Alochol and CLL treatment

[OaktownA]

My husband will be starting Acalabrutinib at the end of this week. I've read that alcohol use should basically be avoided while on Acalabrutinib; his doctor (who is European) felt that while obviously excessive or binge drinking should be avoided, an occasional drink now and then would not be harmful. What have others heard/been told/practiced while on treatment? I really want my husband to be able to feel some sense of "normal" when we are able to have a socially safe gathering with friends, but also don't want him to do anything risky.

[lankisterguy Volunteer]

Hi OaktownA,-

Please use this link to see the 155 previous times that alcohol was discussed related to CLL.

healthunlocked.com/cllsuppo...

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I believe the general consensus is that the BTK inhibitors put some added load on the liver, so moderation is strongly suggested. In the past, many of the clinical trials were monitoring the liver functions closely, so some trials prohibited alcohol, but those concerns for the BTK inhibitors seem to have relaxed since approval. ( This may not be as true where the Pi3K inhibitors like Idelalisib/Zydelig are involved ) .

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In addition, for each clinic visit, blood testing usually includes a complete liver panel, so if the doctors detect signs of extra stress on your husband's liver, those results should give an early warning.

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I have a history of erratic ALT/SGPT levels, and when it goes above normal, the doctors immediately ask about how much alcohol I consume, but my answer is nearly none (one drink per month). That is one of the standard tests in a typical liver function panel.

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Len

[cajunjeff]

When I asked my doctor at MD Anderson about whether I could have a couple glasses of wine at night with my ibrutinib, he told me it was mandatory for me to do so, true story. I confess I am prone to have over followed his advice on certain special occasions like birthdays, weddings and odd numbered days of the month.

[The-Man-with-a-Plan in reply to cajunjeff]

CajunJeffI'm with you! I'm not taking any medication right now but, if I was and got a ringing endorsement from my hematologist to imbibed in moderation, I be enjoying wine all the time.

Enjoying 'Fruit of the Vine'!

[zaax]

At then end of the day it's mostly water which helps the kidneys filter out the detritus of dead cell detritus out of the blood

[ironjohn]

My specialist told me not to drink any alcohol as it’s hard on your bone marrow. And I’m on watch and monitor.

Best wishes

John

[happyclappy]

I started Acalabrutinib ten days ago. There's nothing I'd like more than to get down the pub with friends but I'm still trying to avoid people, let alone alcohol. I'm sure a couple of pints of Guinness won't do any harm but I'll see how the first 6 months go, then, hopefully, paaaarty!

[BallyB in reply to happyclappy]

As a frequent traveler to Ireland, I am quite familiar with the fragrant side effects of Guinness! I concur with your conclusion.

[Pageboy]

I don’t want to say it is ok but I am very much in the school of a little bit of what you fancy does you good. I am on Acalabrutinib five months and my doctor is aware I enjoy a few glasses of wine (or whatever) at the weekend. He’s cool with it. My liver tests are fine and I drink lots of water. I am conscious not to drink at least 30mins either side of my evening Acala, however. But life is for living the best way you can IMO.

[BallyB]

All my labs are now normal after 8 months on Acalabrutinib , with the exception of Igg2. I have a couple of small beers every afternoon, as I have for the past 50 years. This is not medical advise, only my experience. I think the concern with alcohol may be GI bleeds, but that is just a guess. I have a limited number of years left and I don't want to live like a monk. Oh wait, monks have wine!

[Rt2000]

My specialist said it was OK. This is my own theory, but I take my Imbruvica in the morning and enjoy some wine in the evening. That way I figure the liver is not overburdened dealing with both at the same time. I also spread out other meds I may take. Has not been a problem in the 4 years I’ve been on Imbruvica. Everything in moderation.

[stevesmith1964]

Hi, I have been a moderate/ heavy drinker most of my adult life. I was diagnosed stage 4 in November straight to Obinutuzumab and Ibrutinib. I probably drink more than I should 3 to 4 bottles of red wine a week plus a few beets ( Friday to Sunday) , dry Monday to Thursday. I drink 3 liters plus of water a day. Liver results are rock solid and remain normal. I see it as a balance and I understand the risks, I suspect I will drink less as the months go by. I am 56 and a full time dad to my 3 and 1 Yr olds.

[BeckyLUSA]

While I was on Ibrutinib, I was told it was ok unless my liver numbers went up. I only drank about 4 glasses of wine a week. The second month on the drug, they did climb a bit. I was told not to drink at all for a while, and I abstained for a couple of months. When I again started having a glass of wine with dinner, I had no further problems.

[sweatbee]

When I was diagnosed in 2019 I asked my original oncologist, my second opinion oncologist and my CLL specialist about a glass of wine at night. All said it was fine. However, I actually only have a couple of glasses a week. (Seems like time for the first glass this week.)

Hal