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3x BEP ... when does the tinnitus end?

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  • 3x BEP ... when does the tinnitus end?

    Hello together,

    greetings from Germany. I am posting in your forum because I think here are more people affected by TC and have had the same chemotherapy like me.

    I was diagnosed in Jan 2018, Stage IIb non seminoma (100% EC) in my left testicle, 2 lymph nodes (biggest 3x2x2cm).
    3x BEP 2nd Feb - 6th Apr 2016
    I did have the typical side effects, they are all gone except two of them:
    brown areas at the skin (at my shin, at my fingers and at my back): I can deal with that, no issues
    tinnitus at both ears.

    The tinnitus came with every BEP cycle:
    1st: at the right ear with swinging noise
    2nd: constant noise in left ear (~1000Hz)
    3rd: constant noise in right ear (gone after few weeks)
    and also lots of high pitched ringing for few seconds during the chemo treatment and 2-3weeks after.

    I feel that the first tinnitus is getting lower and lower. But the 2nd one in my left ear drives me crazy, especially during sleeping time but also while watching netflix. It sounds like the fridge is running all the time. I thought I went away during the 3 weeks connection cure, but it hit me hard (in my remaining nut ;-)) directly the first night after I came back home. It is less than it was during chemo but afterwards it did not get any better

    I have read lots of threads in this forum and also in German threads. Most people say, it will fade away few weeks or months after chemotherapy. But no collection of all experiences in one thread.

    So I would like to start something like that. Can everybody post his experiences with tinnitus after chemo?
    • Which chemotherapy? (1-4 times BEP / EP / other?)
    • Which sort of tinnitus? (constant, few seconds?)
    • When did it end? (x weeks/months after treatment / did it actually end?)
    • What have you done to get it away? (vitamins, drugs, music, nothing?)

    I will start with the collection:
    • Which chemotherapy? 3x BEP
    • Which sort of tinnitus? permanent ringing in both ears (left ear 3 times louder than right ear)
    • When did it end? not yet, but hoping for that
    • What have you done to get it away? ginkgo, vitamin B12, music treatment, Pentoxifyllin (3x 400mg per day)
    Thanks and Regards,
    Max

  • #2
    I had 4xEP really only had tinnitus mildly for a few weeks here and there during and immediately after chemo.

    I did have hearing loss during which was definitely noticeable during chemo. Post chemo, even 2 year later I still think I have slight hearing loss even though I have passed standard hearing tests just fine. Quiet voices with ambient noise is definitely more difficult than pre-chemo.

    This is about the same for both ears btw.
    6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
    6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
    7/7/15: bHCG 56, AFP 42, LDH 322
    7/13/15 - 9/18/15: 4xEP
    10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
    10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
    4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
    4/20/16: RPLND @ IU - teratoma only!
    3/29/2018 all clears up to this date!

    Comment


    • #3
      I had 3xBEP
      I have constant ringing, both ears.
      Still have it 8 years post chemo.
      I haven't tried anything.

      I will say you get used to with time. I don't even notice it when I'm busy, only when I'm quiet. It is however always there if I think about it.

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

      Comment


      • #4
        I had CBOP/BEP (2xcbop 3xbep) finished last June.
        Constant ringing.
        Still ongoing, always ringing in the background. Gets worse when I’m tired!
        I tried vitamins but yo no avail now I just live with it.

        Comment


        • #5
          First off...just for background. I was born with a hearing loss, particularly in higher ranges. I wore hearing aides through childhood. Even before chemo I had occasional ringing on ears that would last a few seconds.

          During 3xBEP the ringing became much more frequent, louder, and lasted longer. It was never constant. In the first 3 months after chemo most of it went away. It took a full year to get back to my pre chemo baseline. However my hearing loss did get worse.

          - Matt
          March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
          March 13th: Left IO 100% Classic Seminoma
          6.3 x 5.1 x 3.8 cm, no invasion of anything
          LDH never fully normalized
          Stage: IS
          Watchful Waiting
          May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
          May 12th: started 3xBEP
          Neupogen during Cycle 2 and 3
          July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
          August 4th: Post Chemo CT/PET scan
          September 4th: Port removed
          July 10th 2018: 4 YEARS ALL CLEAR !

          Comment


          • #6
            nobody else with some experiences (temporary) tinnitus?

            Comment


            • #7
              My son's dissipated 10 months post chemo. He does have 'chemo brain" still at times. But, the ringing is gone for him.
              Son Grant
              dx 12/21/16 at age 17

              BEP x3
              Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
              2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
              Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

              Comment


              • #8
                Originally posted by Trekga View Post
                My son's dissipated 10 months post chemo. He does have 'chemo brain" still at times. But, the ringing is gone for him.

                Sorry to hear that. It must have been very hard to get the testicular cancer diagnosis in this age :-(
                I also suffered from "chemo brain", it was also attested by an ergo therapist. They suggested to do lots of memory workout (there are great apps available) and this helped me (subjective feeling) to get back to my pre cancer baseline. I also read many books during the last weeks. That was not possible during chemo and few weeks afterwards, but now everything is fine.

                ... except that stupid ringing in my left ear. The ringing in the right ear nearly faded away completely. I can only notice in the night if I am at my very quiet toilet room with the door closed.

                @Trekga:
                Which sort of tinnitus had your son? Constant ringing or several attacks like JeskiM69 had?
                Did the tinnitus dissapear from one day to another or did it fade out slowly?

                Comment


                • #9
                  I have 24/7 ringing in my ears post HDC. Coupled with hearing loss from getting injuired in Afghanistan plus hearing loss from chemo. So i have ringing always, some times it gets so bad i have to turn up music to drown out the ringing. Or it wakes me up or keeps me up all nite
                  Jan 2012- U/S mass in Left testicle
                  Feb 2012- I/O performed to remove cancer
                  Mar 1,2012- pathology pure seminoma
                  Mar 7, 2012 PET SCAN stage IIa
                  April 2012 Mayo clinic carbolite.
                  May 2012 carbolite failed, started BEP x3
                  August 7th 2012- BEP complete
                  April 2013 CT/PET show relapse
                  May 2013 RPLND
                  Aug 2013 Relapse again Started VIeP x2
                  Oct 2013 HDC AUTOLOGOUS
                  Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
                  Feb 2014 confirmed false positive all clear FINALLY !
                  Jan 2015 1 year cancer free Pet/CT scan
                  Jan 2016 2 years cancer free "Pet/CT scan
                  Jan 2017 3 years cancer free "Pet/CT scan
                  Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

                  Comment

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