post-treatment question

dwoythal
dwoythal Member Posts: 4
edited March 2014 in Head and Neck Cancer #1
My husband finished treatment last March for BOT with lymph node involvement. He doesn't have any saliva and sometimes some neck discomfort but other than that, he's done well and we are very thankful. The biggest concern he has is that he still is very tired and needs daily naps. How 'normal' is it for him to still feel so fatigued?

Tom's wife

Comments

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #2
    I'm betting ...
    I'm betting that most of us here take a lot more naps than we did prior to treatment. That being said, excess fatigue may be a sign of thyroid issues. I've been warned that a possible long-term side effect of treatment will be thyroid issues so my GP is tracking thyroid function. It may be time to get his thyroid checked if you haven't done so, yet.

    Deb
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #3
    Double Post...
    I swear I only hit the button once!

    Deb
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
    D Lewis said:

    Double Post...
    I swear I only hit the button once!

    Deb

    I am 17 months out and I
    I am 17 months out and I still have extreme fatigue. I have had my thyroid checked so it's not that. I think most of us have some level of lingering fatigue.
  • dwoythal
    dwoythal Member Posts: 4
    #5
    D Lewis said:

    I'm betting ...
    I'm betting that most of us here take a lot more naps than we did prior to treatment. That being said, excess fatigue may be a sign of thyroid issues. I've been warned that a possible long-term side effect of treatment will be thyroid issues so my GP is tracking thyroid function. It may be time to get his thyroid checked if you haven't done so, yet.

    Deb

    I'm betting
    Thank you, both Deb and Sweetblood, for responding. For all the tough side effects of the treatment, fatigue is not one of the most uppermost ones, but for someone who has always had all kinds of energy, it can be worrisome and depressing. We will check out the thyroid possibility and then try to relax about the tiredness.

    another Deb
  • friend of Bill
    friend of Bill Member Posts: 87
    #6
    ditto...
    ...what Sweetblood said at 23 months. It's better but has taken a lot of time. Oddly, exercise after which I am tired seems to help the fatique and spirits over time. Endorphins? Try not to be discouraged about it.

    Vince
  • abbimom
    abbimom Member Posts: 87 Member
    #7
    fell asleep in class
    That is normal. I had cancer when I was 21 and after my treatments I went back to college. I had a class at 3 that I had to drop because I was basically passing out from exhaustion during it. With time the need to take a nap and fatigue gets better. I need naps now because I take care of a 2 year old. But after the first two years I always got tired around the same time in the middle of the day where I could not keep my eyes open. It gets better. I also had tongue cancer.
    Best wishes,
    Linda
  • abbimom
    abbimom Member Posts: 87 Member
    #8
    fell asleep in class
    That is normal. I had cancer when I was 21 and after my treatments I went back to college. I had a class at 3 that I had to drop because I was basically passing out from exhaustion during it. With time the need to take a nap and fatigue gets better. I need naps now because I take care of a 2 year old. But after the first two years I always got tired around the same time in the middle of the day where I could not keep my eyes open. It gets better. I also had tongue cancer and after about 1 year I was diagnosed with hypothyroidism, that is where your thyroid is slow and makes you tired. I take medicine every day and get my levels checked and doing good. Sorry I double posted.
    Best wishes,
    Linda
  • rozaroo
    rozaroo Member Posts: 665
    #9
    abbimom said:

    fell asleep in class
    That is normal. I had cancer when I was 21 and after my treatments I went back to college. I had a class at 3 that I had to drop because I was basically passing out from exhaustion during it. With time the need to take a nap and fatigue gets better. I need naps now because I take care of a 2 year old. But after the first two years I always got tired around the same time in the middle of the day where I could not keep my eyes open. It gets better. I also had tongue cancer.
    Best wishes,
    Linda

    Fatigue!
    My oncologist mentioned that it will take up to three years to not feel so exhausted! I am not surprised at all!
  • dwoythal
    dwoythal Member Posts: 4
    #10
    rozaroo said:

    Fatigue!
    My oncologist mentioned that it will take up to three years to not feel so exhausted! I am not surprised at all!

    Fatigue!
    Thank you all! This will lift my husband's spirits to know that this is his 'new normal' - and to hear that from your oncologist, rozaroo, is really comforting. This will encourage Tom not to fight the daily naps but to learn to enjoy them as much as possible. He also has a very raspy voice which doesn't bother us, along with a under chin 'wattle.' Surprisingly, the only thing that scares him is the fatigue, and I think that's because that was the only sign of anything being wrong before a big lump surfaced on his neck.
    Deb
  • abbimom
    abbimom Member Posts: 87 Member
    #11
    dwoythal said:

    Fatigue!
    Thank you all! This will lift my husband's spirits to know that this is his 'new normal' - and to hear that from your oncologist, rozaroo, is really comforting. This will encourage Tom not to fight the daily naps but to learn to enjoy them as much as possible. He also has a very raspy voice which doesn't bother us, along with a under chin 'wattle.' Surprisingly, the only thing that scares him is the fatigue, and I think that's because that was the only sign of anything being wrong before a big lump surfaced on his neck.
    Deb

    new normal
    the raspy voice is also normal for my 1st year I had spells where I lost my voice for a month. After that I would get the raspy and frog voice once in a while for about 4 years. Now my voice has not had those problems but after talking a lot my throat feels strained. It will get better just be positive! Best wishes, Linda
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #12
    abbimom said:

    new normal
    the raspy voice is also normal for my 1st year I had spells where I lost my voice for a month. After that I would get the raspy and frog voice once in a while for about 4 years. Now my voice has not had those problems but after talking a lot my throat feels strained. It will get better just be positive! Best wishes, Linda

    Deb it'll get better it just
    Deb it'll get better it just takes a lot of time. I'm not back to work yet. I was a workaholic maniac. Worked 48 hrs minimum to 65 max a week. It is scarey when you go from working 12.5 hr days to needing to sit down in the middle of trying to grocery shop for yourself. :(

    Today I went into the town of Bloomsburg and walked up and down Main Street for over an hour and then did my food shopping all in almost 4" heels. I remember last year I could hardly walk in them and had to put my arm thru my friends arm because I could hardly make it down the drive way. I was out walking around in them for five hours. Of course I'm not like I used to be. I used to be able to work my 8 hr shift in them running walls in a shoe store. (taking hundreds of boxes of shoes and putting them into the shelves).

    I'm just glad I am better than last year!!

    Thanks for posting that Rozaroo.
  • Glenna M
    Glenna M Member Posts: 1,576
    #13
    sweetblood22 said:

    Deb it'll get better it just
    Deb it'll get better it just takes a lot of time. I'm not back to work yet. I was a workaholic maniac. Worked 48 hrs minimum to 65 max a week. It is scarey when you go from working 12.5 hr days to needing to sit down in the middle of trying to grocery shop for yourself. :(

    Today I went into the town of Bloomsburg and walked up and down Main Street for over an hour and then did my food shopping all in almost 4" heels. I remember last year I could hardly walk in them and had to put my arm thru my friends arm because I could hardly make it down the drive way. I was out walking around in them for five hours. Of course I'm not like I used to be. I used to be able to work my 8 hr shift in them running walls in a shoe store. (taking hundreds of boxes of shoes and putting them into the shelves).

    I'm just glad I am better than last year!!

    Thanks for posting that Rozaroo.

    Fatigue
    I want to thank you too Roz. I am one year post treatment and still get tired easily. I am much better than last year but still need more sleep than I ever did. I wonder if part of it, at this stage, could be because most of us can't sleep through the night like we used to??? Hopefully I will be able to go out walking again soon, once the neighborhood bear goes to bed ;-) I know going for a daily walk and getting plenty of fresh air and sunshine always made me feel better.

    Deb, I understand his concern about the fatigue but please let him know that it does get better, it just takes time.

    My best to both of you,
    Glenna
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #14
    Glenna M said:

    Fatigue
    I want to thank you too Roz. I am one year post treatment and still get tired easily. I am much better than last year but still need more sleep than I ever did. I wonder if part of it, at this stage, could be because most of us can't sleep through the night like we used to??? Hopefully I will be able to go out walking again soon, once the neighborhood bear goes to bed ;-) I know going for a daily walk and getting plenty of fresh air and sunshine always made me feel better.

    Deb, I understand his concern about the fatigue but please let him know that it does get better, it just takes time.

    My best to both of you,
    Glenna

    Yep Glenna, I think that is
    Yep Glenna, I think that is a huge part of it. When you don't get to quality REM sleep your body and brain suffer the consequences. I was a lucid dreamer and would wake up and always would remember my dreams. I could change my dreams, I could wake myself up mid dream because I knew I was dreaming. Now, I hardly ever dream. I wake up too often to get to that sleep stage.
  • rozaroo
    rozaroo Member Posts: 665
    #15
    sweetblood22 said:

    Yep Glenna, I think that is
    Yep Glenna, I think that is a huge part of it. When you don't get to quality REM sleep your body and brain suffer the consequences. I was a lucid dreamer and would wake up and always would remember my dreams. I could change my dreams, I could wake myself up mid dream because I knew I was dreaming. Now, I hardly ever dream. I wake up too often to get to that sleep stage.

    Sweet & Glenna
    Sweet! I love my heel's & miss thm so much lol! Seriously it is great to hear that I will get the hang of being able to enjoy walking in them again. As far as sleeping you girl's have got it right! I sure as heck feel alot better when I get a good night's rest. But that sure isn't in the card's lately. My oncologist never say's much, but when you ask a question he will give you an answer. He mentioned the three year time frame to me out of the blue. I told him that I was not surprised. I am a realist, but then again, I think after all of this we all are.
  • Dan Garrett
    Dan Garrett Member Posts: 14
    #16
    rozaroo said:

    Sweet & Glenna
    Sweet! I love my heel's & miss thm so much lol! Seriously it is great to hear that I will get the hang of being able to enjoy walking in them again. As far as sleeping you girl's have got it right! I sure as heck feel alot better when I get a good night's rest. But that sure isn't in the card's lately. My oncologist never say's much, but when you ask a question he will give you an answer. He mentioned the three year time frame to me out of the blue. I told him that I was not surprised. I am a realist, but then again, I think after all of this we all are.

    Fatigue
    This has really been hard to deal with. Always active and never started a project that I did not stop until it was totally finished. Now I have to pace myself or I get really exhausted. Doctor says I won't start feeling myself for at least a year out of my last treatment. Hope he is right. I have good days and bad days. I just have to remember to look over my shoulder and see where I was 2 weeks ago. There is always improvement but impatience always rears its ugly head. Stay focused and remember where you've been.

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