tongue and neck , throat

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cheeno
cheeno Member Posts: 1
edited March 2014 in Head and Neck Cancer #1
I am 46 years old and have never smoked a day in my life. But I have Stage IVa Supraglottic Carcinoma (base of tongue, vallecula, and into epiglottis). Also into lymph nodes on both sides of neck. I have had 35 weeks of radiation and am still finishing my 4 months of chemo (4 sessions left). It has been 26 days since my last radiation treatment and I still cannot swallow any liquids or any food. I am still coughing up a lot of stuff and saliva. I am wondering when I will be able to eat again and have some relief from coughing all the time. It wakes me up at night and I still cannot get a good night's sleep. I am on a feeding tube through the top of my intestine (J tube) due to my acid reflux. Am tired of NOT EATING and very frustrated. Anybody out there that has anything to share I would be greatly appreciative. Thanks.

Comments

  • teebird
    teebird Member Posts: 2
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    Cheeno, I'm with you - my husband had scc base of tongue, lymph nodes, etc - feeding tube, unable to swallow, phlegm, etc. Each person recovers at his/her own rate; some heal quickly, some slowly. My husband is one of the slower healers - 15 months out of radiation, still on peg, no saliva and ton of mucus. The important thing is 1. be patient and rejoice in little steps and 2. BEG for help - demand from your doctors help in healing, whether that's a referral to a speech therapist to assist in regaining swallowing, or meds to replace saliva. Also ask for an honest assessment of your radiation damage and what recovery you can expect. Hang in there - things get better - you've kicked the cancer out of your system, now have work out the best recovery for yourself.
  • marlaj
    marlaj Member Posts: 3
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    teebird said:

    Cheeno, I'm with you - my husband had scc base of tongue, lymph nodes, etc - feeding tube, unable to swallow, phlegm, etc. Each person recovers at his/her own rate; some heal quickly, some slowly. My husband is one of the slower healers - 15 months out of radiation, still on peg, no saliva and ton of mucus. The important thing is 1. be patient and rejoice in little steps and 2. BEG for help - demand from your doctors help in healing, whether that's a referral to a speech therapist to assist in regaining swallowing, or meds to replace saliva. Also ask for an honest assessment of your radiation damage and what recovery you can expect. Hang in there - things get better - you've kicked the cancer out of your system, now have work out the best recovery for yourself.

    teebird, thanks for your reply to cheeno. My husband finished chemo and radiation 7 weeks ago, for stage 4 tonsil cancer which had spread to the lymph nodes in his neck. He, too, was never a smoker, so it's mystery as to how he got this. He experienced many of the things cheeno and your husband did, and are still experiencing. He is very frustrated that the healing process isn't going more quickly. I feel frustrated for him. I think he looks much better, and he's gained back some weight, but is still on the peg tube. The swallowing is slow to come. But you are right...things have gotten much better from where we were 7 weeks ago, and he just needs to keep his eye on the future. I hope you are taking care of yourself, too, as I know how hard this can also be on the caretaker/loved ones! Hang in there!
  • tavz77
    tavz77 Member Posts: 10
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    Hang in there Cheeno!.... I had stage 4 scc in left tonsil...am about 1 1/2 years out....last radiation was Feb 9 05,,,still have dry mouth and thick saliva...takes time...slow but sure...keep a positive attitude and you will be good in a few month...i had 28 radiation treatments and left neck dissection...elected not to do a feeding tube and lost 120 pounds but got through it,,,,hang in there and keep the faith....
    Rich
  • garyr
    garyr Member Posts: 27
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    I finished my radiation, 63 treatements, 6 1/2 years ago and still have the dry mouth. (I also never smoked and had stage 1V at the base of my tounge,which spread to the lymph nodes). Biotene gum works very well for me when I am exersicing or just away from a source of water for a while. I am 65 and play a lot of tennis and hike.

    Just hang in there and it will get better, it took me about a year.

    Gary R
  • tracy_csn
    tracy_csn Member Posts: 15 Member
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    I am 56 yr old male who was diagnosed with Stage IV cancer in left tonsil in Sept 2004. Never smoked. Cancer discovered in single lymph node. Had left radical neck dissection, followed by 39 sessions of radiation coupled with cisplatin synergistic chemo. Had a peg feeding tube and I am glad that I did. Lost about 35 lbs which I have not regained and don't intend to. Effects of radiation made it hard to swallow and junk had to be cleared from my throat. But worse effect for me was that radiation eliminated any taste whatsoever for months. As a result I stayed on the feeding tube for about four months after my radiation treatment ended. When I could start eating solid food, it had to be soup or sauces, very wet. I was very distressed in not being able to taste, or as it did return to have my taste be limited.
    All that said, it is now 1 1/2 yrs since last treatment. All taste is back, and I love being able to eat again. I still have significant neck pain (from muscle changes due to surgery) and dry mouth (for which I carry bottled water and Biotene mouth gel, which I love...).
    I know everyone keeps saying to be patient and time will help. And it will, so take one day at a time, do lots of physical therapy and positive visualization, and get involved in a survivor's support group. There is a head and neck group in my area, and we meet monthly, and it does me a world of good. I would recommend that you find one near you.
  • gary0001
    gary0001 Member Posts: 1
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    Has anyone had Nose/Sinus area cancer??? My husband has never smoked either and we just finished 6 weeks of radiation--still having problems with congestion, dry mouth and choking at night from drainage. Anyone?????
  • Eugene389
    Eugene389 Member Posts: 9
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    gary0001 said:

    Has anyone had Nose/Sinus area cancer??? My husband has never smoked either and we just finished 6 weeks of radiation--still having problems with congestion, dry mouth and choking at night from drainage. Anyone?????

    Hello,

    I didn't have the nose/sinus cancer. Mine was in the throat area, but I did have dry mouth and plenty of thick mucous.

    What I discovered mostly on my own was that if I gargled with luke warm water gently and let it drop down my throat and spit it out I would loosen all the thick mucous. I would do this repeatedly until I was satisfied that I had gotten as much of the mucous out as I could.

    Then I took Biotene mouthwash (designed for dry mouth and found at any reputable pharmacy-they have gum and a gel too, but to this day I only use the mouthwash) and coated the inside of my mouth with this and made sure I breathed through my mouth-thus keeping the moisture in.

    I would repeat the process frequently but as I healed up over time I would make less trips to the bathroom for a rinse.

    Also, if you try this method get the biotene that is not flavored with mint or spearmint. I find that stings more than the plain biotene.

    I'm nine years out and cancer free and remember that it was slow at first noticing any improvement, but eventually you could measure the improvement. Don't fight it psychologically, just accept it and over time you will see improvement.

    You're both in my prayers, God Bless.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
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    I'm with you, Cheeno! Tired of not eating. I did smoke, which is immaterial except that I have only myself to blame, but I have had about half of my tongue and I don't know how much of my right neck removed, along with the lymph nodes on that right side, went through chemo and 33 radiation treatments and all of the problems that people talk about and as a Type A type, really was ahead of the game coming out of surgery and going into recuperation, or so I thought... and then reality set in. I am still not eating in public, although my radiation therapy ended in January and it is now the first of Sept... I can drink anything, I eat soups, I eat mashed anything...but I want to be normal...it may be that this will never happen. Bread and beans and other things still stick to the roof of my mouth and my tongue isn't big enough or powerful enough to get up there and knock it down, to be blunt. One problem I found was that I set the end of treatments as goals. That is, I figured when radiation ended, when chemo ended, things would start picking up right away. Just ain't so. Those treatments are designed to poison you, as you know, and it takes time AFTER them to recover FROM them. So I would suggest that you not quit trying to drink, to eat, if your doctors advise you can, but that you also realize, you need time to heal from your cure. You really do. The frustration is a ****, I know. Take it slow, but as fast as you can. Be patient but be urgent. And remember that you need time to heal from your cure. Best wishes.
  • grayharrin
    grayharrin Member Posts: 3
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    tracy_csn said:

    I am 56 yr old male who was diagnosed with Stage IV cancer in left tonsil in Sept 2004. Never smoked. Cancer discovered in single lymph node. Had left radical neck dissection, followed by 39 sessions of radiation coupled with cisplatin synergistic chemo. Had a peg feeding tube and I am glad that I did. Lost about 35 lbs which I have not regained and don't intend to. Effects of radiation made it hard to swallow and junk had to be cleared from my throat. But worse effect for me was that radiation eliminated any taste whatsoever for months. As a result I stayed on the feeding tube for about four months after my radiation treatment ended. When I could start eating solid food, it had to be soup or sauces, very wet. I was very distressed in not being able to taste, or as it did return to have my taste be limited.
    All that said, it is now 1 1/2 yrs since last treatment. All taste is back, and I love being able to eat again. I still have significant neck pain (from muscle changes due to surgery) and dry mouth (for which I carry bottled water and Biotene mouth gel, which I love...).
    I know everyone keeps saying to be patient and time will help. And it will, so take one day at a time, do lots of physical therapy and positive visualization, and get involved in a survivor's support group. There is a head and neck group in my area, and we meet monthly, and it does me a world of good. I would recommend that you find one near you.

    My ENT prescribed Evoxac and this did put some moisture in my mouth, has anyone found any therapy for your jaws after radiation, I completed mine 2.5 years ago i still cannot open my mouth more than a 1/2 inch
  • Happymamabear
    Happymamabear Member Posts: 5
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    Hang in there cheeno.. My husband is 3&1/2 years out from his last treatment.. Chemo and radiation. He also had the feeding port and he also was stage four... which totally panicked me because I lost both parents to cancer a few years ago.. one stomach..throat and the other pancriatic, my husband and son had the mouth cancer at the same time one had surgery and lost a quater of his tongue (my 24 year old son) and my husband had it in the roof of his mouth and tonsils he had radiation and Chemo. It seemed like a long haul but they are both better and I now have a new grandson from my son. Things look up eventually. But take care of yourself, I would up in the hosp. and almost died from A bad infection that I had and did not know it because I was taking care of everyone else. I was over a month to recovery and Paid the price for not taking care of myself as well as them.
  • Linda Rendleman
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    14 years out and worried about a return

    In the past month I have had trouble swallowing and my doctors say it is gerd.  However the change of diet and the PPI medication they gave me is not helping much.  Yes, I do belch more and if I sleep upright it helps some  (typical way to relieve symptoms of gerd), but I also know that head and neck cancer (mine was from my tonsil) can return  Is there any information you can share with me on the rate of head and neck cnacer returning and my symptoms?  I have an endoscope later this week and I am fretting.

     

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    14 years out and worried about a return

    In the past month I have had trouble swallowing and my doctors say it is gerd.  However the change of diet and the PPI medication they gave me is not helping much.  Yes, I do belch more and if I sleep upright it helps some  (typical way to relieve symptoms of gerd), but I also know that head and neck cancer (mine was from my tonsil) can return  Is there any information you can share with me on the rate of head and neck cnacer returning and my symptoms?  I have an endoscope later this week and I am fretting.

     

    welcome

    LR,

    Welcome to the H&N forum, don’t fret. You have been down this road  before and know how it works, it is not a (return) cancer until they say it is.  Anyway, you have a doctor’s appointment and you should get your answer soon.  I am sure you can find information about return, other than it does on occasion happen.  Be wise in your search for answers, doctor Google can be mean.

    This is an older thread and may not generate a response.  You may want to start a new thread.

    Matt

  • caregiver wife
    caregiver wife Member Posts: 234
    edited September 2017 #14
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    I am 16 years NED myself.  You always wonder.  BUT, we know there are a LOT of things besides cancer and they do happen a lot more often than cancer.  You are already doing all the right things.  Wishing you all the best - imagine me waiting with you while you fret and await your coming appointment.  Please let us know how you do.

    Hoping for the very best,

    Crystal

  • duster
    duster Member Posts: 2
    edited September 2017 #15
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    mucositis

    My husband just started with mucositis and already wants to give up. He's always,been one of the strongest people I know, so it breaks my heart to see him this way. We are doing all of the things we were told to do and have researched to do, Biotene, Healios, gum chewing, hard candy, baking soda, salt rinses, humidifier at night, etc etc. I just read about the warm water rinse slowly down the throat so we'll try that too. Any advice going forward would be greatly appreciated.  

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    duster said:

    mucositis

    My husband just started with mucositis and already wants to give up. He's always,been one of the strongest people I know, so it breaks my heart to see him this way. We are doing all of the things we were told to do and have researched to do, Biotene, Healios, gum chewing, hard candy, baking soda, salt rinses, humidifier at night, etc etc. I just read about the warm water rinse slowly down the throat so we'll try that too. Any advice going forward would be greatly appreciated.  

    welcome duster

    Duster,

    Your husband’s tem should be able to identify (exactly) what his problem is.  It is too early (or is it too late) to give up.  Anyway, he cannot do that; it would ruin all his progress.

     Have tried just about all the dry mouth remedies, but I didn’t start trying them till after treatments had ended.

    The soda salt rinse is good to do all the time and lots of H&N members swear by warm liquids.  It is hard to break the crap loose as it may just be phantom mucus caused by irritation.  Some have good luck with Mucinex  to free things up. 

    I had great luck with magic mouth wash for throat, tongue and mouth discomfort.

    Tell him to get back on the H&N horse and ride it for all it is worth.  In a short time he can give advice.

    Best to  you.

    Matt

  • Mavish
    Mavish Member Posts: 85 Member
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    duster said:

    mucositis

    My husband just started with mucositis and already wants to give up. He's always,been one of the strongest people I know, so it breaks my heart to see him this way. We are doing all of the things we were told to do and have researched to do, Biotene, Healios, gum chewing, hard candy, baking soda, salt rinses, humidifier at night, etc etc. I just read about the warm water rinse slowly down the throat so we'll try that too. Any advice going forward would be greatly appreciated.  

    mucositis

    Sorry to hear about your husband. It is a hard journey. I was in the same situation last year. The good thing is everything gets better eventually. 

    I was prescribed a mucositis mouthwash,  which contains lidocaine (a local anesthetic) and nystatin (antifungal to prevent candidiasis) to use before meals. It helped with the pain while eating. They also prescribed pain medication including morphine which helped both with pain and discomfort in my through that cause coughing.You may want to discuss with your doctor. Some patients had PEG tube to help with nutrition ( I choose not to have). 

    I also drink herbal tea with manuka honey during the day and a teaspoonful coconut or olive oil before going to bed for dry mouth in addition to frequent baking soda rinses.

    He will be in my thoughts and prayers.

     

     

  • SRFH
    SRFH Member Posts: 3
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    Head, neck and throat

    Hi! I just joined this forum and glad I did! I had surgery on July 7th and  everything has turned upside down in my life. My cancer was in the bottom of my mouth and was stage 3. I'm somewhat surprised that so many of you have had chemo and radiation. I was told that chemo would not work for me. I had breast cancer in 2009 and had both of them.

    My surgery was horrible but better than cancer. The incision was from ear-to-ear and healing fairly well. They took out all my lymph nodes . I also had a feeding tube in my nose. My tongue is not back where it should be, (I have a speech specialist), I can't talk like I did (it was bad after the surgery but it's getting better. I still get hung up on a lot of words), and I have lymphedema under my chin. And the eating is not right either. 

    Have any of you had any of these problems? BTW, my mouth varies from extreme dry to drowning in salavia. 

    I'd to hear if you have these symptoms. Thanks!

     

     

     

  • rsp
    rsp Member Posts: 103 Member
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    Start a new thread

    You may want to go to the top of the original page and add your comment to the spot that says: ADD NEW FORUM TOPIC

    This will start a new thread and you will probably get more responses this way.

    Best of luck to you!

  • SRFH
    SRFH Member Posts: 3
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    I'm with you, Cheeno! Tired of not eating. I did smoke, which is immaterial except that I have only myself to blame, but I have had about half of my tongue and I don't know how much of my right neck removed, along with the lymph nodes on that right side, went through chemo and 33 radiation treatments and all of the problems that people talk about and as a Type A type, really was ahead of the game coming out of surgery and going into recuperation, or so I thought... and then reality set in. I am still not eating in public, although my radiation therapy ended in January and it is now the first of Sept... I can drink anything, I eat soups, I eat mashed anything...but I want to be normal...it may be that this will never happen. Bread and beans and other things still stick to the roof of my mouth and my tongue isn't big enough or powerful enough to get up there and knock it down, to be blunt. One problem I found was that I set the end of treatments as goals. That is, I figured when radiation ended, when chemo ended, things would start picking up right away. Just ain't so. Those treatments are designed to poison you, as you know, and it takes time AFTER them to recover FROM them. So I would suggest that you not quit trying to drink, to eat, if your doctors advise you can, but that you also realize, you need time to heal from your cure. You really do. The frustration is a ****, I know. Take it slow, but as fast as you can. Be patient but be urgent. And remember that you need time to heal from your cure. Best wishes.

    tongue and neck, throat

    soccerfreaks, although we have different cancer and surgeries, I am going through the same things you are. The surgery was horrible and the recuperation is slow.  My incision was from neck to neck and still hurts. I have lymphedema under my chin, bulges that have to be drained and the eating problems. I'm taking things day-by-day and hope for the best. My surgeon says that things are not back in place in six months that they will never change. My speech therapist says she believe that. I'm hoping that my therapist is right.

  • SRFH
    SRFH Member Posts: 3
    edited September 2017 #21
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    Start a new thread

    rsp. thank you for letting me know about where to go. I appreciate it.