18 replies to this topic

[LivingWellWithCML]

Hey all,

Just wanted to do a quick survey of folks who are on TKIs and use mild sleep aids from time to time.  I've been on Gleevec 400mg for almost 2 years, and sometimes I'll sleep really well - but most of the time (especially as of late) I'm getting less than 7 hours, and as a result, I don't feel very well the next day.  Everyone is different, and my body feels like a "need a good 8 hours to feel good the next day" type.   A decent night's rest I'm sure is important when living well with CML, so I'd like to consider augmenting with a sleep aid that is gentle and doesn't cause problems with TKIs.  Rather than prescription, I'm wondering if others are having success with an OTC option that isn't too strong?  I do all of the other natural aids; I run or bike almost daily, hit the sack around the same time w/ the same routine, etc.

Appreciate any feedback!

Thanks -

[SunNsand]

I use AdvilPM if I'm having sleeping problems. I have pain issues so the Advil helps with that too.

[LivingWellWithCML]

Thanks Sun.  My understanding is that anything with either Advil or Tylenol is not recommended with Gleevec, right?  I have used AdvilPM a while ago before my diagnosis, and yes, it does work well.

Any other recommendations folks?

[Trey]

A low dose antihistimine (not including decongestant) is a good sleep aid and inexpensive if you use a generic.

http://www.insomnia....edications/otc/

[CallMeLucky]

Have you considered Weed?

[Rissa]

Yogi bedtime tea and Tazo rest tea work pretty good.  I usually use two tea bags per cup.  Both teas contain valerian root which is a natural sleep inducer. 

[LivingWellWithCML]

Not legal in Georgia .............. yet.

[LivingWellWithCML]

Thanks Rissa, I will look into that.

Has anyone here tried Melatonin?

[SunNsand]

I've tried Melatonin but it left me groggy in the morning. I'll stick with Advil.

[TeddyB]

I agree with Trey, i get really sleepy after taking an antihistimine. (I use something called Zyrtec in spring time for my allergies)

[LivingWellWithCML]

Thanks for your input, everyone.  I really appreciate it!

[Lizzybee]

I used to use Benadryl to fall asleep, but I had to stop because it was making me feel hungover the next day.  Lately, when I've tried it out, it doesn't work any more.  With my onc's permission, I started using melatonin.  It's been great with no side effects.  I usually take 3 mg.  When I was having a little more trouble falling asleep, I tried using 6 mg, but after a few days, it seemed to build up and make me tired me tired during the day, so I'm sticking with 3 mg now.

My onc will prescribe ambien, but that would be a last resort because I'm leery of the side effects.

[CallMeLucky]

No Billie, but it is legal in my state so if I wanted to I could make it happen.  Holding off for now, I have little kids in the house so I would rather not unless I find it becomes the only thing that can help me.

[cfoley1215]

After I had to go back on the Gleevec last year (tasigna apparently equals pancreatitis for me), the sleeping problems I had when I was originally on it (I'm 7 years out and I was on it until 2009) were even worse. After trying an insane amount of ambien, my GP put me on restoril. Didn't help either (neither did the concerta that we tried to make me alert enough to work).

On bosulif now, which doesn't cause me issues so I use one of the restoril occasionally if I really need it and that's it. When I run out, probably won't use anything.

Also - Gleevec has issues with Tylenol only, I believe. Mainly b/c they are both metabolized by the liver and having a bunch of both going at the same time can give you a toxic dose.

[CallMeLucky]

How long have you been on bosulif?  I'm very interested in hearing from people are taking it and how they are doing.  I've been fortunate to do well on TKI drugs but seem to take a beating on side effects with severe muscle pain problems.  I'm on 50mg Sprycel right now which isn't too bad, but my Dr has mentioned bosulif to me a few times stating that it has a very favorable side effect profile and would probably be a very good fit for me.  Curious what your experience has been.

Thanks..

[cfoley1215]

I'm having a pretty minor issue with low-grade anemia, no big deal. Iron pills don't agree with me at all, so my doc has just been giving me some intravenously at my appts. The big side effect with bosulif is diarrhea and abdominal pain. It was really bad when I first started. Bad enough that my first week I couldn't leave the house and so my dr told me to start taking it only every other day. After about a month like that, we then moved up to 2 on, 1 off for a couple weeks and then full time. I get diarrhea 3-4 times per week now, probably 6+ episodes. I've got Lomotil and Immodium, not sure if they help or not but I take them. I also have some zofran b/c the diarrhea days always seem to be major nausea days. I always take the Bosulif with or right after my breakfast to help mitigate some of the nausea.

Not really the most awesome side effects (really quite a lot of abdominal pain and discomfort on the bad days), but at least I can manage to stay awake and my brain works. Definite improvement over the Gleevec in that aspect.

[CallMeLucky]

If you don't mind me asking, did you also have stomach problems with Gleevec?  I know many people do, but I actually did not, in fact Gleevec made my digestive process a lot more regular.  So I am trying to get a gauge on if you think the bosulif is worse than Gleevec for GI issues or about the same.

Also - any muscle pain with bosulif?

Thanks for sharing the info.

[cfoley1215]

I did not have any GI issues on Gleevec. Or any of the others. Just on the bosulif.

No muscle pain in particular on the bosulif. B/c of the diarrhea, I have to watch my hydration and such so I will get some calf cramping if I'm slacking on that.