Cisplatin hearing loss

[skerpracso]

Hello everyone,

I'm new to the forum and diagnosed this month. While awaiting staging tests after my orchiectomy, I would really like to hear from some other people who might shed some light on this:

I'm sure everyone must find one particular aspect of the treatment particularly hard to deal with: For me, the most worrying thing I have come across has been the idea that I might suffer changes to my hearing due to the side effects of Cisplatin such as tinnitus and high FQ hearing loss. I have been playing the violin since I was five, and now as a professional violinist, I'm utterly dependent on my hearing for my work. I'm also not sure about the extent these changes might affect my situation more than the average guy?

I've been warned it would be wise to expect Chemo and before I meet my oncologist, I'd appreciate advice from:


Musicians or music lovers who have experienced hearing side effects.

People who have had these side effects.

Any info on the chances of this occurring, the severity, being temporary/permanent, at what doses, and to what extent.


If anyone has advice on this, I'd really like to know as much as I can so that I know what's going on before I discuss further treatment.

Thanks,
Oscar

[TonyTigger]

First lets hope that you do not need any more treatment but hear is a few thoughts on your post.

• I can not emphasize with you as a musician, wish I could.
• From what I have read, Cisplatin is the secret sauce that has allowed so many of us to be cured.
• I have been reading this forum for two years and yes there is a minority percentage that experience tinnitus including a few severe cases.
• Most seem to be temporary.
• Keep us posted!

[dsparacio]

I am a graduate of SDSU School of Music and and still play avidly. Although everyone is different regarding side effects and the intensity of them, for me the tinnitus was really only noticeable during treatment and was very seldom and not long lasting at all.. Post treatment I have no issue with it.

I will say the the neuropathy in my fingers was much more worrisome as I was not able to push on the strings without pain. It has also become much less intense post treatment. I am able to play like I did before treatment! Hope this helps and hope you do not need to even deal with this.

[Conor1988]

Hi there,

The waiting for staging and test results is absolutely the hardest time in all of this, at least for me. I spent a lot of time worrying about possible outcomes, so I am sorry you are going through this but welcome to this website! It is a great group of knowledgable people.

I am not a musician or music lover at the professional level but I just finished my second of three cycles of BEP chemo and I have had mild tinnitus. It is like what dsparacio said, it seems to be confined to my treatment and manifests as a slight ringing in my ears, usually one at a time, that lasts for a short time and then fades. Overall, it is a rarer symptom and when it occurs it is usually minor and does not last. At this point, try not to think about it until you know if BEP is going to be your treatment course. Then speak to your oncologist. Mine mentioned that if it became a problem, we could alter the dosages. I do not know what that means but just be your own advocate throughout all of this.

That being said, you do not know how treatment is going to effect you until it does. It is hard to predict! For example, most things I read and according to my oncologist, I would most likely lose all the hair on my head by week 6. Well, I am in week six and I have lost a lot of hair, but I still have a little more than a third, I would say. No idea if it is going to fall out or not at this point, but I am going to razor it off as soon as I can at this point. My point is, everyone is different but (judging from your profile picture) you have age on your side, which will hopefully make this all easier.

May I ask what information about your diagnosis do you have? Did you get your tumor markers tested? AFP, bHCG, etc.?

And then, as I am sure you will hear a lot, no matter what, you are going to beat this!

All the best,

Conor

[skerpracso]

Thank you all for your comments!

I will say the the neuropathy in my fingers was much more worrisome as I was not able to push on the strings without pain. It has also become much less intense post treatment. I am able to play like I did before treatment! Hope this helps and hope you do not need to even deal with this.

I will also bear this in mind as I have been trying to get a sense of how much I might be able to carry on working during the treatment.

[skerpracso]

May I ask what information about your diagnosis do you have? Did you get your tumor markers tested? AFP, bHCG, etc.?

Conor

I'm not sure of the exact composition of the tumour. It is a nonseminoma and AFP and beta hCG were both elevated before surgery. Having the blood tested tomorrow morning.

[MamaLovesHerBoy]

My son had very minor tinnitus during chemo. It left and quick as it came.

I used to be a musician and now my daughter plays the same instruments. I have had a pretty bad case of tinnitus for over 18 years. Playing and helping my daughter (flute & picc) the tinnitus hasn't been a problem. Super duper high frequencies have to be spot on to my tinnitus for me to not hear it. The only thing I've noticed when my daughter is in the high range on the piccolo my ears scream for her to stop. I'm definitely less tolerable. However, it could be her lack of intonation too. (not sure this helps, just my personal perspective)

[JeffX]

I had minor ringing in my ears during chemo and some since. It's definitely gotten better since I stopped chemo. I had some hearing issues once I got done with my chemo, but that too has gotten better.

[Smartie]

Hi skerp.

Hope you are ok and coping with all this.

Presumably there's a pretty good chance your tests will come back clear and you won't need chemo. So let's hold out for that, but if not, and you end up having BEP:

I had BEP here in England in 2001-2. These days I have a minor ringing in my ears. I've no idea if it's due to chemo or aging. I also have a slight loss of sensation in my fingers. Again, very minor indeed. I play guitar and it doesn't hinder in any way, though I am uterly unqualified to say how things would be if I were a professional violinist.

One thing that crosses my mind is that here, BEP is usually given in three-day stints, whereas in the States it is given over five. The shorter regimen is, statistically, associated with increase side effects so, given your profession, it may be worth asking if they might consider using the US style regimen.

In response to the discussion on the other thread, I was initially misdiagnosed. The doc examined me and said I had nothing to worry about. He scheduled a routine ultrasound, which at that time took twelve weeks to be scheduled. I went back and used my private health cover to get it quicker. Good thing I did. I think GPs have to deal with such a range of possible ailments and with so many people who are well but worried that they inevitably make incorrect decisions. Not an ideal situation, obviously.

All the best with everything.

Nick

[skerpracso]

I'll be sure to mention the 3 day vs 5 day, if it comes to it!

With the misdiagnosis, it wasn't so much that the GP made an error that I object to. Of course nothing like this is clear cut and doctors can only give their best opinion at the time. However, knowing what I know now about my symptoms, it was extremely dangerous of him to tell me that it was "definitely not cancer" which with hindsight he had no way of being sure about! He could have said "it doesn't look like cancer at this moment but keep watching it because there is a small chance it could be" which would have been fine because I would have then gone back within a month. The second GP I saw also failed to recognise the symptoms when I had one ball three times the size of the other, and a hard mass! She did send me for an ultrasound, but not an urgent one so it was nearly another month before I was diagnosed. She also told me "it was probably nothing".

I'm worried that since this is relatively uncommon, GPs have gone into a mindset where they automatically "reassure" everyone who comes into their surgery with a scrotal complaint.

[mouldyman]

Dear Oscar,
Sorry to hear of your diagnosis.
To give some balance: I finished 3 cycles of BEP (a 5-day regimen) in January for a seminoma relapse and in my case the tinnitus is fairly bad. During treatment and for a few weeks after the end the tinnitus was a nuisance in the sense that I would hear these loud whistles typically in the early evening that would last for 5-10 seconds and then die away. Other than that it wasn't too bad. About a month after finishing BEP however, it became quite strong, whistling constantly, and is still present to the same level two months later. It disrupts my sleep the odd time, and is particularly annoying in the evening or when it is quiet. Various comments:
1. My oncologist told me that they often get cases where the tinnitus is strongest some weeks after the end of the treatment, and then gets better.
2. All the oncologists as well as the ENT doc estimated things would (should!) return to normal after several months (maybe 6-12).
3. The ENT doc told me at the beginning that it is more common to have problems if there was an existing problem - I've always had some problems understanding speech in large or loud crowds
4. Loss of high frequency happened in same ear as the tinnitus; other ear is fine. I can send you a copy of the frequency response diagram/report if you think it's useful.
5. The onset of bad hearing coincided with taking an antibiotic (a fluoroquinolone) for pneumonia, there are reports on the web that it can cause nerve damage and tinnitus. My oncologists had never heard of this, however, and dismissed it as a factor.
6. An oncologist told me, after I asked innocently "How can I get rid of the tinnitus?": "Stop taking
the cisplatin!". So it saved my life, but left something to remember it by.
7. A few others on this site have had tinnitus for life after cisplatin treatment.
8. I did one cycle of carboplatin two years ago and it didn't affect my hearing whatsoever (then again it didnt cure the cancer either!).
9. At difference with other people here, I had no problems with losing feeling in fingertips and so o
n.


So...I don't know what you can take from this. I imagine that if your hearing is already excellent (which I imagine it is), you will be affected less; many people never suffer this side effect; statistically, if you do develop some tinnitus, it should go away after a few months. For a professional musician I can understand this is one side effect you want to avoid. On the other hand, the reason TC is so treatable is largely due to the discovery of this miracle drug, cisplatin. It's something I found easy to forget when I was angry with the tinnitus - that I was alive thanks to the drug. Hope you don't have to face the worst of it, but try to keep positive regardless.

All the best,
Conor

[VAman38]

One question I had about the tinnitus is does it constantly ring in your ear or does it ring while and go away or both? I believe I am experiencing it now after my first full week and had my 2nd Bleo today.

[Davepet]

One question I had about the tinnitus is does it constantly ring in your ear or does it ring while and go away or both? I believe I am experiencing it now after my first full week and had my 2nd Bleo today.

Pretty much all of the above. It depends on the individual. Mine is there 24/7/365/if I pay attention to it, but I easily tune it out if I'm busy doing anything these days.If I see or hear the word(s) tinnitus, ringing, ear, I hear it, loud & strong. I hear it when things are quiet, but it does not stop my sleep ever, even though it seems loudest when I go to bed.

It is something your mind adapts to after a year or so & while it is always there if you look for it, you just do not hear it most of the time. The human mind is kind of wonderful like that, it can tune out the stuff we don't need to hear, even when it is our own body making it happen

Dave

[eodtech2001]

i had some ringing during BEPx3 but it was only noticeable in really quiet settings. I can not say the same thing after HDC. my hearing is destoyed now and i now have to wear hearing aids, mind you i had hearing loss from getting blown up in Afghanistan. I tell people its like trying to hear someone talking through a steel drum now without hesring aids. You should be okay with BEP or EP it will come and go away when you finish trestment

[SoManyQuestions]

I'm going to revive this old post as I'm similarly concerned with hearing loss and tinnitus. Unlike the orginal poster, who I hope is doing well, I'm not a professional, but an avid hobbiest who gets great joy from playing and listening to music. Found this recent paper by reputable group (Dr. Einhorn is a co-author): Comprehensive Audiometric Analysis of Hearing Impairment and Tinnitus After Cisplatin-Based Chemotherapy in Survivors of Adult-Onset Cancer

http://ascopubs.org/doi/pdf/10.1200/JCO.2016.66.8822

Some takeaways:

-The patient population generally represents long term outcomes. Median time from chemo to audiometry was 51 months.
-The dose-to-response relationship was suprisingly similar between the <300mg group and the >300mg group (Figure 3 and Figure A1). My understanding is that for an average-sized male (6ft, 180 lbs), a single cycle of cisplatin is approximately 200mg. (Please correct me if I'm wrong about this.) There is definitely a dose-response relationship presented here, however, for a musician, I suppose the question is whether the difference in the groups would push a stage 1 patient to prefer a single cycle of adjuvant treatment over surveillance, or vice versa. This is a personal decision, and I will hold onto my personal opinion in this post.
-The hearing loss appeared significant in terms of severity and incidence. Of note, the damage is much greater at higher frequencies. (Reference for non-musicians: The frequency of Middle-C on a piano is 260 Hz. Let's round this to 250 Hz or, since the paper uses kilo-Hz, write it as 0.25 kHz. Every octave about middle-C corresponds to a doubling of frequency. Therefore, 0.50 kHz = 1 octave above middle-C, 1.0 kHz = 2 octaves above middle-C, etc.The highest notes I hit on my guitar, which I rarely play because they are so high are between 2.0 kHZ and 2.5kHz)
-The most striking difference I see with respect to dose-response relationship and the severity of hearing loss in the musical range of frequencies (0.25 kHz to 2.0 kHz) is the variance within the dose groups. That is, the trendline is relatively flat, meaning that the average patient who gets 200mg of cisplatin will have a similar severity (measured in decibels) of hearing loss to the average patient who receives 600mg; however, there appear to be more outliers in the higher cumulative dose groups, which account for the slight downward slope of the trendline.
-For higher frequencies the dose-response is more marked
-Subjectively the patient-reported hearing loss is nearly as gloomy as Figure 3 appears on first glance. See Table 1. 90% of patients reported either "no hearing loss" or "a little", 68.7% and 22.1%, respectively. This supports the notion that the higher frequency pitches that are lost are not as functionally noticeable and / or important to patients.
-My sense from the board is that tinnitus is the more of a problem for patients after cisplatin than hearing loss.


My personal interpretation of data from this paper, in context of being a musician and deciding between surveillance versus 1-cycle:
-The likelihood / incidence and average severity of hearing loss in the musical frequency range (0.25 kHz to 2.0 kHz) is similar for patients who receives a cumulative dose of either 1-cycle or 3-cycles of cisplatin. The variance between these groups is higher in the 3-cycle group.


I would love to hear more of your thoughts / experiences about hearing loss and tinnitus. I will edit my response if corrections are brought to my attention. This is not my field of expertise. Please correct me if I'm wrong about average cycle dosing of cisplatin, as much of the analysis is based on this.