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CLL Support Association
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Sleep deprived

Can you take melatonin if you’re on Ibrutinib?

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Take Passion flower drops by Vogel , they work better

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Where do u get your drops and how many do u take?

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My doctor told me today to try melatonin to help sleep, and I'm on obinutuzumab with ibrutinib, so I'd say it's OK.

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Melatonin is completely natural and isn’t listed as having any potential interactions with the medications you mentioned.

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Melatonin leaves you groggy , passion doesn’t

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I agree just took one melatonin last night and was super sleepy in the morning so have ordered the Passion flower drops.

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Passion flower drops are awesome and no sleep hangover , clears the mind of stress

I use them and it’s so much better than melatonin

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I’m curious since I may be placed on the same combo of drugs. Are you having any side effects? Thanks

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Everybody responds differently but after my first 2 infusions I got slammed with a massive debiltating "hangover" that had me bedridden for 36 hours, but that meant it was working so I welcomed it. Third infusion complete opposite - got a surge of energy and most symptoms GONE! As I write this in my 4th week, I feel better than I've felt in years. Easy bruising and bleeding seems to be universal among all ibrutinib users, mine's very slight. Struggling with insomnia, however, but that pre-dated treatment.

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I’m just on Ibrutinib no combinations Side effects for me for the first 7 months were joint pain, cramping and spontaneous bruising but much of that subsided.

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The thing to know about Melatonin is they come usually in 5mg or 10mg pills but you only need about 1mg, no more than 2mg to help promote sleep. Renee often takes it for sleep but she breaks up a 5mg into 1/4th pieces.

Scott

The funniest thing about CLL...my whole life I was never a good sleeper...last 6 months I been sleeping like a baby....still don't wake up feeling rested though...go figure

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Need to off set melatonin by not taking it for a period of time, then start up again, as you body makes melatonin naturally

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Hi, I have been taking Ibrutinib for a few years and I do take a melatonin about once a week to help me sleep. Seems to be OK.

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My Oncol. approved it but it didn't help me sleep. You do have to let it build up a bit, meaning it is not like a sleeping pill with immediate reaction. I tried it for 3 weeks and it didn't make a difference. You could be different so try it out.

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I tried Melatonin, not much effect on me. Two things (I live in CA also) that work for me. One, meditation and two CBD salve, wont get you high and its legal in CA. I put a dollop of it on my hands front and back and I sleep really well. It just relaxes me enough to get a sound night of rest. Been on Imbruvica for about 10 months.

Good luck and Cheers,

Steve

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Melatonin does vary a lot. I understand only some brands really have enough to work.

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You have to be really careful when using Melatonin....look up dangers of using. The drug is not dangerous as it naturally occurs in our body for sleep regulation, but once you start taking it regularly it can mess with your body's own ability to produce it naturally and you end up with a never ending spiral of sleep depravation.

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That’s good to know - I’m going to try Passion flower drops.

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I heard the CBD oral tabs are great for sleep but they are not legal in Canada. I have a friend in Seattle and his mother uses them and loves them

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My hem-onc and 2 CLL specialists I've seen all recommended CBD, but my trial doc hasn't approved it (yet) and everything that passes my lips has to be approved by him. Just started melatonin - hopefully that'll start working as it builds up. (No effect on first night.) Fingers crossed. By the way, I noticed choices varied from 1mg to 10mg with most on the shelf were 3mg so that's what I chose. Thoughts, anyone?

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I’m on a trial too - so would have to get permission for CBD too I guess. I took 5mg and was out like a light - woke up a bit sleepy but am fine now. But going to try Passion flower drops next.

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I've been taking 1 mg melatonin for years...never had a hangover or grogginess from it...I live in the US and it's hard to find that small dose.

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I use 5HTP from Costco to help sleep. I took with imbruvica,

Be well,

Hoffy.

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Yes!

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