Ch ch ch changes?

Pam M
Pam M Member Posts: 2,196
in Head and Neck Cancer #1
Hi all - I'm fine, but wondering . . .

Have any of you taken any steps "back" after treatment? What kind, and when? About three months ago, I started having a more "tender" throat, and more sensitivity while eating. I finished rads two years ago.

My docs weren't interested - I look and test fine. I had gotten to where I could eat MANY foods - nearly all I ate before, but some spicy ones were just too much. I could eat mild salsa with no issues, but not the medium I ate before treatment.

Now, I'm back to having catsup and ranch salad dressing burn - for at least three months now. Catsup was one of my goal foods after treatment - I regained the ability to eat it pretty quickly after treatment.
Chicken barbecue pizza (which I was able to usually eat) made my ears hurt so much a couple weeks ago, I just couldn't do it. Do the rest of you have ears that hurt when you eat spicy food? Since treatment, mine do.

I'm just getting over a two week bout with acute upper respiratory infections, acute bronchitis, sinus infection, laryngitis, pharyngitis and another "itis" I can't recall now. So I'm still hoarse, and finishing my antibiotics ($94 - really??? - some are like eighteen bucks).

Also back to not wanting to drink soft drinks (which is a good thing). It's odd - the first drink I take of a soft drink, it's like I'm swishing hydrogen peroxide in my mouth. I swear, it feels like it's fizzing some kind of coating off inside my mouth.

Also having more dry mouth issues than I did this time last year. Don't get me wrong - my dry mouth issues are nothing compared to the issues many have - it's just that it bugs me that I'm just "really good", instead of "amazingly good", for somebody who's done head and neck rads, and lost a salivary gland.

Wah. I would love to know, though, if anyone else feels they've lost any ground after recovering from treatment.

Comments

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #2
    I did!
    I lost ground in first recovery because I had mets to neck and had to go through it again. This time more loss of saliva, difficulty swallowing meat, still having fatigue (major problem) and now ear has become very sensitive. I need to keep ear plugs handy because some noises hurt and then I have ringing in the ears for a week. Cancer surgeon thinks I need to see ENT, guess I will call and see if I can get an appointment soon. Pain in jaw seems to be more noticable, I think maybe nerves are coming back. Sometimes go to bed and feel like a noose is around my neck, still have extra pillows for comfort.
    All in all, glad to be here. Work around the food issues, I can eat--no spice or black pepper. I am a teacher, my new issue is sick kids--no fever, not sick. I'm trying to figure how to stay away from germies!
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #3
    Ya, Pam. I resemble your remarks.
    I was fussing to family members a couple weeks ago that I feel as though I was doing better a year ago than I am now. Nothing major. Just a whole bunch of small things that seem to bother me a lot more. No spit, no snot and no tears. I'm really having a problem with dry eyes at work. I apply the re-wetting drops several times per day, which means that mascara is a thing of the past. The jerky-tongue issue happens nightly. If I use Biotene each time I wake up, I can usually keep the wakeups to two or three. Tongue is burning again with certain foods. Sometimes it still feels swollen and my speech is less clear.

    I got a cold a couple months back. Never went further than Laryngitis (and I did get checked out for every possible complication). The hoarseness and mucus is still with me. I gag when I get up, and by the end of the day I have no voice left. I've had three night meetings this week, where I had to speak, and it was NOT easy.

    I had blood work done last week, and on a positive note, my white blood cell count has continued it's slow progress and I'm a bit closer to normal. Also, my thyroid remains normal. Time to count my blessings. All in all, I'm still damn glad to be here.

    Deb
  • Pam M
    Pam M Member Posts: 2,196
    #4
    KTeacher said:

    I did!
    I lost ground in first recovery because I had mets to neck and had to go through it again. This time more loss of saliva, difficulty swallowing meat, still having fatigue (major problem) and now ear has become very sensitive. I need to keep ear plugs handy because some noises hurt and then I have ringing in the ears for a week. Cancer surgeon thinks I need to see ENT, guess I will call and see if I can get an appointment soon. Pain in jaw seems to be more noticable, I think maybe nerves are coming back. Sometimes go to bed and feel like a noose is around my neck, still have extra pillows for comfort.
    All in all, glad to be here. Work around the food issues, I can eat--no spice or black pepper. I am a teacher, my new issue is sick kids--no fever, not sick. I'm trying to figure how to stay away from germies!

    Earplugs - Wow
    When did you have the neck dissection? I usually don't feel the "noose" anymore, but from time to time it comes back (thankfully for a short time only).

    Sorry to hear about the ear issues you have. Luckily for me, since treatment, my ears only buzz or ring once in a while, and it doesn't last long.
  • Pam M
    Pam M Member Posts: 2,196
    #5
    D Lewis said:

    Ya, Pam. I resemble your remarks.
    I was fussing to family members a couple weeks ago that I feel as though I was doing better a year ago than I am now. Nothing major. Just a whole bunch of small things that seem to bother me a lot more. No spit, no snot and no tears. I'm really having a problem with dry eyes at work. I apply the re-wetting drops several times per day, which means that mascara is a thing of the past. The jerky-tongue issue happens nightly. If I use Biotene each time I wake up, I can usually keep the wakeups to two or three. Tongue is burning again with certain foods. Sometimes it still feels swollen and my speech is less clear.

    I got a cold a couple months back. Never went further than Laryngitis (and I did get checked out for every possible complication). The hoarseness and mucus is still with me. I gag when I get up, and by the end of the day I have no voice left. I've had three night meetings this week, where I had to speak, and it was NOT easy.

    I had blood work done last week, and on a positive note, my white blood cell count has continued it's slow progress and I'm a bit closer to normal. Also, my thyroid remains normal. Time to count my blessings. All in all, I'm still damn glad to be here.

    Deb

    Bunch of Small Things
    Exactly, Deb! I know that when I complained to my ENT doc about the changes (before I got the infection from my nose to knockers), he gave me a "You're not really whining about this stuff are you?" look, and said "Everything looks fine. You should increase your water intake". I just really REALLY wanted the man to say "Sometimes this does happen - but it doesn't last".
    If you had told me before treatment that I'd have these issues, I would not have cared.

    On an odd note: I tried a different brand of salad dressing (Marzetti All Natural, or something like that - refrigerator section of store). It is MUCH easier to eat than the stuff from the regular shelves. I think I might buy a bottle of the regular Marzetti, for a side-by-side "ouch" factor test. Naturally, the stuff that is easier to eat costs a lot more.
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #6
    Pam M said:

    Bunch of Small Things
    Exactly, Deb! I know that when I complained to my ENT doc about the changes (before I got the infection from my nose to knockers), he gave me a "You're not really whining about this stuff are you?" look, and said "Everything looks fine. You should increase your water intake". I just really REALLY wanted the man to say "Sometimes this does happen - but it doesn't last".
    If you had told me before treatment that I'd have these issues, I would not have cared.

    On an odd note: I tried a different brand of salad dressing (Marzetti All Natural, or something like that - refrigerator section of store). It is MUCH easier to eat than the stuff from the regular shelves. I think I might buy a bottle of the regular Marzetti, for a side-by-side "ouch" factor test. Naturally, the stuff that is easier to eat costs a lot more.

    Thanks
    I will look for the dressing. I have not been able to use dressing, Ranch was my favorite, because it burned my tongue. I'll try enything once to see if I can tolerate it. Thanks for the post, I sound so whiny when I talk to my sister about any side effects. I really am glad to be here, but difficult to explain what I can't do, eat, listen to anymore.

    Neck dissection was last July. I need to get back to the chiropractor as soon as school gets out, muscles in back and neck seem to be tightening up. I know Rat will say yoga, I need to start that also.
  • osmotar
    osmotar Member Posts: 1,006
    #7
    Changes
    Some days it seems like I have a glob of gunk in my throat , hot tea seems to break it . Then some time in Feb I noticed some white spots on the side of tounge, I showed to my onco doc, she said to have ENT look at it, he gave me antibiotic which didn't do a thing, then went to magic mouth wash thought it might be thrush..still nothing, it hurts mainly depending on if I'm eating somethig rough. All 3 of my docs don't think it's anything major..easy for them to say..you know how once you have had anything with head/neck your always paranoid about the next ouch , pain or whatever..well I see the ent again in a few weeks and he said he will take a small biopsy of the spots if their not gone. I went thru all treatments so well with no issues and now this , I guess my rad doc was right when he said radiation is the gift that keeps on giving.
  • Pam M
    Pam M Member Posts: 2,196
    #8
    osmotar said:

    Changes
    Some days it seems like I have a glob of gunk in my throat , hot tea seems to break it . Then some time in Feb I noticed some white spots on the side of tounge, I showed to my onco doc, she said to have ENT look at it, he gave me antibiotic which didn't do a thing, then went to magic mouth wash thought it might be thrush..still nothing, it hurts mainly depending on if I'm eating somethig rough. All 3 of my docs don't think it's anything major..easy for them to say..you know how once you have had anything with head/neck your always paranoid about the next ouch , pain or whatever..well I see the ent again in a few weeks and he said he will take a small biopsy of the spots if their not gone. I went thru all treatments so well with no issues and now this , I guess my rad doc was right when he said radiation is the gift that keeps on giving.

    I'm With You, osmotar
    It IS easy for them to say it's nothing to be concerned about. I understand that the chance that you DO have something to worry about is not great. But, as you know, once we're in the club, nothing is "just" a sore throat/rash/infection/blister/case of thrush/etc. It does help that your docs seem to be in agreement about not being concerned - too bad the logical part of our heads can't be in charge all the time when it comes to things like this, though. Hope the spots are long gone by the time you see ENT again.

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