Tinnitus due to chemotherapy (cisplatin) and radiation to cure NPC

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NPC_Guy
NPC_Guy Member Posts: 3 Member
edited September 2023 in Head and Neck Cancer #1

I had radiation and chemotherapy (Drug:cisplatin) in 2021 to treat my nasopharyngeal carcinoma.

My treatment ended in Aug 2021. I had side effects that came with the treatment and had handle them well.

However, recently (early Aug 2022), one year after the treatment, i suddenly develop tinnitus and it’s effecting me very badly.

I have spoken to my chemo doctor and he was quite surprised. According to him, tinnitus usually occur during treatment and gets better when treatment is over.

For me, it was quite the opposite. Tinnitus got worse after one year.

I will like to enquire has any one got the same symptoms, as in tinnitus worsen only after 1 year of treatment? Also, is there anything I can do about it?

In addition, is this tinnitus most likely to be caused by the radiation or chemotherapy?

Thanks. 😊

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,276 Member
    edited August 2022 #2
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    Hello NPC, I too have tinnitus from I believe the chemotherapy I had, it is in the background, like a background constant noise, but if I think about it I am aware it is there. I can say it is in the background, or I think part of it is after a while you adapt to it and your mind partially blocks it out. Just my guesses. I always thought it was caused by chemo but looking on the net radiation can do it too. It is my understanding that there is no cure for tinnitus only ways to deal with it. Hopefully, yours is tolerable. Mine is from my first treatment in 2013. It is at a constant level. I think with this problem it can get worse, or better over time, there is no telling. Hopefully, it is something you can work out a solution for and be able to get to a tolerable level. I believe when you tend to hear it at an annoying level try to get your mind on something else. Sometimes that helps. There is some really good info in those links and should help you with the knowledge to deal with this.

    Our treatment is said to be the gift that keeps on giving due to the side effects experienced.

    But it is also the gift that keeps giving life, yes it keeps on giving life because without this intervention we would have died.

    Wishing You the Best

    Take care, God Bless-Russ


    Radiotherapy or the chemotherapy drug cisplatin may cause ringing or other sounds in the ears. This is called tinnitus. It may improve gradually after treatment ends but sometimes it can be permanent. Your cancer specialist will tell you if there is a chance that treatment may affect your hearing.


    Macmillan Cancer Support Link--



    Here is a link from "The American Tinnitus Association" for treatment options--


    And I am adding a couple more links on the subject in case you need them and also because they are from reliable sources--

    Cancer.net Hearing Problems--


    Mayo Clinic-Tinnitus--


  • hollymolly
    hollymolly Member Posts: 5 *
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    The one thing i know for sure - you need to find a good audiologist. Tinnitus might be not connected to the chemotherapy

  • alex11
    alex11 Member Posts: 9 Member
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    Hi NPC and wbcgaruss,

    I also feel the same way as NPC (Tinnitus). I do not have issue during treatment with chemo and radiation

    but after 4 months of treaments, i start having this issue (tinnitus).


    did any of you still have this issue or it is still there permanently?

    Did you notice any hearing loss because of this?


    Thanks,

    Alex

  • alex11
    alex11 Member Posts: 9 Member
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    Hi


    also, Can we test for Tnnitus condition in the hearing test?

    Thanks,

    Alex

  • wbcgaruss
    wbcgaruss Member Posts: 2,276 Member
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    Hello, Alex, I have mild tinnitus from cancer treatment. Radiation and the Platinum based chemotherapy drugs are the culprits.

    First off you might be best off by taking Hollymolly's advice above- The one thing I know for sure - you need to find a good audiologist. Tinnitus might be not connected to the chemotherapy

    I don't think there is any test for tinnitus you just have this constant ringing in your ears and it can be very mild to medium, to very pronounced. I have researched this before and there is no treatment or cure for it. Basically, you get used to it after a period of time and there are ways to deal with it. As far as hearing loss I don't think it is a loss, more of an interference and yes it can affect hearing. I will post a couple links below that should help.

    Take Care, May God Bless & Watch Over You

    Russ



    NEGU (Never Ever Give Up)


  • alex11
    alex11 Member Posts: 9 Member
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    Hi Russ,

    Thank for your quick reply. I am really appreciated it!

    I guess you have this condition (Tinnitus) for a long time (10 year?) and you don't have a hearing loss.

    If so, it is great to know.

    Mine is also mild but I worry that it will develop into hearing loss later.

    I feel i don't have hearing loss and scheduled for a hearing test but worry about the long term effect

    Thanks,

    Alex

  • wbcgaruss
    wbcgaruss Member Posts: 2,276 Member
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    Yes, Alex you are correct I have had tinnitus for about 10 years.

    As far as hearing loss I have some hearing issues and mainly trying to listen and hear what someone else is saying if there is background noise such as talking to someone and a lawn mower is running nearby, I don't catch all the words at times. This hearing loss I have is due to aging and what I was exposed to during my life.

    You may get a hearing loss or let's say a compromise later in life we can never tell. Wear hearing protection when around loud noises or running loud equipment.

    But I don't know if they really count tinnitus as a hearing loss it is a ringing in the ears constantly so it is more of a condition. Still, it affects the hearing. I hope your hearing test comes out well and your tinnitus stays mild. At this point, it probably will stay mild and not change. You will adapt to it and it is one of the things that happens when you are battling H&N cancer. Better than the alternative.

    Take Care, May God Bless & Watch Over You

    Russ

  • alex11
    alex11 Member Posts: 9 Member
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    HI wbcgaruss,

    Did you have hearing test before, during and after treatment?

    I do not understand why they don't ask the patient to have hearing test after treament?

    Only when I complained about tinnitus to my treament Doctor, then he scheduled me for an appointment.

    Thanks,

    Alex

  • Swoosh13
    Swoosh13 Member Posts: 74 Member
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    Hi Alex11, my husband is only 2 weeks into his concurrent rad/chemo (Cisplatin) treatment (7 weekly lower dose Cisplatin vs the 3 larger doses spread out). His dr gave him a baseline hearing test prior to treatment (mild hearing loss in left ear) thus the choice of 7 weekly treatments. They think it will have less of an impact on his hearing at the end while still getting the same dose. So with that he will be getting another hearing test this Monday so they can see if the 2 chemo infusions have had any effect so far. From what we understand they will continue to monitor throughout. Every dr/facility is different. Cannot hurt to ask for a hearing test now. Best wishes.

  • LuvnTN
    LuvnTN Member Posts: 75 Member
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    I am about 19 months post treatment, and my tinnitus is worse now than earlier on. I have noticed, however, that what I eat or drink tends to have some effect on the intensity of my surrounding "field of crickets". I do like my morning coffee.. even though I notice that it does ramp up the volume of the tinnitus. I did a little research, and found that certain foods/drink do affect the levels. Worth a try:

    https://www.neilsperlingmd.com/blog/2018/05/foods-for-tinnitus-what-to-eat-and-what-to-avoid-when-you-have-tinnitus/

  • wbcgaruss
    wbcgaruss Member Posts: 2,276 Member
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    Hi, Alex, I did not have a hearing test before treatment.

    Later on at some point, my ENT gave me a hearing test and it was I think post-treatment and I can't remember if there was any particular reason for it or just random. I have not had another one since then.

    As Swoosh says every doctor and facility is different.

    I think mainly the focus is on getting rid of your cancer and doing it with whatever means necessary. I think for us folks with cancer we just want to see it gone and are not thinking about side effects.

    It would be good if they would tell you of the side effects of your treatment such as tinnitus from the platin drugs of chemo.

    I have seen it where someone was getting after-effects during treatment and they switched them to a different drug.

    All in all, I am not aware of any hard and fast rule that cancer treatment facilities use when it comes to hearing care it is usually an afterthought if they have problems.

    I hope they can figure a way to help you.

    Take Care, May God Bless & Watch Over You

    Russ

  • wbcgaruss
    wbcgaruss Member Posts: 2,276 Member
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    LuvnTN, I noticed the crickets too, I even hear them in the winter, I guess they are winter crickets.

    Take Care, May God Bless & Watch Over You

    Russ

  • alex11
    alex11 Member Posts: 9 Member
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    Hi Russ/LuvnTN


    My Dr told me that it is NOT common to have Tinnitus too far out after treatment (in my case 4 or 5 months)

    Luvn, is your hearing normal despite Tinnitus?

    Thanks,

    Tri

  • wbcgaruss
    wbcgaruss Member Posts: 2,276 Member
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    I would say my hearing for my age is normal except for the tinnitus and it really doesn't bother me because I think we adapt to it being there.

    Take Care, God Bless

    Russ

  • LuvnTN
    LuvnTN Member Posts: 75 Member
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    I had some hearing loss and tinnitus years prior to the treatments; however, the tinnitus is the only noticeable difference afterwards. My tinnitus was much worse afterwards.. to the point of affecting my sleep sometimes.

  • wbcgaruss
    wbcgaruss Member Posts: 2,276 Member
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    Well, LuvnTN, if you had tinnitus before treatment it will be worse if affected by treatment. I had no tinnitus before cancer treatment and had it afterward. So it goes to figure the treatment that you received that has the potential to cause tinnitus will add to your already established condition.

    If tinnitus bothers you in different ways I know there are suggestions out there for many different circumstances such as having trouble sleeping they say to run a small fan for background noise or get one of those noise machines. Just do this search "how to work with tinnitus" and there are lots of suggestions and sites to look at.

    I hope you find the relief you need.

    Take Care, God Bless

    Russ

  • Logan51
    Logan51 Member Posts: 464 Member
    edited September 2023 #18
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    I was NPC, and my Tinnitus didn't start until at least 8 years after tx, and has grown progressively worse. Mine is a relatively high-pitched sound the comes and goes like a pulse. I'm now over 14 years out, have learned to just live with it as part of my new and still changing normal. Have not seen an Audiologist, so appreciate the advice it might be a good idea.

    As for what caused it: Rads damage blood vessels, and it takes time for that damage to manifest with symptoms, so my money is on the Rads as cause.