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SunnyCA profile image
24 Replies

Can you take melatonin if you’re on Ibrutinib?

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SunnyCA
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24 Replies
Canuck901 profile image
Canuck901

Take Passion flower drops by Vogel , they work better

aremmick profile image
aremmick in reply toCanuck901

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

TimHB profile image
TimHB

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.

Philipoc profile image
Philipoc in reply toTimHB

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

Canuck901 profile image
Canuck901 in reply toPhilipoc

Melatonin leaves you groggy , passion doesn’t

SunnyCA profile image
SunnyCA in reply toCanuck901

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

Canuck901 profile image
Canuck901 in reply toSunnyCA

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

Awksom profile image
Awksom in reply toTimHB

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

TimHB profile image
TimHB in reply toAwksom

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.

SunnyCA profile image
SunnyCA in reply toAwksom

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.

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

Tvettes5 profile image
Tvettes5 in reply to

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

Kevin54613 profile image
Kevin54613

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.

cll2013 profile image
cll2013

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.

barger1951 profile image
barger1951

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

AdrianUK profile image
AdrianUK in reply tobarger1951

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

barger1951 profile image
barger1951 in reply toAdrianUK

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.

SunnyCA profile image
SunnyCA in reply tobarger1951

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

Canuck901 profile image
Canuck901 in reply tobarger1951

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

TimHB profile image
TimHB in reply tobarger1951

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?

SunnyCA profile image
SunnyCA in reply toTimHB

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.

Nanno77 profile image
Nanno77

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.

Hoffy profile image
Hoffy

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

Be well,

Hoffy.

fell profile image
fell

Yes!

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