Hello everyone. I’m new here and was hoping to find an answer to my question but it seems like I’m the only one struggling with this problem.
My father has recently been diagnosed with CLL and is about to start his Ibrutinib treatment. The thing is, he’s quite a heavy drinker, an alcoholic even. I’m in my twenties and I have watched him drink heavily almost daily and it never changes. His oncologist told him he can have an occasional drink but the way I see it, it means having a beer or a glass of wine and I just can’t see my father being able to stop at one standard portion. Yesterday he said that it’s his life and nothing has to change, so I guess he wants to multi-task and take his medication while drinking the usual amount of alcohol. Last night he drank a bottle of vodka (0,7 L) in just a few hours and that’s basically how he lives. So is there any point at all for a man like him to start Ibrutinib? What could be the consequences? Should I get mentally prepared for him to have a massive bleeding or something? Or maybe there is a chance that he will be experiencing sickness that would make the idea of drinking that much unbearable? Thanks in advance and much luck and strength to everyone dealing with CLL.
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Nia_S
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I would have two glasses of wine a night before Ibrutinib. Noticed I started getting heart burn which cause a chronic cough. I pulled back to couple glasses of wine three nights a week and it helped. My point is ibrutinib mixed with alcohol caused an undesirable side effect and motivated me to pull back a bit.
I don't want to upset you but your fathers level of drinking is so extreme at this point he would have to go have through some type of rehab and gradual withdraw as if he just stopped he would get quite ill
There is quite a bit of info about alcohol withdrawal timeline
I know this but again, can't see him willingly check himself into rehab so I just hope he may reduce his alcohol consumption.
Nia,
I understand your feelings quite well. I grew up with an alcoholic mother. At 52 I can only tell you your father will stop drinking only when he wants too no one, or no situation can "make" him. Many don't stop and the results are usually fatal. None of that situation is your fault or responsibility. If and when he asks for help you can help him...probably not before.
Thanks. All members of the family had tried to talk him into making at least some changes in his life so many times through these 20+ years but nothing good so far. I know that he has to want to stop drinking so maybe CLL is a blessing in disguise in a way and will make him quit.
It will not make him quit. He hasn't reached rock bottom. All you can do is pray for him. If he starts to experience side effects from ibrutinib, and a blood test is ordered, they will see his alcohol level. I know it's hard to sit back and not "help". Has anyone ever mentioned you going to Al Anon meetings? They are for family and friends of alcoholics. 💜
ideally your father should tell his Dr about his drinking so that they can have the conversation about how this will affect his treatment and any potential/probable hazards with drinking at that level of consumption.
That probably won't happen though and I can't add any more to what others have said.
Yeah, sadly I'm sure he never told his doctor about the actual amount of alcohol he consumes. Although I guess it has to show somehow in his blood tests?
It doesn't necessarily show up in blood tests, so it's important that he lets the doctor know to adjust treatment accordingly. My father was an alcoholic and when he was going through treatment (for another illness) my mother ended up letting the doctor know about his consumption levels.
Livers are resilient and often they are ok for a long, long time with no apparent problem with results but then suddenly and with little warning the results, platelets etc can fall off a cliff very rapidly leading to a crisis, often bleeding.
Hi sorry to hear about your fathers drinking and his need for treatment for his CLL. His desire to continue heavy drinking while on Ibrutinib puts you and your family in a difficult position. It also leaves his doctor in a position of ignorance when prescribing. I have no idea what the outcome of heavy drinking would be on Ibrutinib so can’t advise. What I would suggest is you and other members of the family sit down with your dad and remind him he is not the only person effected by his decision to continue heavy drinking while on Ibrutinib. If he can’t do it for himself perhaps he can do it for others involved? It might help to remind him of the position he puts his prescribing doctor in by not informing him of how much he will be drinking while on Ibrutinib.If this falls on deaf ears you and your family members may consider approaching your fathers GP or even your own GP who may be able to enquire anonymously about the impact of heavy drinking when taking Ibrutinib on your behalf. Please keep us informed of how you progress.
It's not unusual for an active alcoholic to consider not drinking once he hits some type of low point in his life after meeting someone who is also a real alcoholic who has stopped drinking. If you contact your local chapter of Alcoholic Anonymous there will be people willing to talk to you and to your father to help. There's also a group called Al-Anon who will share information to those who have a family member who is an alcoholic.
Nia - I am so sorry! I watched my brother drink himself to death. Family and friends did everything we could come up with, but nothing helped.
My advice would be to be sure that the doctor prescribing the Ibrutinib is fully aware of the issue. I don't know the potential effects of combining that much alcohol with Ibrutinib and any prophylactic drugs your father is given .
The doctor can't discuss your father's case with you, if you are in the US, unless someone in the family is listed on an advanced directive, but he can listen. You might try to get your father to fill out an Advanced Directive naming someone in the family who can discuss his case. He can indicate his wishes on the form. It also allows someone else to speak for him if he isn't able to speak for himself at some point for whatever reason.
I would also investigate intervention programs so that should your father change his mind you are ready with the needed information and can act immediately. You work with a trained specialist who meets with family and friends first. The patient isn't usually forewarned, but brought in unsuspecting. If he agrees to accepting help the intervenor is ready to put him in a car and straight to a rehab center or flight to one if the one the family is considering is at a distance. It didn't work for my brother, but it has worked for a couple of friends, who years later are doing very well.
Please feel free to contact me through chat (pm) any time. I know how painful this is.
Thank you so much for your reply and I'm sorry for your loss. I'll be keeping in mind that I can contact you anytime. Sorry, didn't have the time to reply earlier.
Nia - Don't worry about timing here, with any comments or questions. And I'm serious about contacting me any time. If you are in the US or Canada we can talk by phone. My plan is free for both countries.
Since this is a sensitive subject that involves some besides yourself you might want to lock your post. You also might get more responses, as many don't reply to Unlocked posts.
Go to the v next to more, at the bottom of your original post, click on it, then edit. At the bottom of your original post you will be given the option of changing everyone to community only. Posts set to everyone can go anywhere - google, twitter, where ever and so can all replies. I just got a PM from someone asking me how to erase a post because a reply he had written came up on google.
The combination of Ibrutinib and excessive alcohol might cause liver enzymes to go up dramatically and the doctor would pick this up on the complete metabolic panel. It would help the doctor to know ahead of time.
I would think the biggest problem with being on ibrutinib and being a heavy drinker would be the risk of bleeding. Ibrutinib is known for causing our platelets to be less sticky though not decreased in number, so it's the function affected. I would be concerned about varices, and liver issues.
I listened to a science essay today and it talked about alcohol abuse and one of the ways of decreasing the desire to drink alcohol was a drug called naltrexone, it could help people who are heavy drinkers turn to moderate drinkers. It's not a novel approach, but one that's been studied and subsequently suppressed by the "AA" movement because it's a 180-degree different approach to alcoholism (takes the spirituality out and puts science in.)
An update for those who might be interested: it's day six and my father hasn't been drinking all week (except for a bottle of beer on Monday). So far so good, minor bleedings happen, primarily nose bleedings while sneezing. Doesn't look bothered by the absence of alcohol either. I'm pleasantly surprised...
Thank you! Seems to me he takes the whole thing seriously and takes responsibility. Now I wonder if he could have done the same thing way earlier and if all he needed to stop was a major blow like CLL.
Accept the blessing that CLL might have brought to you and your dad....my husband has quit all alcohol since he started Ibrutinib 2 months ago.....he was not a heavy drinker, but did want to give the drug a chance to work its magic. He replaced beer, with a nonalcoholic beer and says he really does not miss it!! (Doesn't work for vodka, tho.....) Best wishes that he values his health more than his booze....
Yes, at this point I see it as a blessing in disguise. It's been two weeks already and dad doesn't drink alcohol at all. Glad for you and your husband as well, best wishes!
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