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Irishgypsie
Irishgypsie Member Posts: 333
edited March 2014 in Head and Neck Cancer #1
My Radiation ended last Monday and I had my last chemo dose on Wednesday and I still feel like like ****! Don't seem to be getting better; just weaker. maybe it's the chemo it's only been 4 days. I'm scared!!! I'm so, so tired of this! Please tell me that it will get better soon! :(

Charles
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  • SASH
    SASH Member Posts: 421 Member
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    After your done
    Radiation continues to work even after treatment stops. Think of it like left over cooking from a microwave oven. It takes some people a few months some less some more to start feeling like themselves once they are done with treatment. Don't get discouraged it will get better just give it time.
  • Hal61
    Hal61 Member Posts: 655
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    Fatigue
    Hi Charles, glad to hear you're through treatment. I'm three months out of treatment and still fighting fatigue. I was going for short walks or bike rides, but have slowed them down lately. My days can be with more or less energy, but overall I'm gaining. Don't rush it, you're young and your strength should return to you soon, but it well may take a couple of months or more. Fatigue is an ongoing factor for a lot of us. I'm signed up for a telephone conference call on the subject on the 21st sponsored by the ACS. They have phone talk and discussion several time a month of a variety of subjects. If anyone is interested you can contact your local ACS for info. Keep in there Charles, it will get better.

    Hal
  • rozaroo
    rozaroo Member Posts: 665
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    Hal61 said:

    Fatigue
    Hi Charles, glad to hear you're through treatment. I'm three months out of treatment and still fighting fatigue. I was going for short walks or bike rides, but have slowed them down lately. My days can be with more or less energy, but overall I'm gaining. Don't rush it, you're young and your strength should return to you soon, but it well may take a couple of months or more. Fatigue is an ongoing factor for a lot of us. I'm signed up for a telephone conference call on the subject on the 21st sponsored by the ACS. They have phone talk and discussion several time a month of a variety of subjects. If anyone is interested you can contact your local ACS for info. Keep in there Charles, it will get better.

    Hal

    Charles
    I hear you! I kept on asking my nutritionist if it was going to get any better. It took well over the three month mark for me to feel enough energy to go out shopping. I was sick of feeling exhausted & went through alot of post treatment issues. Some of us take longer than other's. Your body needs to rest & build itself up after the hell it has been through. I never thought I would get better. Now I can shop for over three hour's straight lol.
    Hug's Roz
  • JUDYV5
    JUDYV5 Member Posts: 392
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    Feeling Better
    Radiation continues working after it is done. I was told by a doctor and a nurse (at different times) that 2 weeks after the treatments you will start to feel a little better.
    I finished on June 8th. It was pretty much true. I have good days and bad days - but I do feel a lot better then I did that first week.
  • Unknown
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    JUDYV5 said:

    Feeling Better
    Radiation continues working after it is done. I was told by a doctor and a nurse (at different times) that 2 weeks after the treatments you will start to feel a little better.
    I finished on June 8th. It was pretty much true. I have good days and bad days - but I do feel a lot better then I did that first week.

    This comment has been removed by the Moderator
  • Scambuster
    Scambuster Member Posts: 973
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    The 'J' Curve Chaz.
    Hi Charles,

    Your situation is sort of normal for this time of your journey. It is maybe the worst time and especially with your expectations being that the pain and suffering would stop once you finished treatment. Unfortunately it doesn't. I was in bad shape after treatment and had to be re-hospitalized after 10 days out so I know very well how awful it is. You will get through it man.

    If you get real bad and emotionally traumatized, call your Docs. You may easily fall into a depression so watch for signs, : crying, not wanting to get out of bed, change in moods and helplessness ++. The docs can treat this.

    Also if you are not sleeping, this can aggravate your condition. You need your sleep and plenty if you can.

    Hang in there Charles, it may be a couple of weeks yet before you round the bend. Don't measure improvement by the day as your condition will fluctuate for a while. Measure by the week.

    We are all thinking about you during this tough period. Just know it will get better and you will look back on this rough period from a much better place.

    Scam
  • Landranger25
    Landranger25 Member Posts: 210 Member
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    The 'J' Curve Chaz.
    Hi Charles,

    Your situation is sort of normal for this time of your journey. It is maybe the worst time and especially with your expectations being that the pain and suffering would stop once you finished treatment. Unfortunately it doesn't. I was in bad shape after treatment and had to be re-hospitalized after 10 days out so I know very well how awful it is. You will get through it man.

    If you get real bad and emotionally traumatized, call your Docs. You may easily fall into a depression so watch for signs, : crying, not wanting to get out of bed, change in moods and helplessness ++. The docs can treat this.

    Also if you are not sleeping, this can aggravate your condition. You need your sleep and plenty if you can.

    Hang in there Charles, it may be a couple of weeks yet before you round the bend. Don't measure improvement by the day as your condition will fluctuate for a while. Measure by the week.

    We are all thinking about you during this tough period. Just know it will get better and you will look back on this rough period from a much better place.

    Scam

    Treatment done!
    After my last chemo and rad it took about 10 days for me to really start feeling better. Hopefully you have been swallowing through everything. Water or whatever. Staying hydrated will make you feel much better. Someone once described that you measure improvement from this not by the day but by the week. Keep going! Kudos on completing all of this. Things will get better soon!

    Mike
  • davidgskinner
    davidgskinner Member Posts: 81
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    Treatment done!
    After my last chemo and rad it took about 10 days for me to really start feeling better. Hopefully you have been swallowing through everything. Water or whatever. Staying hydrated will make you feel much better. Someone once described that you measure improvement from this not by the day but by the week. Keep going! Kudos on completing all of this. Things will get better soon!

    Mike

    The end was the worst
    The end of chemo and radiation was the absolute worst for me as well. I felt really bad for a few weeks after I was finished (April 2010), and that really bummed me out because I had done the hard part, or so I thought. What helped me was to give myself a definite purpose during those awful days. I made myself a schedule for each feeding tube session, medication, etc. and kept to it. Counted every calorie and I even made myself take a certain number of swallows of water every 15 minutes. It worked for me. At least I think it did. Probably having a combination of good nutrition/hydration and a purpose helped the healing.
    But it does get better...
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    The end was the worst
    The end of chemo and radiation was the absolute worst for me as well. I felt really bad for a few weeks after I was finished (April 2010), and that really bummed me out because I had done the hard part, or so I thought. What helped me was to give myself a definite purpose during those awful days. I made myself a schedule for each feeding tube session, medication, etc. and kept to it. Counted every calorie and I even made myself take a certain number of swallows of water every 15 minutes. It worked for me. At least I think it did. Probably having a combination of good nutrition/hydration and a purpose helped the healing.
    But it does get better...

    At least a Month
    Charles,

    It's gonna be close to a month before you start noticing much change probably. At least consistantly....hang in there, your body has to get built back up a little before you start feeling better. Right now it's doing everything it can to get the junk out of you that you have been going through the last several weeks, and with very little fuel to do that.

    John
  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    Marathon
    Charles,

    You are in a Marathon and it is mile 25 now. Your mouth is dry, your legs feel like rubber and you want to lay down and take a nap. You don't want to take another step. But something tells you, that you can't do that just yet. You want to get to that finish line.

    You can see the top of the banners just over the crest of the next hill. Your stride is a bit shorter now, basically, placing one foot in front of the other. Not at a good pace like the beginning, when your were taking 3-4 foot strides, now at 1-2 foot steps at a time. You have hit the WALL, your fatigue level is flat, sleep is the only thing you can think of. Where is that water, my throat is so dry, like a Desert.

    In reality, it will be about 4-5 weeks, maybe sooner that you will have one good day per week. Then it will be two days per week. My Radiation Oncologist told me that I might have to deal with the Fatigue issue for nearly one year. I found that I had to deal with it longer then that. But as it has been mentioned before, each of us react differently then the next person. Your nearly there, don't quit now. You can do this.
    Remember, there are only 3 things you can't do. 1- slam a revolving door 2- strike a match on a wet bar of soap and 3- can't put used toothpaste in a used toothpaste tube, anything else you can do. Now get down and give me 20. : )

    My Best to You and Everyone Here
  • CajunEagle
    CajunEagle Member Posts: 408
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    MarineE5 said:

    Marathon
    Charles,

    You are in a Marathon and it is mile 25 now. Your mouth is dry, your legs feel like rubber and you want to lay down and take a nap. You don't want to take another step. But something tells you, that you can't do that just yet. You want to get to that finish line.

    You can see the top of the banners just over the crest of the next hill. Your stride is a bit shorter now, basically, placing one foot in front of the other. Not at a good pace like the beginning, when your were taking 3-4 foot strides, now at 1-2 foot steps at a time. You have hit the WALL, your fatigue level is flat, sleep is the only thing you can think of. Where is that water, my throat is so dry, like a Desert.

    In reality, it will be about 4-5 weeks, maybe sooner that you will have one good day per week. Then it will be two days per week. My Radiation Oncologist told me that I might have to deal with the Fatigue issue for nearly one year. I found that I had to deal with it longer then that. But as it has been mentioned before, each of us react differently then the next person. Your nearly there, don't quit now. You can do this.
    Remember, there are only 3 things you can't do. 1- slam a revolving door 2- strike a match on a wet bar of soap and 3- can't put used toothpaste in a used toothpaste tube, anything else you can do. Now get down and give me 20. : )

    My Best to You and Everyone Here

    Well Dang.......
    that wore me out. Think I'll go take a nap. :)
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Par for the course
    Hey, Charles;

    I completed my rads and chemo, and felt very very poorly for four or five weeks after treatment ended. (In fact, I felt worse than I had felt during treatment.) My oncologist told me that most folks take at least four weeks to "turn the corner" and that seemed to be true for me.

    Have patience. Things will slowly improve. Count the weeks rather than the days.

    Deb
  • Pam M
    Pam M Member Posts: 2,196
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    Par for the Course

    "Please tell me that it will get better soon!" Define "soon".

    We're with you - my docs told me the last week of rads and the next three would be the worst part for me, then I'd see improvements in spurts. Guess they'd played this game before. I, too was let down to not see even a tiny bit of improvement after treatment, even though they'd told me to expect none.

    I can tell you that by six weeks out, I was MUCH better. Napping less, eating lots of things (after no solids by mouth for a few weeks), and "correctly" tasting most. Not to mention reduced pain and healed skin. I will say my recovery did take a step back in some areas, but I've regained most of the lost ground.

    Hard to tell you to be patient, when I wasn't (and am not). "Hang in there" sounds so lame, but do it, and know we're pulling for you.
  • Pam M
    Pam M Member Posts: 2,196
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    MarineE5 said:

    Marathon
    Charles,

    You are in a Marathon and it is mile 25 now. Your mouth is dry, your legs feel like rubber and you want to lay down and take a nap. You don't want to take another step. But something tells you, that you can't do that just yet. You want to get to that finish line.

    You can see the top of the banners just over the crest of the next hill. Your stride is a bit shorter now, basically, placing one foot in front of the other. Not at a good pace like the beginning, when your were taking 3-4 foot strides, now at 1-2 foot steps at a time. You have hit the WALL, your fatigue level is flat, sleep is the only thing you can think of. Where is that water, my throat is so dry, like a Desert.

    In reality, it will be about 4-5 weeks, maybe sooner that you will have one good day per week. Then it will be two days per week. My Radiation Oncologist told me that I might have to deal with the Fatigue issue for nearly one year. I found that I had to deal with it longer then that. But as it has been mentioned before, each of us react differently then the next person. Your nearly there, don't quit now. You can do this.
    Remember, there are only 3 things you can't do. 1- slam a revolving door 2- strike a match on a wet bar of soap and 3- can't put used toothpaste in a used toothpaste tube, anything else you can do. Now get down and give me 20. : )

    My Best to You and Everyone Here

    Very Well Said
    Thanks
  • Greg53
    Greg53 Member Posts: 849
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    Pam M said:

    Par for the Course

    "Please tell me that it will get better soon!" Define "soon".

    We're with you - my docs told me the last week of rads and the next three would be the worst part for me, then I'd see improvements in spurts. Guess they'd played this game before. I, too was let down to not see even a tiny bit of improvement after treatment, even though they'd told me to expect none.

    I can tell you that by six weeks out, I was MUCH better. Napping less, eating lots of things (after no solids by mouth for a few weeks), and "correctly" tasting most. Not to mention reduced pain and healed skin. I will say my recovery did take a step back in some areas, but I've regained most of the lost ground.

    Hard to tell you to be patient, when I wasn't (and am not). "Hang in there" sounds so lame, but do it, and know we're pulling for you.

    Hang in there Dude!
    Irish,
    Hang in there bud. I was in the same place as you not long ago and I didn't think it would end. The time flies by fast and you'll be doing better before you know it. The 2 weeks post treatment was the worst for me also. 2 weeks to the day after, I woke up to find I finally felt like a human being again. Every day has gotten better since then. It will get better! Keep us in the loop.
    Positive thoughts coming your way!
    Greg
  • Irishgypsie
    Irishgypsie Member Posts: 333
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    Greg53 said:

    Hang in there Dude!
    Irish,
    Hang in there bud. I was in the same place as you not long ago and I didn't think it would end. The time flies by fast and you'll be doing better before you know it. The 2 weeks post treatment was the worst for me also. 2 weeks to the day after, I woke up to find I finally felt like a human being again. Every day has gotten better since then. It will get better! Keep us in the loop.
    Positive thoughts coming your way!
    Greg

    New Question?
    Hey, Thanks for everyone's replies! I truly, truly thank you from the bottom of my heart!! :)

    Have new question? Right the tough part is getting sleep, but it seems that I have constant secretions; not necessarily thick but constant. I know I'm not swallowing like normal right now; so I have constant spit..using a spit cup and wash cloths to wipe mouth. But the trick getting sleep and drool/spit build up. I have noticed that when I was using the pain meds it dried my mouth and allowed me to fall asleep eventually for a hour or two. Should I try benadryl? Also, what about the liquid mucinex? Thanks! Your Rochester Gypsie! :)

    Charles
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
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    New Question?
    Hey, Thanks for everyone's replies! I truly, truly thank you from the bottom of my heart!! :)

    Have new question? Right the tough part is getting sleep, but it seems that I have constant secretions; not necessarily thick but constant. I know I'm not swallowing like normal right now; so I have constant spit..using a spit cup and wash cloths to wipe mouth. But the trick getting sleep and drool/spit build up. I have noticed that when I was using the pain meds it dried my mouth and allowed me to fall asleep eventually for a hour or two. Should I try benadryl? Also, what about the liquid mucinex? Thanks! Your Rochester Gypsie! :)

    Charles

    nights
    Got so that I didn't want to sleep long stretches- due to the mucous build-up during that time. Still have the spits in the AM, and I'm 15-months post-treatment. Sleeping in a recliner was better than a bed, for me, during treatment, and I figured gravity was playing into it.

    kcass
  • CajunEagle
    CajunEagle Member Posts: 408
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    New Question?
    Hey, Thanks for everyone's replies! I truly, truly thank you from the bottom of my heart!! :)

    Have new question? Right the tough part is getting sleep, but it seems that I have constant secretions; not necessarily thick but constant. I know I'm not swallowing like normal right now; so I have constant spit..using a spit cup and wash cloths to wipe mouth. But the trick getting sleep and drool/spit build up. I have noticed that when I was using the pain meds it dried my mouth and allowed me to fall asleep eventually for a hour or two. Should I try benadryl? Also, what about the liquid mucinex? Thanks! Your Rochester Gypsie! :)

    Charles

    Liquid Mucinex
    Charles, I tried using that Mucinex and using it with Boost Plus in the peg tube. As I remember, the Liquid only came in Children's format, so it took about three times the dosage to be effective. And to be honest, It was not all that effective. And....I KNOW.....when will this sptting junk ever stop, you say. It seemed like it went on forever for me, but eventually it slowed to only a half a box of Kleenex a day instead of 3 or 4.

    Larry
  • lady4darknight
    lady4darknight Member Posts: 90 Member
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    hang in there
    Hi, I am just 2 weeks post today but I can tell you for me the first week was bad but this week has been better. I am able to get up and about for a little bit each day which is helping. I was told this would be expected but didn't realize it would be like this. Just take it slowly. I was told it will take a couple of weeks for the radiation to quit working in your body until you start to feel better so for me I am just counting the days down post. Hang in there, you are not alone.
    Debbie
  • chris731
    chris731 Member Posts: 24
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    New Question?
    Hey, Thanks for everyone's replies! I truly, truly thank you from the bottom of my heart!! :)

    Have new question? Right the tough part is getting sleep, but it seems that I have constant secretions; not necessarily thick but constant. I know I'm not swallowing like normal right now; so I have constant spit..using a spit cup and wash cloths to wipe mouth. But the trick getting sleep and drool/spit build up. I have noticed that when I was using the pain meds it dried my mouth and allowed me to fall asleep eventually for a hour or two. Should I try benadryl? Also, what about the liquid mucinex? Thanks! Your Rochester Gypsie! :)

    Charles

    Suction Unit
    I slept in a recliner and had a portable suction unit nearby. When I would get a build up, I stick the yankauer tube in my mouth and the suction unit would suck all that junk out. If you're having sleeping problems, ask your doctor for some Ativan. It'll make you sleep.