Clean scan after surgery for tongue cancer, but now canker sore problem

Agatha
Agatha Member Posts: 62
in Head and Neck Cancer #1
Hi, everyone.

I haven't been on here for a while, but I truly hope you are all well. You are all in my thoughts and prayers.

I had my first scan after surgery/radiation for my tongue cancer on April 12 and it came back clean. I was so excited and as soon as I got the news, I decided I would go back to work this week.

But since last Tuesday I have developed excruciating canker sores all over inside my mouth. When I was completing radiation treatment I never had such bad canker sores. I completed radiation treatment three months ago.

Now I am having a problem with canker sores on my gums, lips, cheeks, throat, tongue, even on my flap and I had a bit of fever. It has just gotten progressively worse and I have broken out in a rash all over my neck. I have been rinsing with nystatin and lidocaine (mixed) and when I went to emergency on Friday they gave me another rinse (Chlorhexidine Gluconate). I have also been using baking soda and water rinses. Nothing seems to really be helping and it is so painful to eat, speak and brush my teeth.

Has anyone had this problem months after radiation? When I went to the hospital on Friday they seemed to think I may have an immune deficiency or that it could be viral. They took blood work and told me to go see my surgeon doctor this week. I am so very worried. I don't know what all this could mean. I am trying to stay positive since I got a clean scan just two weeks ago.

If anyone could give me some insight on this it would be greatly appreciated.

All the best,
Agatha

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    See your MD
    Hi Agatha,

    Sorry you are going through this...

    From the sound of your post, you didn't have chemo I take it...no matter on that. But I'd call your treating MD as soon as possible....do you have an ENT? If so I'd actually probably start with him/her first. Mine has been alwatys involved and is actually the lead of my team from the start.

    If I have or had anything going on, he made a point to get me in ASAP and scope me, throughly check me out. Most of the time with me it was just residual left over from the rads. But it was and still is always re-assuring.

    Just my two cents, but I'd get one of those two involved as soon as you can get in to see one. If it's minor great, if not, they can get you on something now, if nothing else some peace of mind, and hopefully some drugs for relief.

    Thoughts and Prayers,
    John
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #3
    Immunity
    Agatha, in my case, I ultimately developed cellulitis (a bacterial infection) in the facial area, along with another infection in my lungs, quite some time after my initial surgery, chemo and rads (a couple of years later, in fact). It is apparently not unusual for these sorts of things to happen, for the very reason you cite: lowered immunity.

    If you have not done so, see your family doc or OncoMan as soon as you can (and whichever you can get to faster) since you do not want to put up with this kind of pain.

    Take care,

    Joe
  • Agatha
    Agatha Member Posts: 62
    #4
    Skiffin16 said:

    See your MD
    Hi Agatha,

    Sorry you are going through this...

    From the sound of your post, you didn't have chemo I take it...no matter on that. But I'd call your treating MD as soon as possible....do you have an ENT? If so I'd actually probably start with him/her first. Mine has been alwatys involved and is actually the lead of my team from the start.

    If I have or had anything going on, he made a point to get me in ASAP and scope me, throughly check me out. Most of the time with me it was just residual left over from the rads. But it was and still is always re-assuring.

    Just my two cents, but I'd get one of those two involved as soon as you can get in to see one. If it's minor great, if not, they can get you on something now, if nothing else some peace of mind, and hopefully some drugs for relief.

    Thoughts and Prayers,
    John

    Thanks for your advice,
    Thanks for your advice, John.

    No, I didn't have chemo, 30 rads that I completed mid-January. I do have an ENT, but because of Good Friday and Easter, I wasn't able to see him. I thought going to emergency might help, but they pretty much just told me to schedule an appointment to see him. I will be seeing him tomorrow - hopefully it's just an infection of some sort or maybe like you said, residual from the rads.

    It's too bad this has happened now, after I got my g-tube removed last month. I have somehow managed to lose about 5 pounds in the last week since it's so painful to eat.

    You're right, peace of mind and some drugs for relief would be great to have.

    Thanks again. I appreciate it.
    Agatha
  • Agatha
    Agatha Member Posts: 62
    #5
    soccerfreaks said:

    Immunity
    Agatha, in my case, I ultimately developed cellulitis (a bacterial infection) in the facial area, along with another infection in my lungs, quite some time after my initial surgery, chemo and rads (a couple of years later, in fact). It is apparently not unusual for these sorts of things to happen, for the very reason you cite: lowered immunity.

    If you have not done so, see your family doc or OncoMan as soon as you can (and whichever you can get to faster) since you do not want to put up with this kind of pain.

    Take care,

    Joe

    Joe, I haven't heard of
    Joe, I haven't heard of that. Did it go away? Did you get a lot of canker sores? Not only am I worried it may be something more, I just cringe at the thought of this occurring frequently. The pain is so bad.
    They did blood work and that came back fine, but I guess after everything, surgery and rads, it is a pretty hard hit to the body and its ability to fight.

    Thanks for the advice.

    Take good care,
    Agatha
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    Agatha said:

    Joe, I haven't heard of
    Joe, I haven't heard of that. Did it go away? Did you get a lot of canker sores? Not only am I worried it may be something more, I just cringe at the thought of this occurring frequently. The pain is so bad.
    They did blood work and that came back fine, but I guess after everything, surgery and rads, it is a pretty hard hit to the body and its ability to fight.

    Thanks for the advice.

    Take good care,
    Agatha

    It Does Take Awhile
    I am in good health and was going in..."Other than having Cancer I was in perfect health, LOL"...

    I started treatment in January 2009, finishing up mid June 2009. It took until March 2010 before all of my blood work came back into normal ranges.


    But the good thing everything is still within range (other than TSH - Thyroid).

    It definitely takes a hit on your body and system.

    Best,
    John
  • Agatha
    Agatha Member Posts: 62
    #7
    Skiffin16 said:

    It Does Take Awhile
    I am in good health and was going in..."Other than having Cancer I was in perfect health, LOL"...

    I started treatment in January 2009, finishing up mid June 2009. It took until March 2010 before all of my blood work came back into normal ranges.


    But the good thing everything is still within range (other than TSH - Thyroid).

    It definitely takes a hit on your body and system.

    Best,
    John

    "Perfect Health"
    I was in "perfect health" as well other than having the cancer. I can't help laughing at that, either. Other than being a little lower in weight than what they would have liked, I was okay.

    I am worried about my thyroid in the future. Hopefully it doesn't cause me too many problems. My doctor just said I would have to take a pill a day and I would be fine. Somehow I never feel reassured when they say that. Did you have to start taking that pill? Does it help? Not to sound vain, but I am worried about gaining a great deal of weight that I won't be able to control.

    I think it's strange that they said all my bloodwork is fine - I definitely don't feel fine.

    Here's to continued good health,
    Agatha
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    Agatha said:

    "Perfect Health"
    I was in "perfect health" as well other than having the cancer. I can't help laughing at that, either. Other than being a little lower in weight than what they would have liked, I was okay.

    I am worried about my thyroid in the future. Hopefully it doesn't cause me too many problems. My doctor just said I would have to take a pill a day and I would be fine. Somehow I never feel reassured when they say that. Did you have to start taking that pill? Does it help? Not to sound vain, but I am worried about gaining a great deal of weight that I won't be able to control.

    I think it's strange that they said all my bloodwork is fine - I definitely don't feel fine.

    Here's to continued good health,
    Agatha

    TSH Levels
    Though my TSH levels are out of range being around 7+ normal somewhere between .5 - 5.0, my T4 levels are in range.

    They tried putting me on the minimal doasage of Synthroid (one of the pills you mentioned). I was on it for 10 days and it did actually lower my TSH levels back to the 2.5 area. But at that time it was causing my pulse rate and blood pressure to wack out on the high side...resting pulse went from around 72 to 90 - 100.

    So they had me stop and the pulse and BP returned back in range.

    As of now they don't have me on anything, just monitoring, mainly fatigue level I guess. When it becomes more of a problem then they plan or addressing the issue. Who knows, by that time, my body might be more ready to accept it. But as of now, it speeds up my metabolism too much.

    Not something to worry about that much I believe, it's supposedly easily treated, just a small learning curve on dosage and type that works best.

    John
  • Agatha
    Agatha Member Posts: 62
    #9
    Skiffin16 said:

    TSH Levels
    Though my TSH levels are out of range being around 7+ normal somewhere between .5 - 5.0, my T4 levels are in range.

    They tried putting me on the minimal doasage of Synthroid (one of the pills you mentioned). I was on it for 10 days and it did actually lower my TSH levels back to the 2.5 area. But at that time it was causing my pulse rate and blood pressure to wack out on the high side...resting pulse went from around 72 to 90 - 100.

    So they had me stop and the pulse and BP returned back in range.

    As of now they don't have me on anything, just monitoring, mainly fatigue level I guess. When it becomes more of a problem then they plan or addressing the issue. Who knows, by that time, my body might be more ready to accept it. But as of now, it speeds up my metabolism too much.

    Not something to worry about that much I believe, it's supposedly easily treated, just a small learning curve on dosage and type that works best.

    John

    TSH
    Thanks for clearing that up, John. I wasn't really sure what they do to deal with the thyroid side effect. Sorry to hear you had that kind of reaction when they put you on that pill. And you're right, until you have to really worry about it, don't, and hopefully by then your body will be more ready to accept it.

    By the way, I went to see my ENT doctor today. He was surprised to see me back and said "In all my years, I have never seen this." Definitely did not make me feel better. He doesn't believe it's a side effect from radiation, nor is it a skin infection from radiation. It seems like I caught some kind of virus. In his words, just really bad luck. I have to go back this week, hopefully it gets better.

    Thanks again for your advice,
    Agatha
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #10
    Agatha said:

    TSH
    Thanks for clearing that up, John. I wasn't really sure what they do to deal with the thyroid side effect. Sorry to hear you had that kind of reaction when they put you on that pill. And you're right, until you have to really worry about it, don't, and hopefully by then your body will be more ready to accept it.

    By the way, I went to see my ENT doctor today. He was surprised to see me back and said "In all my years, I have never seen this." Definitely did not make me feel better. He doesn't believe it's a side effect from radiation, nor is it a skin infection from radiation. It seems like I caught some kind of virus. In his words, just really bad luck. I have to go back this week, hopefully it gets better.

    Thanks again for your advice,
    Agatha

    Canker sores
    Did have one form on each side of my tongue adjacent to my back teeth. Then I noticed bone was exposed below those back lower teeth from gum loss. Rad Dr. sent me to a Periodontist to correct the cause by grinding away the protruding bone. Seems those areas of my tongue was being scraped by the bone. That was in late-09. Still have the canker sore on the right side, but it's size has stayed the same, and doesn't really hurt. Do remember my regular Dr. telling me there's no real cure for canker sores, but he did prescribe an ointment to put on them, which the Periodontist said was the correct stuff to use.

    kcass
  • Scambuster
    Scambuster Member Posts: 973
    #11
    Kent Cass said:

    Canker sores
    Did have one form on each side of my tongue adjacent to my back teeth. Then I noticed bone was exposed below those back lower teeth from gum loss. Rad Dr. sent me to a Periodontist to correct the cause by grinding away the protruding bone. Seems those areas of my tongue was being scraped by the bone. That was in late-09. Still have the canker sore on the right side, but it's size has stayed the same, and doesn't really hurt. Do remember my regular Dr. telling me there's no real cure for canker sores, but he did prescribe an ointment to put on them, which the Periodontist said was the correct stuff to use.

    kcass

    L-Glutamine Powder once again
    Agatha,

    You may wish to try the L Glutamine Powder to help heal the mouth tissue and relieve some of the pain. LG is a naturally Amino Acid of which we consume a lot. Buy the Powder type. Simply mix a heaped TBS in a glass of water and swish and swallow. Do this as many times a day as needed. You can eat loads with no ill effect. it is also tastless and has a topical effect, hence the swishing is good.

    Mouth sores should heal within 5 days. If not seek medcial advice.

    As your immune system may be beaten down post rads, you are prone to :Virus, bacteria, fungal and yeast infections.

    A good MultiVitamin and Vit B Complex are also good for Canker sores.

    Hope this helps and they disappear soon.
    Scam
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #12
    Agatha said:

    TSH
    Thanks for clearing that up, John. I wasn't really sure what they do to deal with the thyroid side effect. Sorry to hear you had that kind of reaction when they put you on that pill. And you're right, until you have to really worry about it, don't, and hopefully by then your body will be more ready to accept it.

    By the way, I went to see my ENT doctor today. He was surprised to see me back and said "In all my years, I have never seen this." Definitely did not make me feel better. He doesn't believe it's a side effect from radiation, nor is it a skin infection from radiation. It seems like I caught some kind of virus. In his words, just really bad luck. I have to go back this week, hopefully it gets better.

    Thanks again for your advice,
    Agatha

    ENT
    Glad you got in to see him and he was able to at least provide some mental relief. Hoping you get something for physical relief. Might be time to see your General MD.

    I have a little problem at times with my General MD. My medical organization is all one organization. Though in different locales within the city I live. They are all connected online, so all of my history is available (which is good).

    The problem I have at times though, is that I think my General MD is hesitant to step on my ENT or Chemo MD's toes. Mainly due to my previous diagnosis and my history with the cancer and cancer drugs.

    But overall he is a very good doctor himself.

    Best,
    John

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