First time posting!

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Hi all, just wanted to say I've recentry started my 7 week treatment plan - 7 weeks radiation plus three cycles of cysplatin....one infusion given and it's not pleasant! Fatigue, headache, nausea, ringing in ears....seems to be typical side effects? Throat starting to feel a little "thick" from the radiation already but no pain yet.

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  • Dennis from Kansas
    Dennis from Kansas Member Posts: 46
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    sorry your here

    Sorry your here,but this is a good place for information as you go through your treatment.Ive found out so much from all the people on this site,so your in good hands and the people will help in any way they can.   Dennis

  • Georgie74
    Georgie74 Member Posts: 16
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    sorry your here

    Sorry your here,but this is a good place for information as you go through your treatment.Ive found out so much from all the people on this site,so your in good hands and the people will help in any way they can.   Dennis

    Thanks, Dennis. Support is

    Thanks, Dennis. Support is key, for sure. A scary road it is and side effects seem to change on a daily basis! 

  • Georgie74
    Georgie74 Member Posts: 16
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    Cisplatin - tinnitus

    So after reveiving my first cisplatin infusion last monday i now have tinnitus on and off with some muffled hearing. I know this is a side effect but how worse can it get? I'll be letting the doc know about it when I can. 

  • Georgie74
    Georgie74 Member Posts: 16
    edited July 2017 #5
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    Cisplatin - tinnitus

    So after reveiving my first cisplatin infusion last monday i now have tinnitus on and off with some muffled hearing. I know this is a side effect but how worse can it get? I'll be letting the doc know about it when I can. 

  • caregiver wife
    caregiver wife Member Posts: 234
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    Welcome, Georgie

    Sorry you are going through this.  I have no knowledge on your question.  Others do, and I am sure you will be getting a response soon.  Just wanted to say hello.  Many here will tell you it goes much faster looking back than going in.  Wishing you all the best,

    Crystal

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    welcome

    G74,

    Welcome to the H&N forum, sorry that you are here, but it sounds like you are in it.

    Your hearing issues should be brought to the attention of your team immediately.  There are steps they can take to lessen the damage, as it can grow worse.

    Drink lots of water and swallow often, that was the best and easiest suggestion I got from this forum. Also, keep up the nutrition.  Those 2 things can make all the difference. Additionally, nausea meds, pain meds, salt and soda, creams, etc.

    The summer of 2017, different but doable.

    Matt

  • Georgie74
    Georgie74 Member Posts: 16
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    Welcome, Georgie

    Sorry you are going through this.  I have no knowledge on your question.  Others do, and I am sure you will be getting a response soon.  Just wanted to say hello.  Many here will tell you it goes much faster looking back than going in.  Wishing you all the best,

    Crystal

    Thank you! 

    Thank you! 

  • Georgie74
    Georgie74 Member Posts: 16
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    CivilMatt said:

    welcome

    G74,

    Welcome to the H&N forum, sorry that you are here, but it sounds like you are in it.

    Your hearing issues should be brought to the attention of your team immediately.  There are steps they can take to lessen the damage, as it can grow worse.

    Drink lots of water and swallow often, that was the best and easiest suggestion I got from this forum. Also, keep up the nutrition.  Those 2 things can make all the difference. Additionally, nausea meds, pain meds, salt and soda, creams, etc.

    The summer of 2017, different but doable.

    Matt

    Matt, different but doable...

    Matt, different but doable....sounds like my new mantra! I'll make sure my team knows about the hearing issues as soon as I can. Thanks for the advice! I have a peg tube fitted just in  case but I'm a tiny thing to start with - 115 lbs so I'll use that feeding tube for sure when necessary. 

  • corleone
    corleone Member Posts: 312 Member
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    Georgie74 said:

    Matt, different but doable...

    Matt, different but doable....sounds like my new mantra! I'll make sure my team knows about the hearing issues as soon as I can. Thanks for the advice! I have a peg tube fitted just in  case but I'm a tiny thing to start with - 115 lbs so I'll use that feeding tube for sure when necessary. 

    I am among the few “chosen”

    I am among the few “chosen” who had hearing loss caused by cisplatin, to the point that the 3rd round of Cisplatin had to be canceled. The adjuvant chemo (post concurrent radiation with chemo) was changed too, it was switched to carboplatin (a “platin” derivate, with less side effects, ototoxicity included) plus 5FU.

    Cisplatin affects the perception for higher pitched sounds, that’s why you are hearing everything muffled. I don’t think there is any efficient treatment for that, when it’s gone it’s gone. What you can do afterwards (IF hearing loss gets worse), is to consider wearing hearing aids, as I do. Helps, but are ridiculously expensive (that’s another story).

     

    You can also ask for a hearing test asap, to see if there is more decline in hearing. The test should be done as a baseline, before the first treatment, but it’s useful even after the first round. 

  • Georgie74
    Georgie74 Member Posts: 16
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    corleone said:

    I am among the few “chosen”

    I am among the few “chosen” who had hearing loss caused by cisplatin, to the point that the 3rd round of Cisplatin had to be canceled. The adjuvant chemo (post concurrent radiation with chemo) was changed too, it was switched to carboplatin (a “platin” derivate, with less side effects, ototoxicity included) plus 5FU.

    Cisplatin affects the perception for higher pitched sounds, that’s why you are hearing everything muffled. I don’t think there is any efficient treatment for that, when it’s gone it’s gone. What you can do afterwards (IF hearing loss gets worse), is to consider wearing hearing aids, as I do. Helps, but are ridiculously expensive (that’s another story).

     

    You can also ask for a hearing test asap, to see if there is more decline in hearing. The test should be done as a baseline, before the first treatment, but it’s useful even after the first round. 

    Thanks for the advice - I'll

    Thanks for the advice - I'll be on to it Monday with my team. 

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
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    As you progress down the

    As you progress down the treatment road be aware that many of us ended up back in the infusion center getting infusions of saline drip.  There is nothing wrong with this, and it will help you considerably in avoiding dehydration as you lose interest in drinking and eating.  Your oncologists can help with the scheduling, but it usually falls to their PA or assistant.  Towards the end you may end up doing that daily, and it helps a considerable amount, especially in dealing with side-effects.  Anything and everything that will help you thru the next seven weeks should be an option.  I also found my infusion team was loaded with very knowledgeable people with decades of practical experience.  They probably know of something that will help, but you may need to ask.  

  • Chicklette
    Chicklette Member Posts: 225
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    Cisplatin

    Definitely tell your team about the tinnitus.  My husband had two infusions of cisplatin and was switched to carboplatin due to hearing concerns.  (He was on a low dose once a week).  His hearing issues resolved after he switched.  Good luck in your treatment!

  • Georgie74
    Georgie74 Member Posts: 16
    edited July 2017 #14
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    Cisplatin

    Definitely tell your team about the tinnitus.  My husband had two infusions of cisplatin and was switched to carboplatin due to hearing concerns.  (He was on a low dose once a week).  His hearing issues resolved after he switched.  Good luck in your treatment!

    That's really good to hear

    That's really good to hear his hearing issues resolved after switching - I must say it's disconcerting having this as a side effect and a bit worrying it might be permanent. We shall see! Thanks. 

  • Georgie74
    Georgie74 Member Posts: 16
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    As you progress down the

    As you progress down the treatment road be aware that many of us ended up back in the infusion center getting infusions of saline drip.  There is nothing wrong with this, and it will help you considerably in avoiding dehydration as you lose interest in drinking and eating.  Your oncologists can help with the scheduling, but it usually falls to their PA or assistant.  Towards the end you may end up doing that daily, and it helps a considerable amount, especially in dealing with side-effects.  Anything and everything that will help you thru the next seven weeks should be an option.  I also found my infusion team was loaded with very knowledgeable people with decades of practical experience.  They probably know of something that will help, but you may need to ask.  

    Thanks for this. My team

    Thanks for this. My team already have me scheduled for twice a week fluids so that's good to know they can increase that. Thanks for the advice! 

  • RobbT
    RobbT Member Posts: 17 Member
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    Cisplatin and ears

    i found everyone lisping. And told my doc. He had a hearing test right away. Then said we are switching to Erbitux of wich I had 3 weekly infusions. It made me get a rash and pimples like A teen But they said rash means it's working. 7 weeks post tX now. My hearing has improved but not all. 

  • Georgie74
    Georgie74 Member Posts: 16
    edited July 2017 #17
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    RobbT said:

    Cisplatin and ears

    i found everyone lisping. And told my doc. He had a hearing test right away. Then said we are switching to Erbitux of wich I had 3 weekly infusions. It made me get a rash and pimples like A teen But they said rash means it's working. 7 weeks post tX now. My hearing has improved but not all. 

    That's funny you should say

    That's funny you should say about the lisping - I'd noticed that too and felt that I was lisping particularly badly!