cancer survivor sleep problems

Eil4186
Eil4186 Member Posts: 949
edited March 2014 in Breast Cancer #1
Hello everyone, well I think I have posted previously about my sleep problems that started after chemo. I have not had a good night's sleep in over 2 years. Before cancer I used to sleep like a log period. Well I have mentioned it a couple of times to my oncologist and today he said that it is a common problem with cancer patients and especially those who have had breast cancer. They think that it may be caused by chemo induced changes in brain chemistry----the same thing that causes chemo brain etc...This is interesting because I had always read that chemo molocules are too large to cross the blood/brain barrier, but anyway this what he said the theory is at this point in time.

So today he suggested I enter a clinical trial that is being done at another hostital(Strong Memorial). They are trying behavior mods and a drug. There are 4 arms and one gets a placebo, another the behav. mod and drug,etc.....So I am meeting with the study coordinator soon. The trial lasts 7 weeks. They can't guarantee though that if there is an improvement in my sleep during the trial that it will last after the trial is finished. I am not keen on taking a drug that effects my central nervous system but I am pretty desperate at this point. My lack of recuperative sleep is really effecting my quality of life. I wake exhausted everyday.

Well, I will keep you posted if I actually join the trial.
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Comments

  • Marcia527
    Marcia527 Member Posts: 2,729
    Good luck Eil. Whatever you
    Good luck Eil. Whatever you do I hope you get some zzz's. I have found I can't sleep anymore unless I have a small fan blowing on me. I don't know if it's the buzz or the blowing air.
  • Aortus
    Aortus Member Posts: 967
    Good luck with the trial if you choose it
    Eileen, I wish you the very best with your fight for a good night's sleep. My brother has never been a chemo patient, but he has suffered for years with a condition which is pretty much like you describe - hardly any sleep, and almost never any uninterrupted sleep. The doctors he's been to don't know what causes it or what to do about it, but at times it makes his life a hell. Doses of anti-depressants have helped, but he doesn't want to stay on them because "he's not mentally ill" (although everyone else in our family is). I really, really hope you find something that works and helps you attain the rest and recovery you so deserve.

    Joe
  • phoenixrising
    phoenixrising Member Posts: 1,508
    Eil, sleep is so critical to
    Eil, sleep is so critical to our well being. My husband is the same. If I could give him anything it would be a few nights of a really good sleep. If you choose to participate I'm sure you will learn a lot from the researchers even if you are in the placebo arm. Good Luck to you.
    love
    jan
  • djteach
    djteach Member Posts: 273
    sleep
    I have had the same problem since 2005. I am now using Ambien and it is doing the trick for me. It is non-narcotic and not physically addictive. I had about a week of strange dreams but that went away. I am also able to adjust slowly back to my normal sleep times and patterns. I was a morning person for 48 years and I hope to be one again soon. At 52, I'm ready for something to go back to normal, even if it is just my sleep patterns. I wish you luck in your quest and hope you find a resolution soon. Not sleeping sucks!

    Gentle Hugs,
    Donna
  • lynn1950
    lynn1950 Member Posts: 2,570
    Never enought sleep
    Eil, Like you, I feel I never have enough sleep. I take drugs to fall asleep and sleep through the night that way, but generally not enough hours to awake feeling truly rested. I had never heard that chemo molecules are too big to cross blood/brain barrier. I would love to know more about that! Sleep is so important to how we can actually survive as survivors! Frankly, an unrested me is a confused, discombobulated, totally unreliable female dog (insert correct word) me. I hope you can find some relief. Lynn
  • dorothyt
    dorothyt Member Posts: 103
    lynn1950 said:

    Never enought sleep
    Eil, Like you, I feel I never have enough sleep. I take drugs to fall asleep and sleep through the night that way, but generally not enough hours to awake feeling truly rested. I had never heard that chemo molecules are too big to cross blood/brain barrier. I would love to know more about that! Sleep is so important to how we can actually survive as survivors! Frankly, an unrested me is a confused, discombobulated, totally unreliable female dog (insert correct word) me. I hope you can find some relief. Lynn

    What I would give for a good
    What I would give for a good night sleep. I have not had a good night sleep in a year.
    Eil, I know how you feel. I hope everything work-out.
  • Jeanne D
    Jeanne D Member Posts: 1,867
    I needed sleep too!
    So, my oncologist put me on a sleeping pill which is amazing! It puts me to sleep and I usually sleep straight thru, and, I don't wake up groggy. It also stopped my headaches that I was having. Good luck to you Eil!
  • rjjj
    rjjj Member Posts: 1,822 Member
    Jeanne D said:

    I needed sleep too!
    So, my oncologist put me on a sleeping pill which is amazing! It puts me to sleep and I usually sleep straight thru, and, I don't wake up groggy. It also stopped my headaches that I was having. Good luck to you Eil!

    Hi Jeanne
    Do you know what the name of this pill is?
    Thanks
    Jackie
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    rjjj said:

    Hi Jeanne
    Do you know what the name of this pill is?
    Thanks
    Jackie

    Hi, Jackie
    Hi, Jackie, are you having problems sleeping? I believe Lunesta is what my sister takes as needed.
  • Jeanne D
    Jeanne D Member Posts: 1,867
    rjjj said:

    Hi Jeanne
    Do you know what the name of this pill is?
    Thanks
    Jackie

    Good Morning Jackie :)
    Yes, the sleeping pill that was prescribed for me is Trazodone 50 mg tablets. It really does work. And like I said, I used to wake up with headaches sometimes, and, now I don't. It helps to put you into the REM sleep. ( rapid eye movement ) Sounds funny, but, that is what I was told. lol Good luck Jackie if you start on it. Let me know..ok?
  • Eil4186
    Eil4186 Member Posts: 949
    Jeanne D said:

    Good Morning Jackie :)
    Yes, the sleeping pill that was prescribed for me is Trazodone 50 mg tablets. It really does work. And like I said, I used to wake up with headaches sometimes, and, now I don't. It helps to put you into the REM sleep. ( rapid eye movement ) Sounds funny, but, that is what I was told. lol Good luck Jackie if you start on it. Let me know..ok?

    Is trazadone a narcotic?

    Is trazadone a narcotic?
  • Eil4186
    Eil4186 Member Posts: 949
    Thanks to all of you for the
    Thanks to all of you for the encouragement! There are sooo many cancer survivors that cannot sleep. My onc. said that the problem is especially prevalent with those that have had breast cancer. Maybe the chemo chemicals that are used for bc are more prone to causing the brain changes that he mentioned. All I know, is I am glad that they are realizing that chemo does have an effect on the brain and is the cause of the cognitive and sleep problems that so many of us are experiencing. Hopefully these studies will help provide ways of treating and helping with all of this. Will keep ya posted. Eil
  • chenheart
    chenheart Member Posts: 5,159
    Sleepy? I think that's one of the 7 Dwarves
    Eil~

    I gave up on sleeping after chemo as well; I can fall asleep, but I never stay asleep! I have earbuds in my ears and my radio tuned to a talk station so as to have something to do during the night...especially between the hours of midnight and five AM. I can pretty much gauge how much sleep I am getting by which talk-show host I am listening to at any given hour!

    I seem to function well without sleep; I get up at 6 AM, make coffee so it is brewing for Reggie when he gets up at 6:30, as by that time I am out for my morning walk. If I keep doing things and not sit down, I do fine! But, if I sit at about 2PM...look out! I am down for the count.

    Anyway, I go to bed at about 11, watch the news and then Letterman's monolog. And then.....well talk radio! Sheesh, I'm not sleeping much, am I??? Good thing I still have Reggie with his sleep-inducing qualities. And NO I don't mean he's boring! LOL

    I would take a sleeping pill, but I have a phobia about that. Dumb, I know, but I do. I live in California, and have a fear that not If, but When the next earthquake hits, I won't be alert enough to take cover. And that's the truth!

    I hope you have great success with the clinical trial~I know you'll keep us posted!

    ZZZZZZZZZZZZZ

    Hugs,
    Claudia
  • ritazimm
    ritazimm Member Posts: 171
    Sleep
    WOW Eil,
    I cannot imagine not sleeping! I would REALLY be a basket case. I do take Ativan to relax me so that I can sleep and I do sleep very well, but I am always tired even so. I don't know how I would be able to function if I didn't sleep! My heart goes out to you.

    I'm one that hates to take meds to be able to sleep but I hope that they can find something that will work for you.

    Before I started chemo I also read that chemo does not cross the blood-brain barrier. That is a bunch of crap! I fully believe that it is 'old school' information. I have been seeing a therapist lately and she said that the research is showing that this is no longer thought to be correct. There are too many people that have 'chemo brain' type effects that they no longer think that the drugs fully bypass the brain as previously thought.

    I actually am a clinical trial coordinator and I am hoping that you get some good results. Usually there is some type of 'rescue' option when a study has a placebo arm so hopefully that will be the case in this study. If not, keep in mind that in any study, you are free to stop a study at any time for any reason. So if you are suffering even more by being in the study, I would encourage you to withdraw consent so that you can get a known treatment. Youy body needs sleep as well as rest.

    Good luck!!

    Rita
  • Eil4186
    Eil4186 Member Posts: 949
    ritazimm said:

    Sleep
    WOW Eil,
    I cannot imagine not sleeping! I would REALLY be a basket case. I do take Ativan to relax me so that I can sleep and I do sleep very well, but I am always tired even so. I don't know how I would be able to function if I didn't sleep! My heart goes out to you.

    I'm one that hates to take meds to be able to sleep but I hope that they can find something that will work for you.

    Before I started chemo I also read that chemo does not cross the blood-brain barrier. That is a bunch of crap! I fully believe that it is 'old school' information. I have been seeing a therapist lately and she said that the research is showing that this is no longer thought to be correct. There are too many people that have 'chemo brain' type effects that they no longer think that the drugs fully bypass the brain as previously thought.

    I actually am a clinical trial coordinator and I am hoping that you get some good results. Usually there is some type of 'rescue' option when a study has a placebo arm so hopefully that will be the case in this study. If not, keep in mind that in any study, you are free to stop a study at any time for any reason. So if you are suffering even more by being in the study, I would encourage you to withdraw consent so that you can get a known treatment. Youy body needs sleep as well as rest.

    Good luck!!

    Rita

    I know, well my oncologist
    I know, well my oncologist did say that they now know that chemo can and does change your brain chemistry. I am not sure exactly what that means but I am glad that it has been discovered. No wonder I can't sleep and forget even basic words. One more reason for my anxiety..............
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    Eil4186 said:

    I know, well my oncologist
    I know, well my oncologist did say that they now know that chemo can and does change your brain chemistry. I am not sure exactly what that means but I am glad that it has been discovered. No wonder I can't sleep and forget even basic words. One more reason for my anxiety..............

    Talk to your doctor about
    Talk to your doctor about prescribing something for you, a sleeping pill, if only temporary. If you aren't sleeping now, you need something to help you. You need your sleep! A simple sleeping pill is not going to hurt you..it will only help you to get the much deserved sleep your body craves and needs.
  • rjjj
    rjjj Member Posts: 1,822 Member
    Jeanne D said:

    Good Morning Jackie :)
    Yes, the sleeping pill that was prescribed for me is Trazodone 50 mg tablets. It really does work. And like I said, I used to wake up with headaches sometimes, and, now I don't. It helps to put you into the REM sleep. ( rapid eye movement ) Sounds funny, but, that is what I was told. lol Good luck Jackie if you start on it. Let me know..ok?

    Moopy and Jeanne
    Hi Moopy I have never tried luenasta,,,but i have been on trazadone before and forgot how very well it helped me sleep. It is an anti-depressant, the DR. as i remember said that by getting a good nights sleep (REM) depression is lifted considerably, plus it has the anti-depressant qualities for the brain. Like a sleeping pill and anti-depressant all in one. I remember i really liked it but thought it made me to sleepy (i didn't want to sleep back then,) so i switched to celexa (just an anti-depressant) Thank you Jeanne for the reminder. I am going to ask Dr. to switch me back.
    Hugs
    Jackie
  • Eil4186
    Eil4186 Member Posts: 949
    ritazimm said:

    Sleep
    WOW Eil,
    I cannot imagine not sleeping! I would REALLY be a basket case. I do take Ativan to relax me so that I can sleep and I do sleep very well, but I am always tired even so. I don't know how I would be able to function if I didn't sleep! My heart goes out to you.

    I'm one that hates to take meds to be able to sleep but I hope that they can find something that will work for you.

    Before I started chemo I also read that chemo does not cross the blood-brain barrier. That is a bunch of crap! I fully believe that it is 'old school' information. I have been seeing a therapist lately and she said that the research is showing that this is no longer thought to be correct. There are too many people that have 'chemo brain' type effects that they no longer think that the drugs fully bypass the brain as previously thought.

    I actually am a clinical trial coordinator and I am hoping that you get some good results. Usually there is some type of 'rescue' option when a study has a placebo arm so hopefully that will be the case in this study. If not, keep in mind that in any study, you are free to stop a study at any time for any reason. So if you are suffering even more by being in the study, I would encourage you to withdraw consent so that you can get a known treatment. Youy body needs sleep as well as rest.

    Good luck!!

    Rita

    Cute kitty cat:0)
    Rita, I love your kitty!
  • Eil4186
    Eil4186 Member Posts: 949
    dorothyt said:

    What I would give for a good
    What I would give for a good night sleep. I have not had a good night sleep in a year.
    Eil, I know how you feel. I hope everything work-out.

    Dorothy, sounds like we are
    Dorothy, sounds like we are in the same boat!
  • Jeanne D
    Jeanne D Member Posts: 1,867
    rjjj said:

    Moopy and Jeanne
    Hi Moopy I have never tried luenasta,,,but i have been on trazadone before and forgot how very well it helped me sleep. It is an anti-depressant, the DR. as i remember said that by getting a good nights sleep (REM) depression is lifted considerably, plus it has the anti-depressant qualities for the brain. Like a sleeping pill and anti-depressant all in one. I remember i really liked it but thought it made me to sleepy (i didn't want to sleep back then,) so i switched to celexa (just an anti-depressant) Thank you Jeanne for the reminder. I am going to ask Dr. to switch me back.
    Hugs
    Jackie

    You are more than welcome Jackie!
    I hope it helps you again. It really does work for me. I don't wake up all groggy or anything. I just wake up feeling like I got some sleep. And, I never wake up with headaches like I used to sometimes. Good luck!