Ear ringing help please!

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Hi everyone my name is Roger and I have head and neck cancer. I have had 35 rounds of radiation and 3 rounds of chemo with cisplatin. My last treatment of radiation was April 27, 2015 my last chemo was a week before that. The Drs. Don't see anything on my right tonsil or the roof of my mouth which is great but I have to wait till the end of July to scan my neck to make sure that is clear they feel confidant and so do I but I am a little nervous still. So with that being said here is my questions on June 27 I will be 2 months out of treatment and I have some side affects the one that bothers me the most is ringing in the ears ( almost maddening ) it has been coming and going but now I have had it constantly for 2 days. Please somebody reassure me it is temporary? Or if anything has helped you. Also I see an abbreviation on here a lot  NED What does it mean? With what I have been through I hope I can help someone else get through to.

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  • lornal
    lornal Member Posts: 428
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    NED and ears

    NED - no evidense of disease  :)

    Ringing in the ears.  Tinitis and hearing loss is a side effect of cisplatin.  I have both - since 2007.

    My hearing loss is enough to need hearing aids - that takes care of the ringing during awake time.

    At night, I take bendryl (allergy tablets) or tylenol PM (same allergy med) - 2 - to help me fall asleep with all the noice in my head.

    Lorna

    2007 & 2014

  • wmc
    wmc Member Posts: 1,804
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    Welcome to the H&N Group

    Let me say welcome, and also sorry you need to be here. I only had surgery and did not have radiation or chemo, so outhers will be able to help with the answers you are looking for. If you could give a little more information I know it will help with the answers. Which chemo did you receive, cisplatin,erbitux? Some chemo are known to have hearing problems and even hearing loss. The ringing can be tinnitus, which I have and there is really nothing that can be done. Mine is from age and working around loud machines and it is constant in both ears for me. You can learn to tune it out sometimes but it is always there.

    You might just have a side effect and it can go away, which I do hope it does. Was your Cancer SCC or another, where was it BOT, larynx, sinus/nasal, it will hepl answer your questions. Did you also hace radiation? 

    Sorry for asking and not trying to pry, but it will change how they can answer you and try to give you some hope and even help. I will keep you in my thoughts and prayers, and hope it will go away soon.

    Bill

  • Rogerwp
    Rogerwp Member Posts: 12
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    wmc said:

    Welcome to the H&N Group

    Let me say welcome, and also sorry you need to be here. I only had surgery and did not have radiation or chemo, so outhers will be able to help with the answers you are looking for. If you could give a little more information I know it will help with the answers. Which chemo did you receive, cisplatin,erbitux? Some chemo are known to have hearing problems and even hearing loss. The ringing can be tinnitus, which I have and there is really nothing that can be done. Mine is from age and working around loud machines and it is constant in both ears for me. You can learn to tune it out sometimes but it is always there.

    You might just have a side effect and it can go away, which I do hope it does. Was your Cancer SCC or another, where was it BOT, larynx, sinus/nasal, it will hepl answer your questions. Did you also hace radiation? 

    Sorry for asking and not trying to pry, but it will change how they can answer you and try to give you some hope and even help. I will keep you in my thoughts and prayers, and hope it will go away soon.

    Bill

    Yes wmc it was scc and

    Yes wmc it was scc and cisplatin. I had it on my right tonsil the roof of my mouth and the side of my neck. I am at the point where I can eat but not everything like because mild spices are like POW in your face. Bread I can but I have to chew really well and it helps if it is really soft to begin with. Meat is ok cereal ok. Anyway it is a work in progress. anyway about my hearing if I lost a little hearing I could probably accept but the ringing is all most maddening to me. I need hope.

  • Rogerwp
    Rogerwp Member Posts: 12
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    lornal said:

    NED and ears

    NED - no evidense of disease  :)

    Ringing in the ears.  Tinitis and hearing loss is a side effect of cisplatin.  I have both - since 2007.

    My hearing loss is enough to need hearing aids - that takes care of the ringing during awake time.

    At night, I take bendryl (allergy tablets) or tylenol PM (same allergy med) - 2 - to help me fall asleep with all the noice in my head.

    Lorna

    2007 & 2014

    Hi Lorna are you say hearing

    Hi Lorna are you say hearing aids have helped you with the ringing in the ears? I am interested to hear more about it?

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    hi Roger, and welcome to our

    hi Roger, and welcome to our family!!  i think the rining in ears is a side effect of chemo as many here have had that.  i never had chemo so i have no answers, just wanted to say, you will get some answers here and that I am praying for it to go away.  congrats on being finished with tx.  now you're on the road to recovery!!  God bless you,

    dj

  • hwt
    hwt Member Posts: 2,328 Member
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    hi Roger, and welcome to our

    hi Roger, and welcome to our family!!  i think the rining in ears is a side effect of chemo as many here have had that.  i never had chemo so i have no answers, just wanted to say, you will get some answers here and that I am praying for it to go away.  congrats on being finished with tx.  now you're on the road to recovery!!  God bless you,

    dj

    Welcome Roger

    I had Cisplatin in 2011 followed by ringing in my ears in the mornings. Eventually, i lost most of the hearing in left ear but the ringing went away in right ear and the hearing in that ear is now exceptionally good. A family member who was in the business retired and gave us advice "to see a specialist for your hearing and never have it done by someone that sells hearing aides".  When my husband's hearing went bad from being in the military and running a jackhammer many years, we went to a specialist and he told us hearing aides would not be beneficial.

    Hope yours is a temporary situation.  

  • Rogerwp
    Rogerwp Member Posts: 12
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    hwt said:

    Welcome Roger

    I had Cisplatin in 2011 followed by ringing in my ears in the mornings. Eventually, i lost most of the hearing in left ear but the ringing went away in right ear and the hearing in that ear is now exceptionally good. A family member who was in the business retired and gave us advice "to see a specialist for your hearing and never have it done by someone that sells hearing aides".  When my husband's hearing went bad from being in the military and running a jackhammer many years, we went to a specialist and he told us hearing aides would not be beneficial.

    Hope yours is a temporary situation.  

    Thank you Hwt some times I

    Thank you Hwt some times I just want to cry or something more drastic I know it's early into recovering but I need some indication of when I can expect it to stop if it is going to? I have to be honest and say I think it may drive me mad after awhile. Sometimes I can block it out a lot of times I can not.

  • lornal
    lornal Member Posts: 428
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    Rogerwp said:

    Hi Lorna are you say hearing

    Hi Lorna are you say hearing aids have helped you with the ringing in the ears? I am interested to hear more about it?

    Yes

    Yes - to the point I can actually hear other people and things louder than the head noise.  The cisplatin caused moderate to severe hearing loss in both my ears. 

    Of course, they are expensive - and insurance doesn't cover them.  Certianly go to an ear doc (not your ENT - he's a throat doc - not an ear doc), and audiologist and get your hearing checked.

    Lorna

  • hwt
    hwt Member Posts: 2,328 Member
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    Rogerwp said:

    Thank you Hwt some times I

    Thank you Hwt some times I just want to cry or something more drastic I know it's early into recovering but I need some indication of when I can expect it to stop if it is going to? I have to be honest and say I think it may drive me mad after awhile. Sometimes I can block it out a lot of times I can not.

    Roger

    Your feelings are understandable. Crying is o.k. too. Do you have a script for xanax or ativan? If not, you may want to talk to your doctor about it. My experience is that it is just enough to take the edge off when something like the ringing in your ears causes anxiety but it doesn't keep you from functioning as you might like. No way to sugar coat the fact that this is a depressing situation but you will come through on the other side a stronger and better person for what you have been through. 

  • Rogerwp
    Rogerwp Member Posts: 12
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    Thank you all for the

    Thank you all for the encouragement I have heard some possible good news and I am sure some of you will let me know if you had this experience? I got a call from my ENT office the Drs. assistant returned my call about my ears I explained everything that was going on ringing, clogged, and the meds that was prescribed by another Dr. She told me to come in to check the ears for wax and any abnormalities then if that checks out do a hearing test. She also said from her experience with people in my position and that I have not had hearing problems until 2 months out of treatment the odds are in my favor of having the ringing stop. This is what she has seen since she has been doing this. Now I won't hold her to this but it is encouraging for me to hold on to this slice of hope. Another thing that I did not notice is my daughter says I don't sound right and what she meant is my sinuses sound clogged and stuffy it is hard for me to notice. But I am sure she is right. I know some of you have suggested a prescribition to help keep me calm and I thank you for that but I just stopped taken another drug 6 months ago and I am determined to stay off of it because I am doing well with out it and when I had the feed tube put in that dr told me that the drug I was on cause a small rip in my stomach. I seem to be handling it a bit better now. I will let you all know how I made out at the ENT office tomorrow. Again thank you all.

  • jcortney
    jcortney Member Posts: 503
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    Rogerwp said:

    Thank you all for the

    Thank you all for the encouragement I have heard some possible good news and I am sure some of you will let me know if you had this experience? I got a call from my ENT office the Drs. assistant returned my call about my ears I explained everything that was going on ringing, clogged, and the meds that was prescribed by another Dr. She told me to come in to check the ears for wax and any abnormalities then if that checks out do a hearing test. She also said from her experience with people in my position and that I have not had hearing problems until 2 months out of treatment the odds are in my favor of having the ringing stop. This is what she has seen since she has been doing this. Now I won't hold her to this but it is encouraging for me to hold on to this slice of hope. Another thing that I did not notice is my daughter says I don't sound right and what she meant is my sinuses sound clogged and stuffy it is hard for me to notice. But I am sure she is right. I know some of you have suggested a prescribition to help keep me calm and I thank you for that but I just stopped taken another drug 6 months ago and I am determined to stay off of it because I am doing well with out it and when I had the feed tube put in that dr told me that the drug I was on cause a small rip in my stomach. I seem to be handling it a bit better now. I will let you all know how I made out at the ENT office tomorrow. Again thank you all.

    Sorry you are here

    And I'm even sorrier to say that the ringing in your ears probably will never go away.  I now have the ringing in both ears from the Cisplatin and have been told by three different ENT's (the latest at MD Anderson) that it's here to stay.  The ringing is caused by the death of tiny nerve endings in the ear, they don't regenerate and when enough of them die, it produces feedback that we perceive as ringing.  NONE of the TV sold medications are anything but a way to steal your money.  DON'T BUY THEM!.  Even with their "money back guarantee" you never get all your money back and it's just a rip.

    Now, anxiety and depression.  My suggestion is to rethink your position on Adavan.  It is so mild as not effect anything except your anxiety.  It's actually prescribed for nausea and just happens to be a great relaxer  right before you go to bed.  That was/is my major problem.  Laying there thinking about all the things I was going through and had yet to go through and what the future would be like.  Adavan, takes the stress away and lets me sleep with ZERO effect in the morning.

    Good luck to you with your ENT visit and treatment.  The worst is over and healing will come.

    Joe Cortney

    Dallas, TX

  • Rogerwp
    Rogerwp Member Posts: 12
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    jcortney said:

    Sorry you are here

    And I'm even sorrier to say that the ringing in your ears probably will never go away.  I now have the ringing in both ears from the Cisplatin and have been told by three different ENT's (the latest at MD Anderson) that it's here to stay.  The ringing is caused by the death of tiny nerve endings in the ear, they don't regenerate and when enough of them die, it produces feedback that we perceive as ringing.  NONE of the TV sold medications are anything but a way to steal your money.  DON'T BUY THEM!.  Even with their "money back guarantee" you never get all your money back and it's just a rip.

    Now, anxiety and depression.  My suggestion is to rethink your position on Adavan.  It is so mild as not effect anything except your anxiety.  It's actually prescribed for nausea and just happens to be a great relaxer  right before you go to bed.  That was/is my major problem.  Laying there thinking about all the things I was going through and had yet to go through and what the future would be like.  Adavan, takes the stress away and lets me sleep with ZERO effect in the morning.

    Good luck to you with your ENT visit and treatment.  The worst is over and healing will come.

    Joe Cortney

    Dallas, TX

    Thanks Joe. Well what I

    Thanks Joe. Well what I feared has come true I have hearing loss. So I asked her will the ringing stop? She said I won't say It won't but most likely not. Ok I will deal with it. I ask about hearing aids and she said they make a hearing aid that helps with the tinnitus and corrects the hearing loss. So as of now I am doing my research on these hearing aids and saw a few testimonials That looked promising. But I am still researching. I know Lorna who commented earlier has had success with hearing aids but I don't know if it is this certain hearing aid. Again thank you all. http://www.tinnitushearing.com/tinnitus

  • lornal
    lornal Member Posts: 428
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    Rogerwp said:

    Thanks Joe. Well what I

    Thanks Joe. Well what I feared has come true I have hearing loss. So I asked her will the ringing stop? She said I won't say It won't but most likely not. Ok I will deal with it. I ask about hearing aids and she said they make a hearing aid that helps with the tinnitus and corrects the hearing loss. So as of now I am doing my research on these hearing aids and saw a few testimonials That looked promising. But I am still researching. I know Lorna who commented earlier has had success with hearing aids but I don't know if it is this certain hearing aid. Again thank you all. http://www.tinnitushearing.com/tinnitus

    Hearing loss

    That sucks about the hearing loss.  During my treatment and for a couple months after, I asked every doctor I saw to check my hears because they feeled clogged.  Finally, the ENT said to go see an audiologist.  I was crushed when they said I had moderate to severe hearing loss.  And, it would not get better (woudn't get worse - at least from the chemo.)  The ear doctor at that office that had the audiologist heard that I was upset (I had never met him).  His wife actually called me later that day. Their son had cancer and had cisplatin, and had hearing aids.  She assured me it wasn't the end of the world, and that I should give them a try.  I did end up seeing the ear doctor - when his son lost his hearing, he did a lot of research on cisplatin and hearing loss.  It has been know for 30+ years to cause hearing loss in some people.  I wasn't told this.  Some people they do give the option of a lower dose to prevent that (and allow you to work), or to take some supplement to help prevent the hearing loss.  The doctor said, however, that the treatment I got (the 3 treatments over 6 weeks) was really the best to beat the cancer, and the other options are not as effective.  The doctor also told me he would let me know when they really come up with a solution for tinitus.  Haven't heard anything yet...

    Well, I am surviving the hearing loss.  The reason hearing aids work for the tinitus is because you can hear the real world much better.

    I just got my second pair this year.  The old ones were needing the batteries change so often, and not working to well.  They are expensive, and insurance doesn't cover them (which really sucks).  I think someone mentioned before, you don't want to go to someone whose business is selling hearing aids.  They audiolist at the ear doctor does sell them - at a reasonable prices - several different price points and usually can help you determine the best for you.  I usually get the mid-level.  Since I am a laryngectmee - and rarely speak on the phone, I certainly don't need the best. 

    For nighttime, I have been taking allergy tabllets for 7+ years.  That helps to get drowsy - and get past the noise.

    I'm sure it will all work out.

    Lorna

  • Greg53
    Greg53 Member Posts: 849
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    lornal said:

    Hearing loss

    That sucks about the hearing loss.  During my treatment and for a couple months after, I asked every doctor I saw to check my hears because they feeled clogged.  Finally, the ENT said to go see an audiologist.  I was crushed when they said I had moderate to severe hearing loss.  And, it would not get better (woudn't get worse - at least from the chemo.)  The ear doctor at that office that had the audiologist heard that I was upset (I had never met him).  His wife actually called me later that day. Their son had cancer and had cisplatin, and had hearing aids.  She assured me it wasn't the end of the world, and that I should give them a try.  I did end up seeing the ear doctor - when his son lost his hearing, he did a lot of research on cisplatin and hearing loss.  It has been know for 30+ years to cause hearing loss in some people.  I wasn't told this.  Some people they do give the option of a lower dose to prevent that (and allow you to work), or to take some supplement to help prevent the hearing loss.  The doctor said, however, that the treatment I got (the 3 treatments over 6 weeks) was really the best to beat the cancer, and the other options are not as effective.  The doctor also told me he would let me know when they really come up with a solution for tinitus.  Haven't heard anything yet...

    Well, I am surviving the hearing loss.  The reason hearing aids work for the tinitus is because you can hear the real world much better.

    I just got my second pair this year.  The old ones were needing the batteries change so often, and not working to well.  They are expensive, and insurance doesn't cover them (which really sucks).  I think someone mentioned before, you don't want to go to someone whose business is selling hearing aids.  They audiolist at the ear doctor does sell them - at a reasonable prices - several different price points and usually can help you determine the best for you.  I usually get the mid-level.  Since I am a laryngectmee - and rarely speak on the phone, I certainly don't need the best. 

    For nighttime, I have been taking allergy tabllets for 7+ years.  That helps to get drowsy - and get past the noise.

    I'm sure it will all work out.

    Lorna

    Hi Roger

    Roger,

    Sounds like you have the right approach - checking with docs and experts, and of course the good folks here.  I can relate to what you're going through so here's my GOOD NEWS/bad news experience. 

    I had cisplatin as well.  After 1 treatment I could tell I was having hearing loss.  I had it checked at  that point.  I only made it through 2 treatments of cisplatin due to this loss.  Lost approximately 75% in one ear and 25% in the other.  Ringing started during treatment and has continued through this day (that's the bad news).  Good news is even though I still have persistant ringing, I've totally gotten used to it.  At first it was intolerable.  After 6-9 months it was bearable and presently the only time it is noticeable (even though it has remained the same) is if I'm in a totally quiet environment (camping by myself, etc.).  By the way, I'm 5 years out from treatment.  I'm sure each of us has their own response to this, and maybe I'm just lucky with this side effect, but for me it really is a non-issue these days.  Hopefully that will be the same for you. 

    I know Lorna has had a lot of experience in this area, so her advice is a good one to listen to (plus she's a smart cookie).  I asked my ENT about hearing aids and he said - avoid them until you absolutely need them since one can get dependent on them once you get them and as Lorna pointed out - they aren't cheap.  I've been able to get by without them by halfway learning to lip-read when necessary plus it's a great excuse when "I can't hear my wife" giving me my list of to-do items. To paraphrase Jimmy Buffet - he's losing his hearing, but he don't care what most people say.

    Keep a good and positive attitude - it certainly helps.

    Greg

     

  • avisemi
    avisemi Member Posts: 172
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    Welcome Roger! As you see,

    Welcome Roger! As you see, you found a great group here. :). Sorry about the hearing loss and ringing. :(. My husband had cisplatin and hear the ringing from time to time. He is 4 months out of treatment. 

    You know, we found these past months to be a different journey: there is the relief of been done with the treatment, the joy of making it to the other side, the still cooking after radiation and then the exploring of what is the new normal. Will this or that issue be permanent or not? Learning to live with the side effects. All while folks think and treat you like you are back to your old normal. These can be hard.  Look for support along the way. Give yourself space to deal with the emotions this creates 

    Come here for encouragement!

     

  • Rogerwp
    Rogerwp Member Posts: 12
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    avisemi said:

    Welcome Roger! As you see,

    Welcome Roger! As you see, you found a great group here. :). Sorry about the hearing loss and ringing. :(. My husband had cisplatin and hear the ringing from time to time. He is 4 months out of treatment. 

    You know, we found these past months to be a different journey: there is the relief of been done with the treatment, the joy of making it to the other side, the still cooking after radiation and then the exploring of what is the new normal. Will this or that issue be permanent or not? Learning to live with the side effects. All while folks think and treat you like you are back to your old normal. These can be hard.  Look for support along the way. Give yourself space to deal with the emotions this creates 

    Come here for encouragement!

     

    Thank you all I know

    Thank you all I know something's people say I may not like but I also understand I do need to hear these things cause it is the truth. So other than my hearing I have been doing fluoride treatments at home to protect my teeth which seem to help. Taste buds are coming back but slowly. this is a new one I find myself bringing up phlegm.  at the beginning it was a lot of saliva then after treatment dry mouth which I generally deal with in the morning but now it's phlegm not a lot but. 

  • wmc
    wmc Member Posts: 1,804
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    Rogerwp said:

    Thank you all I know

    Thank you all I know something's people say I may not like but I also understand I do need to hear these things cause it is the truth. So other than my hearing I have been doing fluoride treatments at home to protect my teeth which seem to help. Taste buds are coming back but slowly. this is a new one I find myself bringing up phlegm.  at the beginning it was a lot of saliva then after treatment dry mouth which I generally deal with in the morning but now it's phlegm not a lot but. 

    Tinnitus and Phlegm

    I have tinnitus and did before my surgery. There is no fixing it as others have said. It is damage to the hair in the ear and can not regrow. The nose you hear with it is all in your mind. You are not hearing nose that you should or would normaly hear so your mind creates it. When you lay down to sleep it can be worse as there is no other sounds. I even hear mine with headphones on to listen to music. If there is a lot of nose is seams less but it is always there. Radiation can damage the hair as well and then you get tinnitus, sorry..

    As far as Phlegm that is a good thing. It is your bodys was of cleaning what is in your trach and lungs. I have COPD so I have lots of it and being a neck breather I am very aware of it. Watch the color of it, green and yellow is a sign of infection and most likely need antibiotics and if you have COPD you need a steroid as well. White and frothy is not good and of corse black is the worst. If you breath in dust it will be brown tint or even have specks in it. You might Google Phlegm colors and read up on it. I will very seldom tell anyone to google conditions because there is so much wrong information. So keep with ones like Web MD of from medical places.  http://www.webmd.com/allergies/features/the-truth-about-mucus this one will answer it, page two.

    hope this helps some.

    Bill

  • Rogerwp
    Rogerwp Member Posts: 12
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    wmc said:

    Tinnitus and Phlegm

    I have tinnitus and did before my surgery. There is no fixing it as others have said. It is damage to the hair in the ear and can not regrow. The nose you hear with it is all in your mind. You are not hearing nose that you should or would normaly hear so your mind creates it. When you lay down to sleep it can be worse as there is no other sounds. I even hear mine with headphones on to listen to music. If there is a lot of nose is seams less but it is always there. Radiation can damage the hair as well and then you get tinnitus, sorry..

    As far as Phlegm that is a good thing. It is your bodys was of cleaning what is in your trach and lungs. I have COPD so I have lots of it and being a neck breather I am very aware of it. Watch the color of it, green and yellow is a sign of infection and most likely need antibiotics and if you have COPD you need a steroid as well. White and frothy is not good and of corse black is the worst. If you breath in dust it will be brown tint or even have specks in it. You might Google Phlegm colors and read up on it. I will very seldom tell anyone to google conditions because there is so much wrong information. So keep with ones like Web MD of from medical places.  http://www.webmd.com/allergies/features/the-truth-about-mucus this one will answer it, page two.

    hope this helps some.

    Bill

    Thank you Bill

    Thank you Bill

  • mmt366
    mmt366 Member Posts: 41
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    ear ringing

    Hi Roger, glad to hear you appear to be on the road to recovery and eating solid foods, but sorry to hear about the ear ringing. My squamous cell cancer was in my left tonsil and neck and am 2 1/2 months out from chemo and radiation and recently had my feeding tube removed so I'm testing the waters of 'solid' foods again, but truthfully I lean toward semi solid and softs for now just to put weight back on. I lost 55lbs since my neck disection and TORS surgery back in January. I too had substantial ear ringing that began after my last radiation treatment at the end of April and it lasted until just a few weeks ago, but happy to say it's almost entirely gone now. Our paths sound familiar as I will be heading into Dana Farber for my 3 month check up / PET & MRI on June 30th.  I was ready to throw in the towel and cry uncle but as you can see there is hope, and my hope is your ear ringing begins to fade like mine did.

    best of luck to you today and forever.

    mmt366

  • Rogerwp
    Rogerwp Member Posts: 12
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    mmt366 said:

    ear ringing

    Hi Roger, glad to hear you appear to be on the road to recovery and eating solid foods, but sorry to hear about the ear ringing. My squamous cell cancer was in my left tonsil and neck and am 2 1/2 months out from chemo and radiation and recently had my feeding tube removed so I'm testing the waters of 'solid' foods again, but truthfully I lean toward semi solid and softs for now just to put weight back on. I lost 55lbs since my neck disection and TORS surgery back in January. I too had substantial ear ringing that began after my last radiation treatment at the end of April and it lasted until just a few weeks ago, but happy to say it's almost entirely gone now. Our paths sound familiar as I will be heading into Dana Farber for my 3 month check up / PET & MRI on June 30th.  I was ready to throw in the towel and cry uncle but as you can see there is hope, and my hope is your ear ringing begins to fade like mine did.

    best of luck to you today and forever.

    mmt366

    Thank you mmt the ringing can

    Thank you mmt the ringing can be very annoying. I can block it sometimes. But I am still hoping it lessens and or stops.