12 replies to this topic

[sunflower]

Hi, I have been having insomnia pretty much since I started Gleevec. I know this is a rather rare side effect of Gleevec, so not sure if any of you can relate. Ambien works for me, however doctors will only prescribe it for a short time. Does anybody know of a medication I could take for the long term that will work for insomnia? Or maybe some other kind of solution?

[CallMeLucky]

Benadryl is pretty safe for continuous use.

[LivingWellWithCML]

When do you take Gleevec?  I have also had sleeping troubles since diagnosis, but I'm not sure it's directly tied to Gleevec.  I take the dose with breakfast, so I don't feel like it would impact my sleep since the amount in the bloodstream has reduced since the early morning ... but perhaps they are related.

Benadryl is a good recommendation ... I know others who have tried Melatonin supplements (3mg) with some success.

[sunflower]

I tried Benadryl and I was half awake/half asleep the entire night

[sunflower]

I take it with dinner. I have tried benadryl and melatonin with not much success. Benadryl left me half awake and half asleep and melatonin simply didn't work

[susanlathers]

Oh boy did you ever open a sensitive issue re:  insomnia and what to take

   when I was CML diagnosed 7 yrs ago I was 3 yrs into hormone deprivation after breast cancer surgery.  A dear Dr. asked me how I sleep.   A problem every patient wants their Dr. to be concerned about.  Of course my answer was "not much and I've tried every natural product out there and know all the behavior methods known to science." He very compassionately said, "with another cancer to battle you need your sleep to regain your health, I can give you this wonderful little pill that will help you, do you want to try it?"   Thus began my journey with Ambiem that feels like it will never end.   So many times I have tried to get off of it and can't. I do not do well mentally with NO sleep, by the 3rd night I am ready to check my self into to the psych ward. Where of course, they will give me a sleep med.  I have tried switching to other prescribed sleep medications, all of which have the most horrible side effects.  That same Dr. told me 2 wks ago he no longer prescribes Ambiem.

   My sleep problem became even bigger when I switched to Tasigna 3 yrs ago.  Not only is sleep at night a waking nightmare, sleep during the day or sleeping in to make up for it is a total impossibility. Between the Ambiem and the very inadequate sleep even with it, I have come to dread night time.

  I am sorry to conclude this with no good advice.  Sleep is important but is it worth getting hooked permanently on a medication..... that is something only the person suffering can answer.  I think if I could do over, I would request a sleep study to evaluate my sleep before resorting to prescribed sleep medication.

   I would be very interested in other people experience.

Susan

[Rissa]

Valerian root helps me.  You can get it in capsule form, or you can find it in some herbal bedtime teas.  I like Tazo brand "Rest" tea and Yogi brand "Bedtime" tea.  I use two bags per cup and add some honey.  Definitely makes my eyes droop.

[0vercast]

Ever since I started on Gleevec a year and a half ago, I've had moderately severe insomnia. You're right; it's a very uncommon side-effect, so it's hard to find good info on it. I've been taking an Ambien almost every night since then, with ideal results. I've tried other over-the-counter sleep meds, but they seem to take about 10-12 hours to wear off, most notably diphenhydramine, which is the main sleep-inducing ingredient in both Benadryl, Unisom, and Tylenol Simply Sleep.

Ambien works like a charm for me, so I see no reason to try other RX sleep meds. Obviously, I'd prefer not to take any meds to sleep, but it is what it is. If I were to try others, I'd go with the ones that have the shortest half-life, like Sonata. I have a problem falling asleep. Staying asleep in not an issue.

[Susan61]

I am on Gleevec for a very long time, and I have never thought my Gleevec was the cause of Insomnia for me.

I have found that I have so much on my  mind when I go to bed at night, that I just cannot relax.  I also used to love my coffee in the evenings.  I cut out the coffee, and I have been sleeping better.  To this day, if I go to bed with my  mind heavily laden with problems then I toss and turn till I get exhausted.  If I had a decent day, then I can fall asleep pretty fast.  See if there is anything else that could be causing this for you.  Hope you get some good sleep soon.

Susan 61

[sunflower]

Hi 0vercast..thanks for the feedback. I was wondering what kind of doctor has prescribed you Ambien for a long-term basis? Or do you just keep going to different doctors to get it prescribed? I'm asking because every doctor who has prescribed it to me will only do it for a few months maximum. I wouldn't mind doing the Ambien long-term, but like I said most doctors cut me off after a few months.

[sunflower]

You're the second person who has mentioned Valerian. I might try it.

[sunflower]

Thank you all for the feedback.

[0vercast]

My oncologist is prescribing it for as long as I need it. He doesn't seem to think it's a terrible idea, but I can tell he'd prefer if I didn't take it. By the way, he's a well respected hem/onc of 30 years; reputedly the best in this town of 100,000.

I wouldn't jump around to different docs to get it. That would be foolish and self-defeating; the act of a drug addict.

My initial Gleevec side-effects have gone away one by one the course of the last 17 months. I expect this one will too. Maybe not. We'll see.