14 replies to this topic

[Sunshine48]

does anyone else have issues sleeping at night while on Sprycel?? On Gleevec and Tasigna I slept CONSTANTLY felt like... now I'm sooo fatigue physically but mentally I'm not able to sleep.. I'll look at the clock and it will be 4 AM and I'll be like oh dang, I should prob try and sleep but I end up just laying there... Anyone else have this issue or have anything to kinda get them to sleep? I'm not keen on sleeping meds and like my body is seriously so exhausted and tired and I feel so run down and yawn constantly but I just can't fall asleep :-(...

[td1961]

Hi Sunshine,

Yes in deed! I've had problems sleeping on gleevec and then sprycel, and now tasigna. If it's not the side effects like cramps in my legs, it's pain in my joints and bones. Then, it could be that I'm too hot like I have a fever sometimes. Or with sprycel, I had shooting pains and numbness in my hands for a number of months. Oh, and last but not least, the need to get up and go to bathroom several times! And then there's the pounding heartbeat... It's just so much fun I can hardly stand it! There is definitely a PRICE for staying alive! Not only the expensive orphan drugs we take but the side effects they cause us.

For what it's worth though... I did have a nocturnal oxygen and full blown sleep study done and they found only slight apnea issues but then again, I'm on 3 L of oxygen at night to treat PAH (caused by the sprycel!). But maybe you should check out a logging pulse oximeter from your PCP and make sure you aren't having night time oxygen desaturation? Sleep apnea is thought to be the cause of many ills such as being overweight, having high blood pressure, frequent urination, heart problems, dementia and the big one -- the restless sleep we all know and hate! Another possibility you might want to have checked out is if you have a plueural effusion? Do you suffer shortness of breath? I had two very bad cases of PE's and that's why I'm now on tasigna. Another idea would be to get your PCP to prescribe sonata for those nights when you wake up at around 1AM and can't get back to sleep. Sonata is a short acting sleep aid specifically designed for folks with our problem and you won't wake up in a fog the next day. That's my 2 cents worth Sunshine. Hope you get some rest!

Here's hoping your life is all Sunshine!

Tracy

[Happycat]

Sunshine,

I typed you a nice long reply this morning, but then the battery on my ipad died and phwip!  It was gone.  Alas, alack.

I don't have insomnia from TKIs, but I've had it all my life.  Seriously, as a kid I used to look at the clock and break it down into prime factors, or do the nearest square root.  I even typed out my thoughts in my head when I was learning typing.  Drove me nuts!

Anyway, I'll give you some of my strategies I have learned over the years:

1)  Clock - hide it so you can't see it.  I started putting a post-it note over it so I had to do an overt act to see the time.  Then I found clocks that are not backlit, but have a button you can push so you can see the time for about 10 sec before it fades.  Love those clocks!  Anyway, make sure you can't see the clock, because if you do, you will obsess over it.  "Geez, it's 2 am and I'm not asleep yet?"  BTDT

2)  Avoid mentally challenging tasks for a good 2 h before bedtime.  I had an awful time sleeping until I finally got out of school.  My mind just obsessed on the problems I was working on.  So if you do things at night that are very mentally stimulating, stop.  Try reading, watching TV, etc.  More relaxation, less stimulation, less problem solving.

3)  Caffeine - I don't have any after 3-4 pm.  That helps a good bit.

4)  Your bed should be for sleeping - I would always sit and do my homework on my bed, or do a crossword, etc., so my brain never knew if I was trying to go to sleep, or wanted to work.  I now only allow myself to read in bed before I turn the lights out. 

5)  Routine - Establish a bedtime routine and stick to it.  So, lock up, change, brush teeth, etc., try to keep them in order and about the same time every day if possible.  This will help prepare your mind for shutdown time.

6)  Exercise - Watch how close you do this to bedtime.  I have done it as close as 3 h before bedtime, but if I get too close, it takes me awhile to come back down so I can sleep.  I even limit housework, none after 9 pm.  I think the exericse effect is different for everyone, so you may need to experiment to find a good cutoff time.

7)  Obsessions - What is your mind obsessing over as you lay in bed?  If it's the same thing night after night, try to do something to address the problem.  Instead of obsessing over what you can't control, try to have an impact on those things you do have control over.  So, if it's money, you can't control the cost of your drugs, but you can control your spending on other things.  Or, if it's worry over CML, you can't control how your body responds to the TKIs, but you can take your drugs on time, and make alternative plans (like what do I need to prepare for BMT).   I often find if I'm obsessing over a problem, the only way to stop it is to take action.  I've dragged myself out of bed many nights and spent the whole night on the computer, because I just wasn't going to sleep until I took some action on a problem (how do I help Nat with her social anxiety, how do I help Liv with her math, how do I help Em with her asthma).  It's the only way I can stop the obsessive worrying that keeps me awake. 

If you find you are getting to sleep, but the TKI is causing very vivid dreams that wake you up, talk to your doctor.  Some drugs do that, and I'm not sure of the strategies to address.  My dd had problems with one of her migraine drugs that did that, but we just switched to another drug.  They're lots of those, but the CML field is pretty small.  Might need to do something else.

HTH,

Traci

[jjg]

Yes but on Gleevec. It was very noticeable to me when I started gleevec as I was previously always an excellent sleeper and I've been off gleevec for just over a week and I'm sleeping soooo well again. This was one of the main reasons I took gleevec in the morning to try and get it as far away from sleep time as possible. When do you take sprycel?

[car-guy]

hi sunshine,i was just diagnosed in Feb. with cml now on tasigna. sleep 1 hour at a time at night it seems, also vivid dreams. forget the dreams as soon as i awake. does anyone have advise  for bone pain especially at night when resting, that doesnt help. please dont take me the wrong way. i was diagnosed early and plan on enjoying a long and healthy retirement. I look at things alot different now, with much more appreciation. so GODBLESS  to you and may we all be blogging on this sight 20+ years from now:)

[Susan61]

Hi:  I am trying to learn something from all the responses here.  I do not sleep good at all.  I am on Gleevec, but I do not think its that at all.  I  go to bed thinking about what I have to do the next day.  I worry about finances and everything else.  Then I have a overactive bladder, therefore,  I am up every 2 hours at least to use the bathroom. I look at the clock and get disgusted that I just made this trip a little while ago.  Then I cannot fall back to sleep.  My  husband works the overnight shift, and I make the mistake of having a cup of coffee with him on some nights before he goes to work which I know will keep me awake and also aggravate the bladder. Then I have these crazy dreams that make no sense, and most ot the time a nightmare from something I had on my mind earlier.

    I pray when I cannot sleep, and that helps me sometimes.  By  morning I am so exhausted like I ran a race all night.

My Arthritis pain keeps me up too, so I guess there are a lot of us with sleep issues.  Sometimes I am on the computer here after midnight checking messages.  The good thing is I know I am not alone with this issue.

[NotJack?]

Hey Sunshine,

I am on Tasigna, and I am up at night quite a bit.  I sometimes need to kick start again in the afternoon (coffee),  to keep alert for teaching early evenings.  I always try to tell myself a story, or go over a movie in my head to slip into sleep, and then my mind takes over and creates a new plot.  This puts me to sleep, but I seem to have my quota after about 4-5 hours.  Going on a good bike ride or walk/run in the evening helps extend the sleep, but my two dogs make sure to wake me at 6.  I used to sleep with the TV on, or some radio talk show if I can get one without some crazy person complaining about everything or futzing up some conspiracy.  My friend always uses a sleep machine, I think that the thunderstorm is his sound of choice.   Hope that you get some relief, you deserve it!  Jack

[Sunshine48]

Hey ya'll, thanks for the replies! I'll take em all into consideration cause it has to change lol.. I think the thought of the transplant is stressing me out and just a great but scary feeling so just overwhelming with thoughts... I'm trying though and thank you so much for the responses!

[Susan61]

Hi Sunshine:  I am sure its your thoughts about the Transplant that is making you lose sleep.  I know when I have to get up the next day for a test or doctors appointment I do not get any sleep with the anticipation.  I like Jack's idea, if you have a TV in your room put it on low so you have the sound but not loud enough to keep you awake.  When I get really tired during the day, and I really need to catch up on the sleep I lost I put my TV on low.  I sit back in my recliner, and throw a nice afghan over me.  Next thing I know I caught sometimes 2 hours sleep, and I feel so much better.  Then I go about my business to do what I have to do.  We all lead different lives, and I guess we have to work around our lifestyle to catch up on the lost sleep.  I do not have a TV in the bedroom.

How soon will you be going for the transplant?You might have mentioned it, but I forgot

[Sunshine48]

Hi Susan, I don't have the exact date yet still waiting on exact date. They just said about 4weeks ill be admitted so im assuming around that time... Ill keep yall posted... Ill try the tv thing and see how it works ,

[Susan61]

HI:  God Bless You and your in my prayers.  Try to get a good nights sleep.  I have even put on the music on the TV where you have all kinds of choices.  I do not know if you have all that on your cable or not.  I have tryed listening to Sounds of the Season, and they have some other soft music that has helped me when feeling stressed.  It has relaxed my whole body.  Let me know if any of this helps.

[NotJack?]

Hey again Sunshine,

Be sure to try both talk(movies) or travelogs,  and music.  They can stimulate different areas of the brain.  I have dyslexia, and for me music keeps my attention much more focused, and actually keeps me awake and alert.  At college in Madison, I would go to the crowded student commons to study, because I would be able to turn off the conversations and concentrate on studying.  With music, I would be so distracted, that I couldn't do anything but get absorbed into the sound.  Hope that this helps, Jack

[NotJack?]

Oh, you could also try having someone read you some of my postings,  my family seems to nod off whenever I start talking!  Jack

[Sunshine48]

LOL Jack that's hilarious! I tend to find myself singing in my head when listening to music so I try not to use that either lol. Thanks for the help, I don't fall asleep to y'all lol.

[0vercast]

I think I'm having a sleep-related issue from the Gleevec.  I've been on it for only a month.  I take my dose right before I go to bed, because if I take it in the morning, I seem to not have as much energy during the early part of the day.  My issue is not with getting to sleep or staying asleep usually, it's that I'm finding that I'm never tired enough to really want to sleep anymore.  I almost have to force myself to get some sleep.