over 8 months

arndog64
arndog64 Member Posts: 537
in Head and Neck Cancer #1
my hubby is still suffering fron severe throat pain 8 months out. tonight he is at an 8 and it seems to stay between 6 -8. I am curious what is it, that seems to cause all this pain over 8 months out.

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    This amount of pain
    will almost certainly be some form of post radiation problem. Does he follow up with an ENT? Has he been scoped? How does he handle this amount of pain? Personally, I'd get him in and get definitive answers. No advantage to him being a hero and just toughing this out.

    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    What He Said....
    I agree with Pat....does he have an ENT that he has regular follow-up visits with...?

    The first year out, I saw (and still do) , my ENT every 6 - 8 weeks (now 4 - 6 months after nearly 3 years).

    It's hard to get your head straight when you are constantly fighting pain and discomfort.

    Best,
    John
  • arndog64
    arndog64 Member Posts: 537
    #4
    Skiffin16 said:

    What He Said....
    I agree with Pat....does he have an ENT that he has regular follow-up visits with...?

    The first year out, I saw (and still do) , my ENT every 6 - 8 weeks (now 4 - 6 months after nearly 3 years).

    It's hard to get your head straight when you are constantly fighting pain and discomfort.

    Best,
    John

    Yes, he sees his ent every 3
    Yes, he sees his ent every 3 months to get scoped. We go again in March. On his last visit he said shouldn't I be getting better by now, doc says you it takes a long time. He also mentioned that if he still has his feeding tube after a year he made need it forever. I will bump up his appt. Thanks guys,
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    arndog64 said:

    Yes, he sees his ent every 3
    Yes, he sees his ent every 3 months to get scoped. We go again in March. On his last visit he said shouldn't I be getting better by now, doc says you it takes a long time. He also mentioned that if he still has his feeding tube after a year he made need it forever. I will bump up his appt. Thanks guys,

    Feeding Tube....Denny
    I don't have any actualy expereince....

    But my understanding is that Yes, you can lose the ability to swallow...if you don't use the muscles.

    I'm not sure but presume, there is always that chance due to our treatment.

    So I would definitely tell him to use them as much as he can. If he still needs assistance from the tube for calorie intake that's fine, but still keep swallowing as much as he can.

    Maybe Denny will chime in, he's as close an expert as I can think of on the topic....

    JG
  • Larrykins
    Larrykins Member Posts: 38 Member
    #6
    7 months
    Hi there,

    Definately get it checked out. Especially if you can't see any obvious cause.

    My experience: About a month and a half after I finished my rads I noticed a large area back of my throat turned white. Then a painful small white spot formed. Family thought it looked like a mucosite or mouth ulcer. I treated it with mouthwash and paracetamol. It grew however and began eating away at the flesh eventually excavating quite a large amount of soft tissue, about an inch long and half inch wide and quarter inch deep.. It was extremely painful, also 6-8 I would say. I actually went back onto the pain medication I used towards the end of my treatment and was spraying xylocaine 40% (stuff dentists use before an injection) directly on it every couple of hours for instant relief. Drove me crazy especially with the dryness etc also in there.

    it also drove me to see my doctor who told me it was necrosis caused by the radiation and there was basically nothing he could do. Just have to wait until it ran itself out. Obviously my first thought was 'what if it doesn't!'. Not knowing something is often worse than the pain which is why you should check it out.

    It suddenly stopped eating me a month ago and the pain went to a 1-2 which I have now still.

    Not saying that's what it is, just that there are weird things which go on after the treatment which can be really painful but ultimately, in my case, nothing to worry about long term. Radiation is the gift that keeps on giving!

    Larry
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
    arndog64 said:

    Yes, he sees his ent every 3
    Yes, he sees his ent every 3 months to get scoped. We go again in March. On his last visit he said shouldn't I be getting better by now, doc says you it takes a long time. He also mentioned that if he still has his feeding tube after a year he made need it forever. I will bump up his appt. Thanks guys,

    I'd be pretty proactive about all this.
    Yes, it can take a long time. But this amount of pain should have a cause. The ENT should be able to see an ulcer or some obvious cause to this. And it is true that the longer the feeding tube is needed, the greater the odds it will need to be permanent. OTOH, there is stuff like swallowing therapy, definitive treatment for persistent ulceration, etc. So I'd calmly but firmly require the expert to work this up and suggest the best avaailable treatment.

    Best to you.
  • Irishgypsie
    Irishgypsie Member Posts: 333
    #8
    Larrykins said:

    7 months
    Hi there,

    Definately get it checked out. Especially if you can't see any obvious cause.

    My experience: About a month and a half after I finished my rads I noticed a large area back of my throat turned white. Then a painful small white spot formed. Family thought it looked like a mucosite or mouth ulcer. I treated it with mouthwash and paracetamol. It grew however and began eating away at the flesh eventually excavating quite a large amount of soft tissue, about an inch long and half inch wide and quarter inch deep.. It was extremely painful, also 6-8 I would say. I actually went back onto the pain medication I used towards the end of my treatment and was spraying xylocaine 40% (stuff dentists use before an injection) directly on it every couple of hours for instant relief. Drove me crazy especially with the dryness etc also in there.

    it also drove me to see my doctor who told me it was necrosis caused by the radiation and there was basically nothing he could do. Just have to wait until it ran itself out. Obviously my first thought was 'what if it doesn't!'. Not knowing something is often worse than the pain which is why you should check it out.

    It suddenly stopped eating me a month ago and the pain went to a 1-2 which I have now still.

    Not saying that's what it is, just that there are weird things which go on after the treatment which can be really painful but ultimately, in my case, nothing to worry about long term. Radiation is the gift that keeps on giving!

    Larry

    Same Problem!
    I had the same problem as Larry. I was 6 months out last Jan.and found as tiny ulcer. Needless to say I freaked; they did biopsies that came back negative; but the biopsies made the necrosis worse. I probably took until march-april to get better.

    Now, I'm not saying this is what is going on with your husband. It's really hard to say, since your not able to give us detailed info on what his throat looks like or your not getting enough info from ENT. But I hope he is eating and drinking this far out; especially lots of water. The water will help keep back of throat moist to prevent friction on any wounds that aren't healing. Your husband was diagnosed younger like me, so he should be healing fairly quick and getting his swallow back; but also his was BOT, mine was tonsil, so this maybe why it is taking longer? Bottom line we all heal differently, have patience and make sure he keeps trying with swallowing, regardless of pain; and let's see what happens by next ent appointment!

    Charles
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
    arndog64 said:

    Yes, he sees his ent every 3
    Yes, he sees his ent every 3 months to get scoped. We go again in March. On his last visit he said shouldn't I be getting better by now, doc says you it takes a long time. He also mentioned that if he still has his feeding tube after a year he made need it forever. I will bump up his appt. Thanks guys,

    There is no way to say what
    There is no way to say what his pain is, but I know I was on that pain patch for a year. Radiation destroys healthy cells, as well as cancer cells. My throat doesn't feel the same, my tongue hurts every day, and I will be three years out, in May.

    I know in my case, it was radiation damage. I had mouth sores for months. Only thing I can say, is for him to ask his doctors.

    Also, don't believe the part about having the tube forever if he still has it after 8 months. It's not necessarily true. I had mine, for 18 months, and I didn't even start drinking again for 5 months, and I ate no food, for 9 months. I am eating all kinds of good stuff and my weight is almost back to normal. It takes me forever to eat, but I can do it. I also had to be stretched out twice.

Discussion Boards