I have a basic question for our group. Is is alright to have a drink or two each week, or should we abstain completely?
Years ago I used to have a drink or two every night to end my work day, and then more on the weekends. These days I visit my Son every Sunday, and we share one to two drinks. Then during the week I usually have one drink on a couple of nights between Monday and Friday. If my Wife and I go out to dinner, which might be one night a week, I'll have one drink. If I've done that however, it is usually the one of the two mid week drinks I allow myself.
My question is if I'm drinking too much for those with our condition? I enjoy what I'm doing, and I don't want to stop, but if the overbearing opinion is I have to stop completely I'll consider it.
Carl
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wizzard166
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There's no absolute contraindication based on our diagnosis, like liver disease has. The decision would depend on a number of factors relative to you, personally. Your doctor can weigh in on any affect alcohol may or may not aggravate anything specific to you/your history.
My personal choice is to not drink at all during a treatment. I do not want to potentially tamp my immune system or work my liver At All during these times. I enjoy an occasional glass of wine, or lately a beer, when off treatment. Lately I am not enjoying my wine like I used to, so I will split a beer. There is a lot of argument around whether or not alcohol is "safe" when consumed at any level. I do think it's more a personal choice. The longest lived peoples have a modicum of wine/alcohol in their diet. But there are some people who genetically are predisposed to alcoholism and cannot ingest it without it becoming severely addictive. So I think it's more along the lines of "if it doesn't affect your ability to do daily activities, and doesn't contribute to poor lifestyle choices, it's probably not hurting you." As a natural fermentation product that's been around for millennia, IMO it's probably easier on our system than anxiolytics and other pharmaceuticals.
Thank you Sofia for your contribution to this subject. At the level I drink these days, I never feel compromised or run into any situations where I'm not thinking properly. I remember when the AMA came out with the recommendation that one drink per night for Females and two for Males was a good thing; in particular, I believe it had to do with decreasing the risk of strokes and heart attacks. When I worked in Hospital and Nursing Home Administration, I remember the Professional Journal reported in an article that it would be good for SNF to offer a glass of wine nightly to residents.
I Google things a good bit, so I tried with asking if alcohol was alright with CLL. It wasn't easy to find a direct answer, but I did read something about not taking it during treatment. I think I also saw something about its negative affect on the Bone Marrow. I can't believe however that one drink on Sunday's with my Son will hurt anything, nor will one to two nights with one or two shots.
I'm with you--used to drink as you did, and now just might but not always have a drink when someone visiting or when go out to dinner with a friend, etc. But most nights now I don't drink at all, which is a change from before diagnosis. I am inW&W. I do take supplements, like green tea, which can be stressful to the liver.
Are u on treatment?Definitely not during treatment. Every medication I take on warnings say no alcohol. Definitely effects.
During chemo I didn't drink at all. Hematologist said Definitely no. After that, it didn't taste the same for years. Once in awhile I will have a drink.
Fortunately I won't be a candidate for Chemo at my advanced age (I'm 76), but I guess it won't be good if I'm on treatment. I'm sure my Specialist will fill me in on that, if and when I ever start treatment.
In treatment? Depends on what your doctors tell you. Mine currently frown on it, and truth be told it does not appeal to me anyway for whatever reason.
I guess its a good thing that it never appealed to you. No matter how a person looks at it, alcohol is definitely not good for your body; however, for many (if not most people) it became a life style thing decades ago. It was a tremendous part of my socialization when we had lunches and dinners with members of the Board Of Directors in my Hospital days, in addition to so many parties with good friends. There were some bad times in my life, where i know I had a bit too much, but fortunately I got past those times and have been normal for over two decades. For me its an enjoyable think that I'd really hate to give up.
Oh, I drink plenty — but not while on experimental cancer treatments. I have lost my taste for it at present for any number of reasons but figure it will return soon enough.
I drank alcohol in moderation during the W&W period and in truth seemed to suffer no ill effects (that I’m aware of). Emotionally it was probably a stress reliever and that’s important to our well being. I was never advised to give up alcohol incidentally.
I drank very little during the 3 yr treatment period and usually only once a week socially. I monitored my liver and kidney function closely. They were more adversely affected by anti inflammatories which had to be stopped.
Now I’m in remission and in a position to drink more freely, I seem to have lost interest and unfortunately, my need for strong pain relief due to spinal stenosis means that the choice has been taken away from me.
However, it’s a special birthday this week so I might have a few to mark reaching an age I wasn’t expected to at diagnosis! 😉
You sound like my kind of person; you need to live life.
I learned something many years ago, perhaps thirty years, from a British medical study. It was a small news report on the internet that had a heading: "Drinking Large Amounts Of Coffee Prevents Alcohol Damage To The Liver". They said it was a five year study with over five thousand people, and said it was absolutely certain that the conclusion is correct. It said they didn't know yet why coffee did this, and they didn't know what a large amount meant, but it didn't mean a couple of cups a day. So I literally began to drink an entire pot each Morning and into the early afternoon every day. I then became medical proof of this with a story that is too long to put here (I'll share it with anyone who contacts me), but lets say it doesn't even leave one half of one percent doubt it is true.
In recent few years, maybe even this past year, I saw another news article on the internet. It said that a new medical study had confirmed a study from a couple decades ago, and said that drinking coffee prevents the deposit of fat on the liver. So for my friends here who like to have one or two each week, I'd down a good bit of coffee if you aren't currently doing that.
Female 14 Units and Male 21 Units per week. Not sure it has a bad effect in CLL cells - more than that amount alcohol related effects may emerge.
I stopped alcohol during FCR chemotherapy. After chemo I resumed 10 to 14U per week and something really weird happened. A small amount of alcohol mad my red blood cells go MACRO - like a B12 or Folate deficiency. I stopped alcohol and the size resumed normal range. I restarted and once more my MCV(Mean Cell Volume) went up above normal range. I repeated this a few times.
WHY this occurred I have never discovered, Does anyone have a clue for me? My Haematologist did not seem to know.
CLL cells unaffected!!
Alcohol - post chemo affects haemopoiesis!
"Chin chin"!!
Jig
PS 5yrs on I think the affect has worn off...! Perhaps I'll do another mini binge trial.
Does red cells going macro mean being larger or having many more of them. Whatever it is, wouldn't that be good for CLL, where we worry about too few red blood cells?
Its sort of like the Testosterone shots I get every two weeks. Many people have always said that taking Testosterone can be potentially harmful to normal people. I started taking it at age 60 because my levels were too low, as confirmed by an Endocrinologist. Then at age 70 I was diagnosed with CLL, and I wondered if continuing Testosterone could be a negative for me. To the contrary it actually is a benefit, due to the one thing that be harmful to normal people. The one potentially harmful thing with Testosterone therapy is that it can increase the number of red blood cells too much. Ironically with CLL we worry about red blood cells getting to few. I ran this by both my Endocrinologist and my CLL Specialist, and they both confirmed my thoughts; in fact, the Testosterone is actually helping me keep the RBC count from getting too low.
Since alcohol can affect absorption, metabolism, and excretion of various nutrients, by a number of mechanisms, I would hazard a guess that you personally get affected severly enough with even a small intake, that you see RBC dyscrasias. It's possible that you don't absorb the B12, folate, and other things with even a small amount of alcohol disrupting other cells.
I would suggest ramping it down. You didn’t list your platelet count. As you approach needing treatment, often the platelet count begins to decline. Alcohol interferes with platelet production.
Usually when someone asks if they’re drinking too much, my thought is that since they’re asking, the answer is probably yes.
It appears that your CLL is progressing. The swishing sounds in your abdomen may be related to the beginnings of acid reflux. This condition is sometimes aggravated or even caused by reduced space in the abdominal area due to enlarged lymph nodes and spleen. Drinking alcohol is not recommended when dealing with acid reflux.
I agree with the "usually if someones asks if they are drinking too much....." in a general population, but in this context, I think it's more along the lines of "what things may affect my disease, that I should avoid?" as opposed to alcohol use as a standalone question. Especially when friends and loved ones are asking "is it OK for you to drink at all, given you have a cancer?" coming up in conversation.
You hit it squarely on the head. My Wife has never been even a social drinker, and in the fourteen years (as of July) we're married I've had to struggle to get her to let me order a glass of wine to join me at dinner. Even then after a few sips she stops with the drink, and I have to finish her glass. She has gotten on me a lot recently, even with the small amounts (in my opinion) that I drink these days. She has hounded me that with my illness I am totally nuts to have any alcohol; thus, my question to the group.
I've had no fears or concern that I'm drinking too much; instead, I'm just wondering if I was rationalizing the small amounts I permit myself to drink. I did promise her I'd ask my Specialist through the patient portal, and i did put that question through last Saturday, but as of today I haven't had a reply.
Thank you for that input. I did report something about the swishing in my abdomen on this site, but it was a good while ago. Right around that time I went to my Gastro and he put me on Pantoprazole. What a great thing that was for me, in that the swishing stopped and I haven't had acid reflux since.
I did read something about alcohol and platelet production being reduced, and that did concern me, but my thinking was that minor moderate drinking likely wouldn't matter. To me that is the equivalent of one drink on Sunday's when I visit with my Son and his family, then one or two nights during the week having only one drink. I do admit that when I was drinking more than this, a good while ago, I did have acid reflux when sleeping on many nights.
I had acid reflux basically caused by the swollen lymph glands and my enlarged spleen. I could tell the cause after the fact - after I started treatment, the acid reflux disappeared within the first two weeks!
But, I did not tolerate the usual proton pump inhibitors so I had to find other means to avoid the acid reflux. That’s how I experienced the effect of alcohol on the acid reflux.
For me, I like to take the cookie monster approach of "it's a sometimes food". While I gave up soda cold turkey, I will still cook with alcohol 1/month or so, and have a drink 2-4 times/year when I go out with my friends for a double/triple date trivia night (1 drink per night - yeah, that's all I do).
But I was never a big drinker before diagnosis (unlike soda, where I did drink 1/day, so I gave that up cold turkey). While soda delivers nothing really to food, alcohol can deliver flavor and help texture, so I don't completely avoid it (I have an allergy free sweet potato, pumpkin, and black bean vegan chili that needs its white wine to be great).
That said, it delivers little nutritional value, so (for me), it's not something I would have "on the regular", but something I would and do have "to celebrate/socialize." But you've got me by decades, so I also have much more time I need to baby kidneys and liver to make sure they'll still work when I need them...
I've been into Vodka's for about ten years now, mainly because I learned that Vodka has 0 Carbs. I lost a bunch of weight on the Dr Atkins diet when I was younger, and I remembered that he said in his book the following: "if you want to keep weight off, then avoid alcohol; however, if you must drink after the weight loss then drink Vodka because it is zero carbs.
Once I got into them, for weight control of course, my two favorites became Ciroc and Chopin. Ciroc is incredibly unique, because it is made from grapes; whereas, all other Vodka is from grains or potato.
I had been a heavy drinker (scotch) for many years up to the time that my consultant started to discuss treatment. I was constantly relieved that bloods result always showed liver and kidney as normal.
I felt then that I should confess my excess alcohol intake to her in case of interaction with the treatment. "That's interesting" she said, "excess alcohol intake can cause the very thing that is prompting me to consider treatment" My platelets and red cell count were too low.
I immediately started to cut down on my scotch and although it did look as if it had some effect initially it wasn't enough. I started O&V treatment in December last year.
Anyway, having cut down for quite a while I have continued to only drink in moderation as it seems sensible for the sake of my general health. I now drink on average just less than 5 units a week, my consultant knows this and has indicated that she is very pleased with me. She also made a couple of comments about the fact that I smoked 2-3 cigarettes a day and I have now stopped that as well for the last 14 weeks (not that I am counting, you understand!) Not bad after smoking for about 60 years!!
Sounds like you are doing great, and have a great attitude. I hope you continue to improve, and that you have days ahead of you that you used to enjoy before this illness put some handcuffs on us.
By the way I notice some of you from the UK mention drinks in terms of units. Here we call them shots, and a shot is one ounce. Is your Unit the same as our Shot?
I was diagnosed with CLL in April 2014. At that time I had been a twenty a day smoker since the age of about 16 yo. I gave up completely, when they informed me of my diagnosis.I was so terrified of leukemia, that giving up smoking was very easy. I can't even stand the smell of tobacco.
Hi Wizzard - In W&W, year 4, n I asked my CLL doc that very question early on about alcohol Cus I’ll be honest I simply enjoy a good beer (sometimes two) with dinner about every nite. He said that moderation is ok n then he said sub in red wine sometimes, it’s fine!
That made me smile. 🙂
Here’s what I did to reduce ”alcohol” content instead of an IPA beer (love em)… I subd in a Corona Lite n cut my alcohol % in half (8% to 4%). I can feel that difference. One Corona beer becomes 1/2 beer n 2 becomes 1. Self beer cutdown, wasn’t told too… but just did it.
So now I’m like that commercial enjoying a Corona with my meal, not on a beach, but looking out at the Rocky Mts from our cedar deck I just built (n nearly burned our house down in the process!)… n enjoying the moment Wizzard.
Advice number one from folks here on this forum per my second post (“Dx with CLL, How long do I have to live?”)… Was…. Live and enjoy life.
Moderation is always the key thing about drinking.
Of course if your on treatment or for other reasons n your doc says no alcohol… then that’s a different scenario. Follow docs advice! 😀
Just an opinion and a note about not so much on “number of drinks” it’s about how much alcohol your consuming … within those drinks.
Love that Rocky Mountain High. I agree with the drinks versus amount of alcohol. Basically earlier in my post I was referring I think to drinks as opposed to Shots, and was insinuating that a drink was a shot. Guess I'm fibbing a bit, and sometimes my drink is a bit more than a shot. Of course I haven't defined bit.
I have a Brother up in the Rocky Mountains. He lives in a place called Eagle, which is adjacent to Vail. Really beautiful up there.
I too believe in enjoying life and getting the most out of whatever we have left. That's why I kept traveling with my Wife during Covid, including international trips and staying in hotels and dining in restaurants. I took the vaccines, and learned where I could get the monoclonal infusions, and hoped for the best. Somehow I survived all of that, and I'm better for it.
I know your goal is to make it to the 9th inning n be “the Closer” Carl …. Hope that happens for you n that you get a good healthy slice of life along the way! Take care n good luck on your journey.
Funny you mention being the Closer, because I said something similar to my youngest Son Andrew. He's the one who had three open hearts by the time he was age 12. He's still around today at age 40, so you know he's tough as nails. I told him recently that I hope to stay in the game all the way until the end of the ninth inning (age 100); however, I said if I have to leave before the last out in the Ninth I'm designating him as my Closer. If I can't make it I said, then you have to finish for me.
Hope you are there cheering with me at that end Pin.
I'm partial to an IPA (India Pale Ale). Especially brewed for the British troops out in India, in the first world war. Standard British beer, was too heavy (and too warm?😁) for the tropics.
Now that I am off of Venetoclax, I will have a glass or two every so often. When I told my onc PA that I was moving to a county known for a plethora of wineries, he asked me if I like to visit different ones, which sure sounded like he wasn’t opposed to the idea. For me, it’s everything in moderation.
Go for it —but in moderation. I’m still learning how to deal with alcohol and CLL but, since diagnosis in 2001, I’ve had 1 or 2 glasses of wine with dinner 6 nights a week usually with the occasional blowout (3 or 4 glasses) for a big occasion — like turning 75 last year!
Thats really my style THB. 75 was the first birthday that really affected me, not 50, 60, 0r 65, it was 75. I'm sure it is because of all the Football and Basketball I've watched over the years. When the Third Quarter ends, and your still slightly ahead in the game, you start to get anxious into the Fourth Quarter. So when 75 arrived, and I've always sort of thought my goal was 100, I realized I'd finished the third quarter and now was in the fourth quarter. Hit me hard realizing the game was almost over; but, at least I'm not yet at the 2 Minute Warning.
I abstain a night or two during the week, and have had no adverse affects. Been on Imbruvica for the past 4+ years. The thing I do try to be pretty religious about is drinking the 64oz of water every day. Not being able to raise a glass or two would be detrimental to my well being.
I agree 007 that still looking forward to that glass or two is a big deal now. I'm also learning that I need to drink a lot more water. I get way too dehydrated frequently, so I've finally started to hit the water bottles much more during each day and evening.
personally I gave up alcohol, not totally as I still enjoy the odd cold beer. I no longer sit at the bar to 5am…However my consultant told me to do the things that make me happy. Everything is enjoyed in moderation.
We’re all going to die, regardless of any medical conditions we live with.. that is going to be the end result, guaranteed,
You can preserve yourself as long as possible to die anyway. Or you can live the way that best supports enjoyment for you and your challenges and still get there.
Hey Misty I know you're from Great Britain, and might not be familiar with the song It's Five O'Clock Somewhere. If you are great; if you never heard it I think you'd love it. It was by Jimmy Buffet in a duet with a great Country Western Singer Alan Jackson, and the video is here youtube.com/watch?v=BPCjC54...
I did see a video of that song. He was in a speedboat playing a guitar. If I was going to listen American country-rock music, it would probably be Johnny Winter, Lynyrd Skynyrd, Molly Hatchet, Bellamy Brothers, Bonnie Raitt or Glen Campbell.
I realize to a person from UK Country Western isn't a big interest; however, if you want to hear a singer who in my opinion was one of the greatest of all time (of any Genre) listen to some George Strait.
At 77, I'm on Acalabrutinib and its partners in crime Cotrimoxazole Aciclovir and Allopurinol. There are no instructions to cease alcohol. But what I have noticed is that if I have anything more than a mere modicum (wine or beer) I feel fine at the time but generally bleah several hours later. For example, I had two (small, and I mean small) glasses of red wine at 7pm last night, at 11pm I wished I'd hadn't, this morning all OK. As a member of Camra, this really pains me, especially as I have a stash of Old Jock bought at the brewery last month plus several bottles of really good single malts sitting in the larder lounging around not fulfilling their life's ambition.
I'm wondering if it's the Allpurinol that's the culprit, so I'm going to cut from 200mg to 100mg if my consultant agrees, and see what happens. Experimentation by drinking more - now that's what I call all-good.
So my non-medical advice is (a) read the instructions of the medications and don't bother listening to me (b) if you start feeling rough hours after a tipple, reduce the tipple to a tipple-ette to achieve a balance so you don't feel rough.
Unfortunately, the most recent consensus among researchers is that any amount of drink is detrimental to anyone’s health. One should not be surprised to develop alcohol related health problems when imbibing regularly above your body’s tolerance threshold, and this threshold lowers with age. I told my hematologist about my drinking beer every night for many decades, and he had no issue with me continuing ( he’s German). However, other doctors have implored me to stop for health reasons, especially since I’ve gravitated toward much stronger Belgian beers in recent years. A single daily 330ml beer @8.5% ethanol is pushing the moderate drinking limit, and 2 or 3 in a long evening is clearly heavy drinking. I’m rethinking my bad habit and recently stopped completely for a month (and then promptly caught Covid!). Now that I’ve largely recovered …I’m considering starting back up with lower alcohol beer ( knowing full well that no amount is completely harmless.)
Yes I've just read the article in Apple News that suggests all the medical opinions over the last six decades about a little alcohol being good for you was wrong.
To heck with their new research, I'll still believe the dozens of articles by top authorities like the American Medical Association. The earlier studies referred to a J shaped curve that showed a little alcohol for men and women was good to reduce strokes and heart attacks, but only a little. So the dangers to heart and of stroke go down to the bottom of the J shape and then the risks go up to the top of the J as you drink more alcohol. Now supposedly new researchers say it was all false. The true facts are that there is a little benefit and they cannot deny it, and the J shape is still there, but only a limited amount of alcohol gives that little push in the right direction.
"Most studies of alcohol consumption show that no amount of alcohol is “safe” or beneficial. Whatever you decide about your own consumption of alcohol, do not base your decision on bad information from the alcoholic beverage industry. Occasional drinking probably will not harm you, but repeated drinking increases your risk for many different cancers, heart attacks and strokes. " Source: drmirkin.com/nutrition/no-a...
I just referred to the new research in the last reply I made to Tortola. I'm sure there has been shown to be a little more risk of cancer with any amount of alcohol. I believe the research showed a 4% increase with different types of cancers. When you read the article carefully however, they are forced to admit that there still is a bit of the J Shape for limiting heart attacks and strokes with limited alcohol. So is I'm alright with the cancers 96 out of 100 times, and a small amount of alcohol daily reduces somewhat the risk of heart and stroke, and I enjoy my life more, then I'll still be lifting the glass occaisionally.
My sister preceded me in treatment by 7 years. She avoided drinking alcohol and only had a glass of wine from time to time. When I started therapy, I just followed her lead. It wasn't fun at all. Prior to therapy, I had 1-2 glasses of wine (RED) a day. Going cold turkey was just part of the deal, or so I thought.
In March, I asked my CLL specialist if drinking was a no-no. He laughed and said I can drink whatever I want - wine, beer, or the brown stuff. It was his way of telling me alcohol is OK. But, as DRM18 said, 'everything in moderation' is a must.
Today, I DO NOT drink every night. However, when my wife and I go out with friends to celebrate life, I will drink 1 or 2 glasses of wine. I feel fine and my numbers are good AND remain stable.
And keep doing so my friend. Going to a school today is dangerous to your life too, but I doubt we will be closing the schools en mass. There should be a mix between safety and living life, and whatever time I have left I plan to live it.
Excessive alcohol use can damage your liver and other vital
organs, including your bone marrow, and limit your future
treatment options for CLL. Even moderate alcohol intake
can have a suppressive effect on bone marrow function."
This information is important to know so that you can make the best choice for yourself. My oncologist said that an occasional drink would be fine. I am now on a cancer inhibitor-Acalbrutinib and I am focused on staying as healthy as I can. I have probably had 3 drinks in a year. This works for me.
I saw in my google search of alcohol and CLL the reference to all the things you mentioned, and it did depress me a bit for a while. If my CLL Specialist told me I had to stop cold turkey from all alcohol when i go on treatment ultimately, then I guess I would do so; otherwise, I'll still enjoy one or two a week.
in general a women processes 1 drink a day and a man 2 drinks. More than that is supposed to tax your liver. When I asked my doctor what I could do to better support myself, she said I could follow an alkaline diet. When you google it, one website says you can have a glass of wine (hard liquor is more acidic) and another website says only drink alcohol if you want to die. I would ask your doctor. I think anything in moderation is ok
Hey Wizzard I'm on Ibrutinib, Famciclovir, Eliquis, Losartan and several supplements and normally have a few beers and a bourbon each evening (maybe a few more on the weekends, wink-wink). I've been following this regime for almost a year with no problems. My WBC and RBC have recently come back into normal ranges and I feel fine. Like you, I enjoy my drinks and didn't want to give them up. At some point I think you just have to say, what's the point if I have to give up everything in life I enjoy. Just my 2 cents.
I've been on ibrutinib for 4 years and have always had a couple of glasses or red wine (I switched to red as it is supposed to be healthy) or a couple of beer most days. The only effect so far is to make me feel better!!
I normally don't drink much at all but now on the CLL meds, I hardly even drink but if I were to have a glass of wine or a mixed drink, I would never do it at the same time I take my pills. I have a real fear of interaction. It really bothers me that I can't eat grapefruit or have ruby red grapefruit juice or any drinks that contain grapefruit.
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