Tongue not healing after radiation and chemo

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csmader
csmader Member Posts: 5
in Head and Neck Cancer #1
My husband completed radiation and chemo the end of January for tongue cancer. He is still experiencing major pain and is unable to eat due to the pain. There is still swelling and raw places in his mouth and on his tongue. He did great going through radiation and the doctor is not sure why the healing process has not taken place. He is still using pain meds and a liquid topical pain med for his mouth. He has been able to swallow liquids only at room temperature and he still has a feeding tube. Has anyone experienced anything like this or know of someone that has?

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  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #2
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    End of Jan
    Still only a couple of months, but it seem my healing was well underway by then. Does take time. An old discussion did make light of that which one does put in their mouth during the healing time- nothing acidic should be taken-in during this time, which is to say that nothing which inhibits the healing should be put in the mouth. First couple months just about the most I could handle was pancakes with lotsa butter and syrup. Takes time. If the lack of healing continues, though- maybe should go to a major C center for diagnosis and help.

    kcass
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
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    Don't panic
    the odds are that he is just slow healing and that not enough time has gone by. We all heal differently after the insult of chemo/rads. Some are lucky enough to sneak through treatment with barely any problems. Others take forever to heal. But what you describe does eventually heal. I finished rads February 23. I am still mostly on a liquid diet, with ulcers that are very slowly healing, mostly on my oral mucosa. I never did require a feeding tube, and it doesn't sound like your husband needs one now. If he can get room temperature liquids down (boy I remember how bad cold stuff hurt, and hot stuff still does!), he can injest enough ensure or other supplements to get his caloric requirements met. That's what I've been doing for about 4 months now.

    Make sure he doesn't have thrush. There is an ulcerative form of this nasty infection, and it hurts like hell. I've had it three times, and it can hurt bad enough to prevent even fluids from wanting to go down. Others will be along with comments and suggestions. Don't panic. Healing takes however long it takes.


    pat
  • ratface
    ratface Member Posts: 1,337 Member
    #4
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    I probably went about a month past rads with major eating issues
    and a week at, the room temperature, it hurts to eat, agony type of pain, not requiring his level of pain meds, for your comparison. I had 39 rads and 3 rounds of cisplatin. My feeding tube was in nine months total. Welcome to the boards, on the bright side he is able to eat a small tidbit in agony, improvement from there and your on your way to recovery. He seems to be in great hands. How is his level of energy? Try and get him out for a walk.
  • csmader
    csmader Member Posts: 5
    #5
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    ratface said:

    I probably went about a month past rads with major eating issues
    and a week at, the room temperature, it hurts to eat, agony type of pain, not requiring his level of pain meds, for your comparison. I had 39 rads and 3 rounds of cisplatin. My feeding tube was in nine months total. Welcome to the boards, on the bright side he is able to eat a small tidbit in agony, improvement from there and your on your way to recovery. He seems to be in great hands. How is his level of energy? Try and get him out for a walk.

    Thank you for the
    Thank you for the encouraging words. His energy is good considering he lost 50 lbs. Very slow to gain it back. He tries to walk daily and keep active.
  • csmader
    csmader Member Posts: 5
    #6
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    longtermsurvivor said:

    Don't panic
    the odds are that he is just slow healing and that not enough time has gone by. We all heal differently after the insult of chemo/rads. Some are lucky enough to sneak through treatment with barely any problems. Others take forever to heal. But what you describe does eventually heal. I finished rads February 23. I am still mostly on a liquid diet, with ulcers that are very slowly healing, mostly on my oral mucosa. I never did require a feeding tube, and it doesn't sound like your husband needs one now. If he can get room temperature liquids down (boy I remember how bad cold stuff hurt, and hot stuff still does!), he can injest enough ensure or other supplements to get his caloric requirements met. That's what I've been doing for about 4 months now.

    Make sure he doesn't have thrush. There is an ulcerative form of this nasty infection, and it hurts like hell. I've had it three times, and it can hurt bad enough to prevent even fluids from wanting to go down. Others will be along with comments and suggestions. Don't panic. Healing takes however long it takes.


    pat

    Thank you for the comments
    Thank you for the comments of encouragement. He has a check up every two weeks and his doctor said he does not have thrush and there is no infection. He is still using the feeding tube because some days are worse than others and it is a relief when he needs it.
  • csmader
    csmader Member Posts: 5
    #7
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    Kent Cass said:

    End of Jan
    Still only a couple of months, but it seem my healing was well underway by then. Does take time. An old discussion did make light of that which one does put in their mouth during the healing time- nothing acidic should be taken-in during this time, which is to say that nothing which inhibits the healing should be put in the mouth. First couple months just about the most I could handle was pancakes with lotsa butter and syrup. Takes time. If the lack of healing continues, though- maybe should go to a major C center for diagnosis and help.

    kcass

    Thanks for the information.
    Thanks for the information. He is going to the Baylor Cancer Center in Dallas. Excellent team of doctors. Would not mind getting a second opinion but he is against......
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #8
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    csmader said:

    Thank you for the
    Thank you for the encouraging words. His energy is good considering he lost 50 lbs. Very slow to gain it back. He tries to walk daily and keep active.

    tongue not healing
    Hi csmader,

    I just finished my radiation and Erbitux treatments at the end of Janaury (20th) and just a little over a week ago I turned a corner. I too kept asking the doctor why does it seem I am the slow one in class when I kept reading that so many people did better so much faster than I was.

    He looked at me and said I was impatient (in a kind way). He proceeded to say that everybody is different and though he wishes I could heal faster, that is my body.

    I had stage III base of tongue SCC with one lymph node invovled and I was HPV +. My treatment was put on hold (radiation and Erbitux) a couple of times due to the reaction to Erbitux and once to the burns on my neck ....

    I still have a swollen neck and still feels like something inside my throat ..but the mucous is gone (thank the Lord) which was the worst. I just knew I was going to choke to death on the mucous and all the other stuff in my throat ....pure misery and just seemed like no relief in sight.

    You will get thru it. Be patient and if you feel you need to go to your doctor for peace of mind...do it. I went to the ER one time with a 102 fever and was told I had strep on top of thrush !! So be sure and rinse / brush as much as you can.

    I drank gingerale at it helped me cut thru the mucous...but there are many people on here who can advise what worked for them.

    I have lost 73lbs to date. I started at a whopping 321 and now weigh 248. Im going to take this opportunity to get back down to 210 and stay healthy with exercise and diet. ;)

    As I end this post ..I hope you do not mind I said a prayer for your husband. Tell him we are with him in spirit and hang in there.

    Tim & Jennifer Cogdill / Idaho
    timcogdill@yahoo.com

    I go for my first post treatment PET scan May 7th :) Im looking for good news.
  • csmader
    csmader Member Posts: 5
    #9
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    Tim6003 said:

    tongue not healing
    Hi csmader,

    I just finished my radiation and Erbitux treatments at the end of Janaury (20th) and just a little over a week ago I turned a corner. I too kept asking the doctor why does it seem I am the slow one in class when I kept reading that so many people did better so much faster than I was.

    He looked at me and said I was impatient (in a kind way). He proceeded to say that everybody is different and though he wishes I could heal faster, that is my body.

    I had stage III base of tongue SCC with one lymph node invovled and I was HPV +. My treatment was put on hold (radiation and Erbitux) a couple of times due to the reaction to Erbitux and once to the burns on my neck ....

    I still have a swollen neck and still feels like something inside my throat ..but the mucous is gone (thank the Lord) which was the worst. I just knew I was going to choke to death on the mucous and all the other stuff in my throat ....pure misery and just seemed like no relief in sight.

    You will get thru it. Be patient and if you feel you need to go to your doctor for peace of mind...do it. I went to the ER one time with a 102 fever and was told I had strep on top of thrush !! So be sure and rinse / brush as much as you can.

    I drank gingerale at it helped me cut thru the mucous...but there are many people on here who can advise what worked for them.

    I have lost 73lbs to date. I started at a whopping 321 and now weigh 248. Im going to take this opportunity to get back down to 210 and stay healthy with exercise and diet. ;)

    As I end this post ..I hope you do not mind I said a prayer for your husband. Tell him we are with him in spirit and hang in there.

    Tim & Jennifer Cogdill / Idaho
    timcogdill@yahoo.com

    I go for my first post treatment PET scan May 7th :) Im looking for good news.

    Thank you for sharing your
    Thank you for sharing your experience. It certainly gives me encouragement. We are both very frustrated and do not know what to do. My husband also had one lymph node with a small trace of canger. I appreciate the prayer, one cannot get enough. I too will say a prayer for you. Best of luck with your PET scan today.

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