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CLL Support Association
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Maybe side effect after 2 weeks on Ibrutinib?

So I posted this morning that I just hit two weeks on Ibrutinib with no side effects. Now last night I had a beer I'd never had before and I didn't like it and didn't finish it. So today I had my favorite IPA and a Guinness (I'm from Dublin and love it) and I threw both out because they tasted so bad. Is this a known side effect? Boy I hope not.

This happened while I on was on meds for Pneumonia but went away after I stopped the meds.

Pat.

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Mmm leave the alcohol out for 2 months as your liver has a lot to do getting rid of the dead CLL cells

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Not really what I want to hear but it could be what I should do. But others have written and said they have a few drinks a week and that’s what I usually do.

I contacted the person managing the trial I’m on at The National Institutes of Health and she said hadn’t heard of anyone having this problem.

Pat.

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Hmm. Not me. 8 weeks on ibrutinib and I haven't lost my taste for scotch! Never had a BETTER reason to drink! ;-)

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That’s the way I feel about beer so I hope it’s temporary. Glad you enjoy your scotch.

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Make a decision Pat, about which is MORE important to you. Alcohol or LIFE. I too am from Dublin, and never struggle with this reality.

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Ooo that’s a bit harsh Philipoc. I too enjoy a few drinks socially and would hope Ibrutinib could be safely tolerated with a sensible amount of alcohol.

Regards,

Newdawn

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Scotch is a hard liquor. Careful :)

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My CLL specialist told me no alcohol for a few months. I am on ibrutinib+venetoclax. My liver and kidneys are on overdrive from these drugs.

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Hi Pat, taking ibrutinib certainly changed my taste, wines and beers all tasted more acidic, off ibrutinib now and taste gradually recovering, God bless, Terry

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So glad to hear your taste is back. Even gladder to hear you can get off Ibrutinib. I thought once on I, you couldn't get off. Is this not the case?

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My taste for food has completely changed since I have been on Ibrutinib 4+ months. Unfortunately I can't drink alcohol due to other meds but I no longer enjoy salads, fruit etc., in fact anything healthy 😀.

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Yes, you are correct. The Ibrutinib changes your taste for alcoholic drinks. I used to love red wine and hosted wine tastings at my house. Since starting Ibrutinib 2 and a half years ago, I no longer like the taste of my favorite wines.

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I’m really sorry to hear that. I don’t drink a lot but I really enjoy my beers. I brew my own also. So I hope it doesn’t last.

Pat.

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Funny you should say that- I've given up alcohol for the time being ( on Ibrutinib for past four weeks ) but last night I took a sip of my husband's red wine and it tasted ghastly!

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As with everything side effect related to Imbruvica... we all seem to react differently.

I continued with my near daily beer ( usually one) along with my bourbon from day one. Imbruvicas results were nearly immediate with my nodes back to normal size in less than 2 weeks. I should have waited to renew my drivers license so my photo wouldn't look like I had ten ping pong balls under my chin.

Now two years in, all is well. Perfect blood numbers... still enjoying my beer and bourbon although I must admit I never did develop a taste for Guinness ( or other dark beers)....could that be a negative side effect of Imbruvica? Cheers!!!!

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I had changes in taste also. Things tasted salty. I use to love my meat very rare, and no more! I waited a month before I had a drink, as I wanted to see what was the new norm with taking IB. Happy to say that hasn't been an issue.

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I have experienced a "weird" good side effect. About 10 years ago I was in a nice perfume store and suddenly noticed that I couldn't smell. Very disappointing :-) A few weeks ago I suddenly realized that I can smell again. Strange but true :-) IBRUTINIB???

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Hey, no alcohol while on Imbruvica, didn't your Dr. inform you of that.?

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No. They said keep ito a minimum.

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My taste for anything alcoholic changed after cytoxan years ago and while I used to enjoy reasonably salty (as opposed to sweet) foods, I still find that with some foods I only taste the salt now. (No ibrutinib)

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My doctor said minimal alcohol and I had a small glass of a really nice white wine the other night. It tasted delicious but I was totally plastered after just half! Probably best to steer clear but quite fun. Cheap date from now on by the looks of things.

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I've been back on my beer for a while now because I'm off Ibrutinib. I had a very bad allergic reaction to it. I was only on it for two weeks but it seemed to have started to work by then. I stopped in late July and my numbers have been steady since and no need for treatment. But as we all know with CLL that can change fast.

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Sometimes I have rose wine or POP 🍾 champagne. Funny as I never drank before went 25 years no alcohol hated the taste but now like. >>> presently on imbruvica

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