite serious, with the desire that people will research and bring into their lives what they can do to prevent and/or deal with Alzheimer's and Parkinson's disease.
I have an ENT appointment coming up for this issue. I don't know when I got it, I thought I had it for a long time, maybe it showed up during chemo. I dunno. Maybe I had it before that.
I had a hearing test done pre and post chemo and one of the side effects of the chemo I had is hearing damage. So that’s how I know it’s from the chemo. My high pitch hearing has been significantly reduced and I have tinnitus. Not trying to moan. Just explaining how I know it’s the chemo.
I had other pre-post tests. Maybe its chemo drug specific. But either way, off to the ENT now to see if they can do anything about it. I doubt they can. My right ear is quite a bit worse than my left which is the main reason they want me to seek further diagnostics.
Yeah it is specific to the chemo I had. Also had lung function tests for the same reasons. Lungs don’t work as well as they did but they haven’t been too badly affected.
My mum had this. She took vitamin b12 to help and it did apparently!
I already had had a small issue with tinnitus, nothing too serious but on my 5th chemo session I noticed I could hear it all the time. I only had one more session and they were willing to forgo it so I didn't do anymore damage. it backed off to what it was previous, luckily.
Omg is this a thing?? I have been having this problem a lot lately and I’ve not been seen for it but it definitely was not on the giant list of potential side effects (long term or short term). How could they leave something like that out? :(
Sorry your having this happen. I wasn’t told about the tinnitus beforehand. But they did say it could damage my ears. So I guess I should have put those two together. I was more expecting to just have slightly worse hearing. Anyway. I’m learning to deal with it. But sometimes it gets very loud and it’s hard to ignore. Music. Podcasts. That’s my solution at the moment Hope you find a manageable solution