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

CLL Support

20,607 members35,273 posts

Maybe side effect after 2 weeks on Ibrutinib?

Patc890USA profile image
23 Replies

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
zaax profile image
zaax

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

Patc890USA profile image
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.

TimHB profile image
TimHB

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

Patc890USA profile image
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 profile image
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 profile image
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 profile image
Lola69 in reply to TimHB

Scotch is a hard liquor. Careful :)

Mansy profile image
Mansy

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.

terryI_uk profile image
terryI_uk

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 profile image
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?

NooNoo14 profile image
NooNoo14

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 😀.

Kevin54613 profile image
Kevin54613

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.

Patc890USA profile image
Patc890USA in reply to Kevin54613

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.

Havemercy profile image
Havemercy in reply to Kevin54613

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!

RJR1 profile image
RJR1

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!!!!

CoBubby profile image
CoBubby

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.

joycecanada profile image
joycecanada

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???

Tvettes5 profile image
Tvettes5

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

Patc890USA profile image
Patc890USA

No. They said keep ito a minimum.

MsLockYourPosts profile image
MsLockYourPostsVolunteer

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)

Alpal11 profile image
Alpal11

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 profile image
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.

Lola69 profile image
Lola69

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

You may also like...