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  • Cisplatin Hearing Loss

    I'm going to revive this old post from the Chemotherapy section, but also post here as it's factoring into my decision of surveillance versus 1-cycle of adjuvant BEP. As an avid musician (non-professional), I'm concerned with hearing loss and tinnitus. 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

    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.


    About me:

    34 years old
    Nonseminoma - pure embryonal
    LVI negative
    Rete testis positive

    8/5/18 - Felt lump
    8/7/18 - Mass found on ultrasound
    8/8/18 - HCG positive - 47
    8/10/18 - CT chest / abd / pelvis - negative
    8/15/18 - radical orchiectomy
    8/23/18 - Repeat tumor markers pending
    ??? next step ???

  • #2
    If your markers normalize I believe you are clinical stage 1 with with about 30-50% chance of relapse. With 1xBEP there is good chance of cure with this alone. If you were to relapse in surveillance then most likely suggestion would be 3xBEP. You can weigh those odds with the dose-dependency.

    I had 1xBEP and had tinnitus for a few days only. After that I don’t notice any change in my hearing (non musician).
    Last edited by mcintoda; 08-25-18, 08:05 PM.
    Age 31 - Portland, OR
    01NOV16- Pain in right testicle, palpable mass
    13NOV16- R I/O. Markers normal
    27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
    06DEC16 - CT scan clear
    09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
    03JAN17- Ended 1xBEP; start surveillance
    18MAR17-2nd pathology report shows 90% EC , 10% seminoma


    • #3
      I did not get tinnitus or any noticeable hearing loss. I know two people that had 1 x BEP. One had tinnitus for a few weeks and then it went away.

      For one cycle of BEP:
      Cisplatin dose is 20 mg/m^2 x 5 days. So for a 6 foot, 180 lb male, the body surface area is about 2.0 m^2. That comes to 40 mg per day x 5 days = 200 mg total dose of Cisplatin.
      Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

      7/1/2015: felt tiny lump on side of R testicle
      7/30/2015: Ultrasound shows 2 intra-testicular masses.
      7/31/2015: tumor markers normal, CXR clear
      8/5/2015: R orchiectomy
      8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
      8/14/2015: CT abdomen/pelvis clear, Stage 1b
      8/24/2015: started 1 x BEP


      • #4
        I play music and I noticed a change in hearing after BEP * 3, if only slight. Tinnitus has gone away now, but the hearing has dropped a fraction. The clarity is still there, though... Hope it helps!
        July 2016 - Left I/O
        December 2016 - BEPx3
        All clear for 2 years now!

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        • #5
          One more for the anecdotals...I play music and did audio engineering in the past. I had two cycle s of VIP and didn't suffer tinnitus. I think there was some loss, but the treatment coincided with the arrival of a sometimes noisy kid. Hearing loss, if any, hasn't had any effect on my ability to play music
          Aug 2013: vague fevers, exhaustion, weight loss, night sweats
          Sept 2013: became a father
          Oct 2013: diagnosis PMNSGCT, ~5cm x 5cm, AFP: 43 bHCG: 0
          Dec 2013: cycle 1, VIP 3wks
          Jan 2014: cycle 2, VIP 3wks, became allergic to polysorbates
          Feb 2014: AFP 813, bHCG: 0, scrapped chemo
          Feb 2014: upper left lobectomy, 7x6x5 cm tumor, teratoma / adenocarcinoma
          March 2014: AFP 70
          March 2014: AFP 19
          Apr 2014: AFP 11 !!!!
          Feb 2018: AFP & scans clear for 4 years


          • #6
            After 4BEP, I had tinnitus for about a year, which then went away on its own. But after 4TIP and 2HDC, there is always a guy ringing bells inside my head non-stop.
            Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
            Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
            4*BEP AFP 20 end of 4*BEP
            May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
            Surveillance (blood & X rays) and all clear for 24 months
            April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
            4xTIP - almost normal AFP, but started rising again
            2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
            Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
            2 Lung Wedge Resections -


            • #7
              Minimal hearing loss after 4xEP, 20% immediate high frequency loss after HDC (TICE). He was also a musician and originally had hearing for high pitches outside the normal range. All gone. But he still plays guitar today, and he's still alive, vs being dead. There will be improvements for hearing loss in our lifetimes.
              Partner to L
              Bulky seminoma
              Diagnosed 2016. 4XEP, 2xHDC, immunotherapy. No RPLND possible.


              • #8
                I'm a pretty avid orchestral musician who plays in a number of orchestras around town, and I went through 3xBEP earlier this year (Feb - May). Just like you, I was quite concerned about the effects of cisplatin on my hearing given how much my ears mean to me, especially since I had no hearing issues before I started chemo. I'm quite a statistics and data-hungry guy, so I tested myself quite a fair bit throughout chemo w.r.t my hearing.

                My ringing started on Day 5 of the first cycle. It actually caught me by surprise how ungradual it wise - one moment I was fine, the next moment, wham, I had strong ringing in both my ears. It was quite upsetting given how sudden it was, and it took me a good two weeks to get used to.

                Couple of observations:
                - My ringing would reduce (but not go away) over the course of the three weeks of the cycle, then pick-up again in intensity in week1 of the subsequent cycle.
                - The ringing came on the most after the first week of Cycle1. Subsequent cycles increased the ringing marginally.
                - I had no high frequency loss after cycle 1. After cycle 2 and 3 however, I started noticing high frequency hearing loss.
                - After cycle 2 and 3, I also noticed that high frequencies would get distorted/clipped. My wife talking to me would really annoy me (she has a higher pitched voice :P). Occasionally, it would sound kind of muffled too.

                I loved listening to classical music and by the end of chemo, I was quite upset that it just didn't sound the same anymore. A visit to an audiologist confirmed that I had up to 50dB of loss in the higher frequencies.

                BUT, there is good news!

                - Perceptively, my hearing has come back! Music sounds the same again to me, especially classical music. Part of this might be my hearing recovering itself, part of it might be my brain adapting. But man, it's definitely improved.
                - My ringing is still there 4 months out, but it is reduced. You learn to live with it, and it doesn't interfere with your life in any measurable way.
                - I went and played in some chamber music groups, and I was still able to play and enjoy playing. So hooray!

                In summary, the human body is a wonderful, adaptable thing. Your hearing will come back, and you will adjust.

                That being said, I was where you are and had the same dilemma - I was Stage 1B and elected for surveillance. I did that because a) it's not a good idea to speculatively treat this with 1 cycle of chemo. If you undertreat it, you cannot then later do 3/4x BEP since the cancer has become resistant. b) Once detected, there are very good odds of kicking this with 3x/4x BEP. These were what my doctors at Stanford health said to me. YMMV.

                ​Good luck!
                1/10 - Felt mass in right testicle.
                1/11 - LDH: 287 (max = 246), AFP: 16, HCG: 87
                1/18 - Orcheictomy. Non-sem, 80% EC, 15% Teratoma, 5% Yolk. LVI present. pT2, Tentative stage 1B.
                1/29 - Chest CT, Brain MRI, all clear
                2/19: HCG = 5.6, AFP = 13, LDH = 187 (ref = 340)
                2/20: Abdomen CT, 3 large lymph nodes, 0.8, 1.0 and 1.3. Stage 2A
                2/22: 3x BEP start
                2/22 - 4/26:
                AFP: 13, {11, 9, 5}, {4, 4, 3}, {3, 2, 2}
                HCG: 5.6, {2.7, <0.6, <0.6}, {<0.6, <0.6, <0.6}, {<0.6, <0.6, <0.6}
                LDH: 187, {208, 149, 196}, {215, 197, 222}, {277, 270, 240}
                5/3: CT scan, all clear. Lymph nodes <1cm (largest 0.8cm)
                7/5: Repeat MRI, lymph nodes unchanged. Markers still normal
                9/1: Repeat MRI, unchanged


                • #9

                  I'm currently on day 14 of cycle 1 of BEP

                  On day 6 I developed tinnitus very suddenly and it's been with me ever since. Very loud and constant. In addition from day 8 my hearing started getting muffled, almost like I was under water. I kind of feel like I've got soap or water stuck in there somewhere.

                  Anyway, I've been feeling pretty devastated to be honest and my mind runs away with the thought that I might be left deaf at the end of this.

                  I can definitely come to terms with the tinnitus. Many people cope with it after all so I will find a way. But not hearing is pyschologically hard to get over. I have a 3 year old boy and it breaks my heart worrying about it.

                  Reading some of these posts has really lifted my spirits and I just wanted to say thank you for sharing your positive experiences. They give me hope and something to be wishful for. All the other side effects like nausea, bleeding gums, weight loss I know will pass but this really had knocked me down.

                  And to anyone worried about tinnitus, it's not awful. I'd obviously rather not have it but at least I know why it's there. And I'm beginning to think of it as my friend, the reminder (once I'm well) of how lucky I am to be a cancer survivor..


                  • #10
                    Samwise, I can't recall bleeding gums being mentioned as a side effect of chemo. As someone who has lost most of my teeth to periodontitis, I strongly suggest you get to a dentist. They probably won't start treatment until chemo is over, but get on the radar for treatment. It's possible the chemo just triggered the next stage of the disease that was already there.

                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP


                    • #11
                      Thank you Dave

                      Fortunately my cousin is a dentist so I'm on the case! He thinks it's because I'm not salivating properly so I'm trying with the mouthwashes. But you are right with your advice. Very nice of you to suggest.

                      Best wishes.


                      • #12
                        Samwise - I'd be curious to know what your platelet counts were. I'm sure they are checking these regularly during your BEP. Mine were checked weekly. Low white blood cell count wouldn't help either in this situation. Make sure you are using a soft toothbrush, and don't brush too hard.


                        • #13
                          I never had any permanent hearing loss from chemo, just some temporary tinnitus, and on my 4th round of EP, a bizarre "rustling leaves" sound that went away.
                          Young Adult Cancer Survivorship by Steve Pake
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                          Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
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                          • #14
                            I’m a musician. Had tinitus during BEPx3 and as soon as it was all done I was back to normal within a few months. Playing music has always been a major part of my life and I was scared it was permenant but it wasn’t.