I've had two rounds of Cisplatin, and 29 rads. I spoke to the oncologist yesterday and asked about my tinnitus. It seems to be getting worse. He said it was a side effect of the drug, but that I should not compromise the treatment and have the last Cisplatin dose on Monday.

Its currently 2.30am here and I've woken up after an hour's sleep by the ringing. Its driving me nuts. The prospect of it becoming worse and permanent is very distressing.

I know some people have been switched to Carboplatin because of it, but I've been reading Carboplatin causes it too. The oncologist didn't present any options, just recommended we press on with the Cisplatin and deal with the consequences later. Easy for him to say!

Is it just the Cisplatin? I'm reading that the rads cause it too. I don't know. I hope this passes. I'm using an app on my phone with the white noise, that helps a little.

I've had tinnitus for 20 years, from unknown causes, and seems to have worsened from treatments, including Hearing, but many other things medically, can also be the cause, including trauma, ototoxic drugs like Cisplatin, up to 30% of patients in some studies, Carboplatin 1%, and rarely with oxaliplatin, including some antibiotics and other medications can cause ototoxicity. Seems Cisplatin tinnitis occurs from infusions with a higer dose of 50mg, and maybe more when cumulative doses reaches 300mg. It's unclear wether it's permamnt or not, and can be a problem for months, years.

As mentioned, there are apps you can use for "white noise." I use "Sleepbug" to block out the crickets, which seems worse when it's quiet, especially at night. A fan, and or an air conditioner works well too. If it's dose dependent, I don't know if they can reduce the dosage, change the chemo, and or slow down the infusion rate to reduce the toxicity. Cytotoxity, drinking cold water, chewing ice during infusion, helps with mucocitis, hand and foot syndrome, neuropathy, hair loss with other chemo's, like Taxotere, 5-FU, but unsure if it will help with Cisplatin, which kills the hair cells in the inner ear, cochlear, resulting in tinnitus, hearing loss, and can be worse in prior or current head and neck irradation with Cisplatin. Drinking enough water to help flush the kidneys too of the cytocic drugs, as impaired kidney's can also cause tinnitis.

I heard of other supplements that may help, like Gingko Biloba, but check with your doctor. Maybe see an audiologist too, and assume you didn't have any baseline testing before treatment? Don't worry I never did either, and still haven't had my hearing checked, eyes, yes.

I hope this helps.

As far as I know its only the cisplatin that causes hearing issues. Many switch over to the carboplatin. I have seen this problem happen to many patients. I would guess at least 40 people over the past 7 years on this site. Not one of the patients who switched had a problem with carboplatin.

Best wishes!!!

I blame Aerosmith. All cisplatin did was crank up the volume.

Oz,

I apologize for not seeing this earlier. I have not been very active here the last week or 10 days -- been busy managing treatments and side effects and nausea and the rest and just haven't been on here as often as I should.

As you may recall, I had severe tinnitus as a result of the Cisplatin, enough that I felt I was unable to concentrate properly and severe enough that there was some concern regarding my overall cognition. As I think I recorded in my post at the time, I didn't actually know, at the time, that I was not thinking entirely clearly, nor was I responding to people in a manner that gave my oncologist confidence in the treatment. Obviously, I may be an extreme case. Nonetheless, after some significant deliberation, two audiologist consultations, an ENT consultation and a phone call from my oncologist to the doctor at the Cleveland Cancer Center that conducted one of the Cisplatin vs. Carboplatin-Tqxol studies that are often looked at, my oncologist decided to switch me and assured me that her confidence in cure was as high with the switch,

What I do know is that Carboplatin does not incur the same level of Tinnitus side-effect as Cisplatin and I know that since the switch I have seen my hearing loss stabilize and my tinnitus symptoms arrested. Although it is extremely difficult to measure, I am fairly certain that the tinnitus has also faded or reversed to some degree. I was told before Cisplatin that that could be the case and I hope so very much that it is the case for you: that after treatment and over time some of the tinnitus may go away for you naturally.

During the worst of the tinnitus week, my ENT prescribed a steroid that has some history of helping with tinnitus as well as grape seed oil (which has no clinical support but does have some empirical evidence in helping with tinnitus). Did any of bees things actually work? We're not sure, but I am glad that I was perhaps a bit lucky.

Please, please ask your CCC for an audiologist consultation. It may be too late to establish a good baseline, but if this is something that is worrying you, and more importantly, if it is effecting your ability to think, sleep, function, etc., then it is VERY real and your team, at large, needs to be aware. They may have already determined that Carboplatin will not be effective relative to your treatment needs, and I certainly don't want to advocate you do anything that may jeopardize your treatment, but I also know how debilitating the Cisplatin side-effects were for me and would not wish them on you, my down-under-brother-from-another-mother.

Talk to an Audiologist - at least get them thinking now about ways they can start to mitigate the effects -- I don't know if time is a factor, but if it is, get started now.

We're so very nearly done, my brother, and we will, both of us, make it through. I hope this tinnitus is just a minor bump in your life journey -- get started on it now!

I hope you are otherwise well! Please let us know what happens, please keep your head up -- we finish this out this week!

The Hellion

To follow up on this story, I saw the audiologist yesterday. He did a complex range of hearing tests and identified I had some hearing loss at the high end of the frequency spectrum. It can come from a number of causes, including Aerosmith (Nickelback in my case) but chemo is a big cause as well. Given the tinnitus arrived quite quickly, they expect the chemo to be the primary cause in this case.

The audiologist was very good at explaining in relatively understandable detail about tinnitus, the misconceptions and the wild theories and treatment on the internet.

He said they have a conference each year and they have a prize for the most bizarre cure they find on the internet. There are many crazy theories and treatments. It is an extremely misunderstood condition, even among doctors.

There are coping strategies like noise generators (as mentioned above). The noise of rain falling on a tin roof or waves crashing on a beach. It all serves to distract the brain for registering there is a constant tone in my head. Stress makes tinnitus worse, so if you can relax (although its hard to relax with the constant ringing) you can actually reduce tinnitus just by relaxing.

Tinnitus doesn't go away, but it becomes less annoying. Like moving next to a busy road, you don't sleep the first night but 6 months later you can't hear the traffic.

If you are reading this because you have searched on tinnitus caused by chemo induced hearing loss, discuss it with your oncologist during treatment. They may change your treatment. For me I skipped the third Cisplatin dose because of tinnitus.

Some months after treatment finishes and everything settles down you should ask to see an audiologist.

The audiologist said the options for me boiled down to this. I could learn to live with it, or they could put me on a special training course to train me to learn to live with it. Its called Neuromonics and it takes 9 months and $6000. Needless to say I'll be trying the "learn to live with it" option first.

The best thing the audiologist did for me was clarify my understanding of what tinnitus was, what it wasn't, and what my options were to deal with it. I left less anxious about it, and better equipped to deal with it. I know I'm miles in front of my original 2.30am post back in May, where I was really pretty distressed.

I've been living with it for 11 years, 1 month and 6 days...so far but, who's counting?

Oz, very informative post indeed. John lost 10% of his hearing at the top end from Cisplatin. The audiologist said it's the range where women usually speak in. So now if I need to tell him something he doesn't want to hear I lower the register