Just wondering. 3 weeks ago, I started Ibrutinib treatments and everything seems to be going as planned ( no side effects of any kind). I guess my question is regarding having anything to drink (wine) while I'm under treatment? I really miss having a glass of wine with my wife at night. I can't seem to get a clear answer from the PA that I see at MDA. Any reply will be helpful.
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pwebster
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Hi Pwebster, unfortunately alcohol is a definite no with Ibrutinib. There are a lot of things to avoid while taking them and your team should of given you a list of things to avoid. I believe alcohol can possible cause bleeding but I’m not 100% percent on potential side effects.
My oncologist discourages it. She said an occasional glass of wine is fine but she prefers I don’t have alcohol, seville oranges or grapefruit. I started Ibrutinib in January and have no side effects. I do miss an occasional glass of red wine and an ice cold beer on a hot day after working outdoors but not enough to take any chances. When everyone else is having red wine I have cranberry juice in my fanciest glass. I feel too good to chance it with alcohol. It’s great to feel normal thanks to Ibrutinib.
This is the first time that I heard that alcohol is a no-no with Ibrutinib (which I have been taking for 18 months). I don't drink much alcohol, but when I do, I haven't noticed any problems or issues, beyond the usual silly behavior if too much is taken. Of course, this is a question for a properly qualified person to answer.
Though I note that Waldenstrom’s Macroglobulinemia Foundation of Canada (WMFC) states that "In general, drinking alcoholic beverages should be kept to a minimum or avoided while taking ibrutinib." wmfc.ca/wp-content/uploads/...
Everything I have read has indicated there are no issues with Ibrutinib and limited alcohol consumption. This issue has been addressed specifically on another forum by Dr. Richard Furman, who was an early pioneer in Ibrutinib Clinical trials, and has had over 7 years experience with Ibrutinib. He has stated that "there is no reason to avoid alcohol due to ibrutinib". The BC Cancer Agency in Canada has this on their website about the issue, "The drinking of alcohol (in small amounts) does not appear to affect the safety or
usefulness of ibrutinib." On the Pharmacyclics website in the Imbruvica Patient Information sheet (which is 40 pages long in the expanded version), there is no mention of alcohol avoidance. I have been on Ibrutinib for over 4 years and am part of the Resonate Clinical trial, which was used to get FDA approval for CLL in the U.S., and there has never been any mention of alcohol avoidance, only grapefruit products and Seville oranges. I think many doctors discourage patients who are in treatment from alcohol consumption, but it seems to me in this case that this is a personal choice issue, and not a drug interaction issue.
Teeholf47, Wow, huge accomplishment and courage on your part for participating in a trial that lead to FDA approval. We are all so thankful!!! Continued good heath to you!
My oncologist and CLL specialist advised that there was no problem in moderate alcohol consumption alongside Ibrutinib. I followed this advice for two years, without difficulty.
Well, the varing replies must give you no definitive answer to your conundrum. I have been on it for five and a half years and at the outset asked my professor in charge of the trial about alcohol, he suggested that it be taken in moderation on a daily basis but that it had no effect on taking the drug. When I posed the question regarding his definition of moderation, he felt a whisky or two in the evening or 250 ml of wine would be no problem, in fact, much the same as if I was not on Ibrutinib. I continued in this vein for four years as my levels had dropped to almost normal so I decided to try leaving out the alcohol other than on special occasions such as birthdays etc., my levels have been well within normal since but this may have nothing to do with alcohol consumption which had been a bottle of whisky a week and a bottle of red wine at the weekend. my advice would be to keep it to special occasions and then make it a good one like a 95 Petrus or similar, afterall we all like it but it is poison as my GP tells me.
Regarding the grapefriut and oranges, don't go there, they can create serious problems, particularly if eaten within two hours either way of taking the drug. I was hopitalised twice after eating a tangerine. I was rushed in by ambulance, I thought I was going to die. So nothing citric, even Seville Orange Marmalade.
Hi I'm so glad you are doing well on Imbruvica. I was wondering if you have had the awful cramping and spasms from the drug.seeing you have been taking it for five years. I'm besides myself these cramps are so painful, hands and ankles and calf muscles. Please shed some light for me. Starting drinking pickle juice . Also, on potassium and magnesium . Imbruvica has helped so I really don't want to give it up Thank you
Stay with it, I think we all get the cramps, paricularly in the early stages. Take a litre of water before bed, keep your legs and feet warm, your doctor may help but don't take anything strange unless you have checked it out. My cramps got less and less and stopped after eighteen months and now maybe once or twice a year but nothing like when I first started on I brutinib. To be honest, I have always had cramps but not to the extent I had them initially on Ibrutinib. We are all different and some may not suffer at all.
Hi Corkyrissa, I experience terrible cramping on occasion as well. It comes in phases and then disappears for a while. Hydration can help, but the latest bout I had happened right before my appt. last week. My doctor at MDA felt I could reduce from 2 to 1 pills per day. I'm hoping that helps with the cramping and my numbers stay in control. I also take magnesium and tumeric.
I think "nothing citric" is too strong. I was told no grapefruit or Saville Oranges (or marmalade which is made with Saville oranges) Beyond that, I have no fruit restrictions
Best to check with your own doctor for her particular recommendations
My pharmacy asked me to refrain from alcohol at the beginning of my Ibrutinib this past June. The reason was to minimize the various factors involved with any side effects not because it was contraindicated. So I refrained for the first two months which was how long it took for the cramps to largely go away. I then tried imbibing at social occasions and nothing happened. I now have a glass or two of wine most days.
I also was told by Dr Furman at Cornell and Dr Cheson at Georgetown, both CLL experts, that alcohol in moderation on ibrutinib was ok. I occasionally have a glass of wine and have had no issues.
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