11 replies to this topic

[JoshLee]

Hi All,

     I wish I could say I wouldn't be writing unless I needed some serious help.... Because I ask questions all the time! I am just wondering if any of you have delt with insonmnia at ANY POINT on ANY of the TKI drugs? I am about 6 months into this lovely disease and have been dealing with sleepless nights on and off for stretches of time. I am on one right now and frustrated. I actually skipped my Tasigna last night cause I though that's what was keeping me awake....No dice. I have been taking lorazepam to fall asleep and while that works, I don't enjoy taking more than one drug AND my tolerance for it is increasing and I have to take more and more of it to get the desired affect...Which probably means I am becoming addicted and need to ween myself off. Deep down I think this is a mental thing. It's hard for me to relax and not feel like I need to have myself ready and alert for battle. I am probably doing myself more harm than good. I think....Any suggestion on sleep or stories of sleeplessness would be greatly appreciated  Thanks in advance -Josh Lee

[lala]

Good morning!  You poor thing.......not being able to sleep is torture!  Rarely does that happen to me, but when it does and only lasts fora FEW minutes, I go crazy and think of those who can't sleep at all.  I am on Gleevec so I don't know anything about T.  Someone will answer this later.....just wanted to tell you I understand how hard this must be on/for you.  Anxiety can certainly keep you up.....I have a friend who rarely sleeps because her brain will not "shut off".  Have you looked into meditation or other ways to relax?  I hope you aren't lying awake worrying about your cml.  I get tired of having a chronic disease, but try to remember chronic is ok!  . Never hesitate asking for support from this group....we all have received help from it when we needed it.  Try to grab a nap today......Lala

[valiantchong]

I am having the same problem on Gleevec for 10 months... could not sleep till late at 2 am.... I did try to run a few rounts at nite at 11 pm, it still could not help.... sometimes I try to wear myself real tired a few days then only can sleep after 12 am... May be counting sheep or chanting could help ??

[lala]

Also, anxiety and depression go together....it is always ok to see someone for help in these areas....my brother suffered from very serious depression.  And suffered is the word.  You are young.....find a counselor if needed.....do whatever is needed so you can feel better......Lala

[Trey]

The TKI drugs are not widely viewed as causing insomnia directly.  But the diagnosis of CML shakes up the world for the person involved, so anxiety is a normal reaction.  Then the TKI drugs can have pain associated with them, which can disrupt sleep.  It could take some time to get to a place where you sleep like before, so don't beat yourself up over it for now.  It gets better over time for most people.

[DIona]

Hello! I was diagnosed almost one year ago and have been taking Tasigna (150mg - two in the morning and two in the evening) regularly. I never considered the insomnia I've experienced as being related until I read this. I, too, have bouts of sleeplessness but never put it together as medication related. As this disease is still faily new to me, I thought it was part of the deal....not thinking it may be the Tasigna. I'm 45, a mind-blowingly happily married woman with a 21 year old son at home. Still working, although (I'm an IS super-user for a hospital) from home more and more often. Very fatigued by the afternoons. Insomnia related to Tasigna? Interesting....I thought it was just my crazy, goofy wouldn't-change-a-thing life...

Curious what others will say on this subject.

[Susan61]

HI:  First let me say do not skip a dose of your medication.  I am on Gleevec, and I can honestly say that I do not stay up at night worrying about my CML.

I do feel my insomnia and anxiety is just from depression of everyday life.  I cannot sleep at night, and when I do fall asleep I am constantly waking up throughout the night.  By morning I am totally exhausted, and tend to sleep in a little later than I want to.

    I am sure there are many of us who do not sleep well.  Look at the situation of our country and finances etc.  I do not want to start taking a sleeping pill on top of all my other medications.  I am just looking for a better way to relax.  My husband is going through terrible insomnia right now also, and his doctor is starting him on Lunesta this week.  I really do not think its your Tasigna.  You might have some issues of worry besides your CML that is doing this to you.

Figure out what it is, and then ask your doctor for advice.

Susan 61

[JoshLee]

Thanks for all the well wishes and support, everyone. I definitely think it's my worries over CML keeping me awake. I was sleeping just fine a few months ago and then the Doctor ran some tests a few months ago and the results were all wonky and then they had to be redone and then everything turned out fine, but my peace of mind was definitely rocked and it never really returned. I am doing pretty well to on my medicine. I am at 2/20 at 5 months, which is pretty good. I am not a speed demon, but I'll take it. I just have to keep telling myself to enjoy my life while I have it. It's hard when you just want to get better and get rid of cancer. I am definitely an anxiety person. I still spend way too much time online researching CML, but at this point...I am responding to treatment, I have a new and better onc. that has treated multiple CML patients, I have a really supportive family, and great career aspirations. I have a lot to be thankful right now, especially these TKI's. I just forget that sometimes and choose to grind against my new "normal" and just pray that my old life comes back....Not going to happen. Hopefully skipping a dose wasn't a terrible decision. I honestly did it because I didn't know what else to do! I just wanted to sleep and that was the only thing I could think to do. Back on my meds today and praying for a better night of sleep tonight. Thanks again for all the support. I couldn't stay sane with out all of you! Much love and continued health and wellness to all of you. -Josh

[Susan61]

Hi :  You just said it all. You have been doing good, you have a supportive and loving family, plans for the future, and its all going to happen for you.

Read some of my older posts if you can about when I was diagnosed in 1998, and their were no TKI's.  There was only one treatment available or you got the bone marrow transplant.  Well the treatment of Interferon did not work for me, and I had no match for the BMT.  Talk about insomnia and going nuts.

I was on the computer constantly searching for answers.  They had me going all over the place to be evaluated for the BMT, and I did not want to do it.

They had me on Hydrea tablets everyday just to keep those cancer cells from getting worse.  Then I saw the clinical trial for Gleevec, got in it and it worked.

I always Thank God in most of my postings, because I know that is how  I made it as far as I have.  I used to count my Christmas Celebrations wondering if I would see another one.  I did that because I was diagnosed on Christmas in 1998, and I swore I would not see another one to be with my husband and daughter and family.   I Plan on spending Chrismas #14 which includes the year of my diagnosis.  You will be fine.

Get Some Sleep.  I pray sometimes until I fall asleep when my mind is on overload with all kinds of thoughts.

Susan 61

[Taylor]

Josh,

I feel like you and I are very similar in regard to our CML...we're both about the same age and started about the same time and we even have some of the same issues.

It was weird for me; the first two months or so I was fine, then I had two very big panic attacks; one that sent me to the ER (I didn't know what was happening having never experienced such a thing, so I thought it was the dreaded Long QT); and another that kept me up all night on a work night.  Both instances were tied to having too much caffeine and then having a disturbance afterward; for me, the first time was too much coffee and a hot shower without eating, plus about to propose to fiancee; the second time was too much coffee at 8PM then being woken up an hour after falling asleep by a loud text message.

Since then I've battled anxiety and I have barely been able to touch caffeine.  Anxiety built up and up, worrying about long QT, the diagnosis, being engaged, starting a new job, and so on.  The point I'm getting at is that I never had anxiety during my life and then I was suddenly finding myself waking up in the middle of the night several times with a racing heart, whether I had a nightmare or not.  It was scary.  It has begun to subside (I'm even handling caffeine again now in small amounts) and I no longer really wake up from nerves or with a high heart rate in the middle of the night.  However, I still find myself waking up about 45 minutes after I fall asleep.  I'm not sure, but I think it could possibly be related to the Tasigna hitting the blood stream since I take it right before bed.  I'm still trying to experiment but due to my schedule and the fasting requirements it has been difficult to do this.

That said, I would try a few things to try to rule out anxiety.  A bit before bed I take a dissolvable magnesium supplement; this one is flavored raspberry-lemon.  It helps with cramps and bone pain I've found, and you drink it warm so it helps relax you.  Depending on bladder size though, don't drink too much before bed.  Also, you might have to go to Bed & Body Works or something but get some lavender spray that you can spray on your pillow or sheets.  This really helped me within a few nights of use.  I have also found taking an after dinner walk alone really helps out as well.  This has helped except for waking up within one hour of falling asleep, but this may be habitual.  I just don't know how to break the habit. 

Anyway, I bet a lot of it is anxiety related, as I've found.  I have had good EKGs and I finally realized, regarding the Long QT (I bring this up because it was my subconscious fear), that if I'm not dead yet I won't be.  And my CML results have been good.  So I finally decided that I was tired of having anxiety.  Once I did that it really helped my sleeping tremendously.  Anyway, hope this advice helps you as well.

Taylor

[WoofWoof]

I can relate to this very well. Insomina has plagued me with both Gleevec & Tasigna, I'm sure it's stress related- just can't turn off all the switches at night. I've found Bombay Sapphire gin and tonic water late in the evening really helps to cure what ails you for sleeping. Also ask your dr. for an Ambien script if it really gets bad. We need a good nights sleep to help us heal.

[grannyd]

I am also taking tasigna, at first I had a really bad time trying to sleep, woke up about every 30 minutes, yuck!!! I was taking ativan twice a day. After I got adjusted to having this dreaded CML, my anxiety has been less. I took ativan at bedtime only for a couple of months. Now, I don't take it anymore. I try to keep busy during the day & not dwell on CML, although it isn't easy, I find i sleep much better. I wouldn't skip a dose of tasigna, I know that I have to take it no matter what!!! I pray you find peace from anxiety. As time goes by it does get easier!! granny d