Loss of voice and trouble swallowing

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rmkbrad
rmkbrad Member Posts: 176
in Head and Neck Cancer #1
So my voice is all but gone, and in the last few weeks I have been having more problems swallowing. My neck is so tight from the neck disection I'm hoping. Has anyone had similure problems and if so what can I do to resolve this. I would really like to be able to speak again and also be able to eat. I am on a feeding tube but being able to eat some would be really nice. I have had imrt radiation and breakytherepy radiation along with chemo twice. Everything was going ok but after the neck disection life has been miserable.

Brad

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  • ratface
    ratface Member Posts: 1,337 Member
    #2
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    You are In transition
    To a better time when you will be able to eat and the neck will get better and more flexible. Your voice will return as it goes through a period of frogginess to different degrees. From your past posts I know you have had a very rough time of it. Hard to offer suggestions without knowing more. Neck exercises do help but you may not be strong enough yet. At the very least do what was recommended after surgery, those very simple ones where you walk your fingers up the wall repeatedly. Just summarizing a bit for other posters, You have had IMRT standard radiation regime 30-40 sessions? Then brachythearapy? What types of chemo each time? What was the extent of the dissection, selective or radical? One or both sides? I think most importantly you must measure your current physical condition and do some minor daily activity to better your neck discomfort with exercise, massage, pain meds, and overall concentration on nutrition for stamina and strength. It's a slowwwwww climb Brad and I know it's been hard on you. One foot in front of the other.
  • Fire34
    Fire34 Member Posts: 365
    #3
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    Voice
    Brad
    I lost my voice the middle of my third week of rads, that was apporx after 25 rads, mine werre twice daily. I had to use pen/paper to commnicate with the nurses.
    My docs had swallowing exercises that I tried to do but were difficult at the time, at present I still do stretches, and even now do the swallow exercises. I did not have a disection
    The peg tube was my savior, I was unable to get down the required amount of cans though as it was hard with the twice daily.
    Your voice will return, I am two years post and my voice has returned, volume is a little low and still froggy but do have my voice back. This is just alittle bump in the road
    Wishes & Prayers on the rest of your treatment
    Dave
  • sportsman
    sportsman Member Posts: 97
    #4
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    Voice and Swallowing
    Brad: I hope and pray everything will get better in time for you. I am now as of December 4 five years since being diagnosed with pharyngeal stage four cancer. After a radical neck dissection, thirty five radiation treatments, chemo once weekly my treatment ended in February, 2007. During the time of treatment I did have a feeding tube but still lost fifty pounds off a muscular body. To make a long story short I was completely messed up by the radiation and surgery. I basically never have a good day just days that are better than others. I do eat now if you call it eating and have done this since June 0f 2007. I have lost most of the social functions in my life due to the inability to eat. All food has to be specially prepared and I have not been in a restaurant now in almost five years. I only choke down the food inorder to survive. I have a thyroid that was burned up by the radiation, saliva glands that were fried, a neck has hard as rock from the surgery and radiation and multiple problesm with edema in my neck and face coming from removing all the lymph nodes that were removed. I had my surgery and radiation in a small town and not in a major hospital. You might say I fired these doctors soon after treatment was over and now go to a major teaching hospital for follow-ups. Although I have now lived for almost five years since treatment it has been five very difficult years. Please encourage any you come in contact experiencing this terrible cancer to obtain all the information about treatment and side effects. I feel like I was misinformed and possibly received treatment in such a way that this has left me with all these problems. Doctors tend to defend each other and my doctor now will not say anything about the treatment I received but just shakes her head when she sees how bad I am messed up. God Bless You and I hope and pray it gets better for you.
  • Hal61
    Hal61 Member Posts: 655
    #5
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    Hope you feel better
    HiBrad, as Rick says, you're in a long haul to recovery. I had only a partial neck dissection, but the tightness, like you say, is a major distraction. I take a medication called "gabapentin" for it. The gabapentin is a recent addition. It's non narcotic--but can have side effects, though I've had none--and has helped me a lot, to not notice my neck. The left side is lumpy, hard, and numb, but I just don't notice it with the new med.

    As for food, I recently tried some baby food in a squeezable pouch that a person--runner Patty--recommended. If you can eat anything you might try them, they're tasty, and have a lot of protein, fiber, and sugar--they get those kids hooked early on sugar. You can find them at your Target store.

    I'm about a year and a half from my dissection, and it has slowly gotten better. Hang in.

    best, Hal
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
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    You will continue to recover
    for the rest of your life. The changes will be so finely graded that they are imperceptible on a day to day, or week to week basis. But when you look back a few years from now, or a decade from now, it will amaze you how far you've come, one small bit a a time.

    Be very patient with yourself.

    Pat
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
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    Hi Brad

    The going get really tough right about where you are in your treatment, but just hang in there because it does get better. I too remember when I was having problems speaking because the throat being so sore, the bad thing was I had to give the Sermon that week. I prayed about it and somehow did it but it was a very short Sermon, none the less it surprised me that I was able to do it at all. I got you in prayer my friend that soon things will turn around and start to get better for you.

    Take care
    Hondo
  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
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    Hondo said:

    Hi Brad

    The going get really tough right about where you are in your treatment, but just hang in there because it does get better. I too remember when I was having problems speaking because the throat being so sore, the bad thing was I had to give the Sermon that week. I prayed about it and somehow did it but it was a very short Sermon, none the less it surprised me that I was able to do it at all. I got you in prayer my friend that soon things will turn around and start to get better for you.

    Take care
    Hondo

    Tim, You preached with dry mouth
    I can't believe you were able to preach with dry mouth. I have a pastor friend who had base of tongue cancer. He is one and one half years out of treatment and he has went on disability because he cannot speak for the time it takes to lead worship. His wife is also a pastor and the most he can do is the Communion liturgy if she needs assistance. You are an amazing man of God.

    Debbie
  • jim and i
    jim and i Member Posts: 1,788 Member
    #9
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    Brad, praying for healing
    Jim's voice got very hoarse towards the end of treatment and for a few weeks after. It does get better so hang in there.

    Debbie
  • sportsman
    sportsman Member Posts: 97
    #10
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    jim and i said:

    Tim, You preached with dry mouth
    I can't believe you were able to preach with dry mouth. I have a pastor friend who had base of tongue cancer. He is one and one half years out of treatment and he has went on disability because he cannot speak for the time it takes to lead worship. His wife is also a pastor and the most he can do is the Communion liturgy if she needs assistance. You are an amazing man of God.

    Debbie

    Speaking with Dry Mouth
    This is difficult to do and I can personally see where it would be difficult for a Pastor. I myself teach Sunday school, lead deacons and other meetings at my church that last up to a hour where I do quite a lot of speaking. I have completely burned up saliva glands and my mouth does get very dry the more I speak. I do put a tic tac in my mouth when I am speaking and it helps some with the dryness. Water gags me when I swallow it so taking sips of water does not help. I just pray that God will get me through it any time I speak at length. The dryness sometimes causes me to slurr some words but I realize after all that has happened to me that I am Blessed that I am still alive and able to speak. I am going to press on as long as I can. It took me many years to feel comfortable to speak in front of people and as long as God gives me what voice I have now I am not going to stop.
  • Pam M
    Pam M Member Posts: 2,196
    #11
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    ratface said:

    You are In transition
    To a better time when you will be able to eat and the neck will get better and more flexible. Your voice will return as it goes through a period of frogginess to different degrees. From your past posts I know you have had a very rough time of it. Hard to offer suggestions without knowing more. Neck exercises do help but you may not be strong enough yet. At the very least do what was recommended after surgery, those very simple ones where you walk your fingers up the wall repeatedly. Just summarizing a bit for other posters, You have had IMRT standard radiation regime 30-40 sessions? Then brachythearapy? What types of chemo each time? What was the extent of the dissection, selective or radical? One or both sides? I think most importantly you must measure your current physical condition and do some minor daily activity to better your neck discomfort with exercise, massage, pain meds, and overall concentration on nutrition for stamina and strength. It's a slowwwwww climb Brad and I know it's been hard on you. One foot in front of the other.

    Off Topic, But - -
    those are some comfortable looking four legged buddies, Ratface
  • Pam M
    Pam M Member Posts: 2,196
    #12
    Options
    Hurry Up and Wait
    I took many steps back in the healing process when I had my mrdc, Brad. It really frustrated me, because I assumed after a few days, I'd be back to eating like I did before the operation. Instead, I failed my initial swallow tests, and couldn't pass until after doc told me they would have to put me back on a feeding tube if I didn't pass soon. Even at that, the healing process took much longer than I expected. Don't recall now how long it was before I was eating "normally". I'm still working on range of motion issues a year later, and my swallowing and talking is not as good as it was (but is very good - considering). I believe my throat is not as good as it was before my last surgery. But my throat is doing really good (considering) - really good. Hoping you start to see improvement soon, and it snowballs.
  • Greg53
    Greg53 Member Posts: 849
    #13
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    Pam M said:

    Hurry Up and Wait
    I took many steps back in the healing process when I had my mrdc, Brad. It really frustrated me, because I assumed after a few days, I'd be back to eating like I did before the operation. Instead, I failed my initial swallow tests, and couldn't pass until after doc told me they would have to put me back on a feeding tube if I didn't pass soon. Even at that, the healing process took much longer than I expected. Don't recall now how long it was before I was eating "normally". I'm still working on range of motion issues a year later, and my swallowing and talking is not as good as it was (but is very good - considering). I believe my throat is not as good as it was before my last surgery. But my throat is doing really good (considering) - really good. Hoping you start to see improvement soon, and it snowballs.

    Brad
    Brad,

    No suggestions other than those offered by others here. I know you've had a rough road so far. Just letting you know, I'm thinking about ya and sending positive thoughts your way for a smoother road ahead and hopefully some relief soon.

    Greg
  • rmkbrad
    rmkbrad Member Posts: 176
    #14
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    Greg53 said:

    Brad
    Brad,

    No suggestions other than those offered by others here. I know you've had a rough road so far. Just letting you know, I'm thinking about ya and sending positive thoughts your way for a smoother road ahead and hopefully some relief soon.

    Greg

    Thanks for the support
    Thanks everyone, sorry for the late response. We are in the process of moving from Nevada back to Idaho, well back for me. My wife desided that I should be around my family more and that we should move to Idaho to do that. Any way it has been a year now since I started the second go around of chemo, I had the partial neck disection in March of 2011 where they removed around 44 lymph nodes, I agree that things have gotten better. But all of the sudden my voice will go out and my neck is so tight that I cannot swallow. Another problem I have been having is when I drink liquid it comes out my nose. I do about 1500 callories a day through my tube and was trying to get around 1000 through my mouth, but it has been dificult. Last night when I got home from Idaho "10 hour drive" the first thing my wife says is that I had lost weight. I fought for so long to loose weight in my life now I can't keep it on. I was 295 when I started this night mare now two years later Im a toothpick at 138 and fight like hell to try to stay above 140. Anyway thanks for the input. The last time I talked to my oncologiest we both agreed that unless I really want one or I feel somthing has changed that I should not get another scan, since I have never had a clean scan and when ever I get one and it is possitive or shows somthing it really hits me hard and takes me awhile to get my fighting attitude back on. As for now I tell everyone that I had cancer and not that I have it, I dont care what the scans show I feel I dont have it any more.

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