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

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Maybe side effect after 2 weeks on Ibrutinib?

Patc890USA
Patc890USA

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.

23 Replies
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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

Patc890USA
Patc890USA
in reply to zaax

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.

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

Patc890USA
Patc890USA
in reply to TimHB

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

Philipoc
Philipoc
in reply to Patc890USA

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.

Newdawn
NewdawnAdministrator
in reply to Philipoc

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

Lola69
Lola69
in reply to TimHB

Scotch is a hard liquor. Careful :)

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.

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

debralynn
debralynn
in reply to terryI_uk

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?

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 😀.

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.

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.

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!

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!!!!

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.

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???

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

No. They said keep ito a minimum.

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)

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.

Patc890USA
Patc890USA
in reply to Alpal11

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.

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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