1 year out of treatment, still exhausted easily.

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nowalkinthepark
nowalkinthepark Member Posts: 1
in Head and Neck Cancer #1
Hi Everyone
I have been a "lurker" here for 18 months. Don't know exactly why i never participated before but
now i feel like i am finally getting some perspective on this whole cancer journey. I was diagnosed early Jan 2011 with T2N2Mo StageIV NPC. Did 33 Rads 6 rounds of chemo (3 cisplatin, 3 carbo with taxol and 5FU)at MSKCC. Finished treatments late June 2011. Negative PET scans since then. My whole year of 2011 was a major struggle, but i have being making very good progress in the last six months. I have many of the typical lingering side effects (dry mouth, swallowing issues, etc) but the one that effects me most is probably the Chronic Fatigue. My thyroid #s are ok and no other medical complications exist. I am exhausted daily by performing just regular family/work duties. I had so much energy prior to treatments and wonder if I will ever return to that level. Being 38yrs old I really hope it gets better. This exhaustion is sudden onset and lying down is the only recourse when it happens. I know most H&N cancer patients have suffered from chronic fatigue during treatments and for months afterwards but 1 year out of treatments I was kind of expecting to have more energy. Anyone else have a similiar experience? Did it resolve itself? I realize many have far worse concerns right now and do feel fortunate to be able to vent about this comparatively small issue.
Thanks Aido

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  • TheDane
    TheDane Member Posts: 27
    #2
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    Me too
    I am 21 months out of treatment and the fatigue and brain fog were only getting WORSE.
    Turned out my thyroid got nuked good. Over the past 9 months it has gone to almost zero function.
    BUT
    Cancer Treatment Center of America lists FATIGUE as the number one post treatment issue and describes it in their literature as a fatigue "That is not cured by sleep or rest".
    You wear out fast - like an old cell-phone battery - right? ME TOO!
    Double check that thyroid anyway. Have it re-checked at your next bloodwork visit.
    Here is the list of must-haves:
    L-Carnitine - amino acid - every day, taken by itself on a mostly empty stomach in order to have it not get neutralized by other proteins.
    D-Ribose - Mixed in with smoothies or protein shakes. This will also help energy and alertness.
    Athletes use both of these a lot.
    Look into topical or "LUGOL'S" type IODINE supplimenting daily too.
    Finally - RITALIN.
    Yep - RITALIN. My onchologist totally surprised me when he gave me this. But the look on his face and the tone of his voice told me he already knew it was going to work.
    It can be a tough stimulant on your body if you are stimulant sensitive...But it WILL wake your brain up.
    I do ALL of the above daily, and I have had ENORMOUS improvement in just a couple of weeks. But I have to do ALL of them...Every day.
    Could be worse...right?
    ~Cheers!
  • katenorwood
    katenorwood Member Posts: 1,912
    #3
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    Fatigue !
    Hello !
    You have had a hard road the past year ! And this is a valid issue for us all ! I don't have any advice on this one as of yet....but I'm sure others will chime in ! I will be listening in for myself. Healing time for our bodies is a rough issue ! Let us know if you find something that works for you ! Warmest regards, Katie
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
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    feed me
    Nowalkinthepark,

    As a fellow “lurker”, welcome. I like to consider myself a “passive participant”. While I hunkered down in my recliner my wife did all the searches for the illusive “magic thread”.

    Are you getting enough calories and protein? I think (other than being out of shape from the last 8 month bus ride) my lack of energy is directly related to proper nourishment. I can feel myself pick up after I eat or more properly drink a smoothie. Additionally, my blood tests have been coming back as ok, so far.

    In all truthfulness, I think it (fatigue) may always be with us to a degree.

    Best,

    Matt

    15 weeks post
  • hwt
    hwt Member Posts: 2,328 Member
    #5
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    CivilMatt said:

    feed me
    Nowalkinthepark,

    As a fellow “lurker”, welcome. I like to consider myself a “passive participant”. While I hunkered down in my recliner my wife did all the searches for the illusive “magic thread”.

    Are you getting enough calories and protein? I think (other than being out of shape from the last 8 month bus ride) my lack of energy is directly related to proper nourishment. I can feel myself pick up after I eat or more properly drink a smoothie. Additionally, my blood tests have been coming back as ok, so far.

    In all truthfulness, I think it (fatigue) may always be with us to a degree.

    Best,

    Matt

    15 weeks post

    I agree with Matt, I think
    I agree with Matt, I think nutrition plays a big role.
  • robinleigh
    robinleigh Member Posts: 297
    #6
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    hwt said:

    I agree with Matt, I think
    I agree with Matt, I think nutrition plays a big role.

    fatigue
    Nutrition comments are great. Also, I went to a lecture on cancer related fatigue while my husband was in treatment at Emory. The psychiatrist said the best way to fight fatigue was to exercise. She said you may not feel like even getting up but once you start doing something, the energy will build. The other critical need is SLEEP and that is a tricky one because of all the mouth issues. Hope you are able to get that vital sleep at night!
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #7
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    robinleigh said:

    fatigue
    Nutrition comments are great. Also, I went to a lecture on cancer related fatigue while my husband was in treatment at Emory. The psychiatrist said the best way to fight fatigue was to exercise. She said you may not feel like even getting up but once you start doing something, the energy will build. The other critical need is SLEEP and that is a tricky one because of all the mouth issues. Hope you are able to get that vital sleep at night!

    sleeeping good
    Robinleigh,

    Sleep is the one thing I do well. It was hit or miss during the initial blast of “you have cancer”, but now that things have settled down, I sleep great. I have gotten use to staying up too late, but that is another thread. Don’t get me wrong, I often sleep walk to the bathroom every night due to all the water I drink while awake. I am kind of like a night watchman making his rounds, I get a chance to peak outside and make sure all is well.

    Best,

    Matt

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