Alcohol and wine

[Jessielab]

Can you share with me your experiences, recommendations, and how much and how often?

I have particularly enjoyed wine and its culture. I would hate to give up this one passion.

Your thoughts?

Jessielab

[Ellieoak]

I don’t think a glass with dinner shouldn’t be a problem. But not much more. For my birthday I had 2 martinis and had trouble walking.

[cajunjeff]

Hello Jessie. I asked my cll doctor if it was okay for me to continue to drink wine after my cll diagnosis and he said it was mandatory that I do. I have followed his advice religiously ever since.

The one change I have made since my diagnosis is that I now drink better wine than I used to, why the hell not? I even converted my home office into an office/wine cellar. A friend with another type of cancer once told me cancer taught him not to buy green bananas and to eat my dessert first. Sound advice I think, even though I have no plans to check out soon

I read somewhere that a glass or two of wine a day is not bad for your health. I try to keep it to that but for special occasions. I confess that my definition of “special occasion” can be a bit liberal at times.

Its probably a good idea to discuss this with our doctors, particularly if on any cll meds. I have been on acalabrutinib for a few years now and my doc said I could drink while taking it.

[DRM18 in reply to cajunjeff]

Lol!

[Living_and_Learning in reply to cajunjeff]

😆

[thb4747]

I’m with Cajunjeff. Life’s too short to make yourself miserable. A glass or 2 of wine with a meal should be fine. I’ve had CLL for 22 years and rarely had a night without a glass. 🍷 Enjoy!

[Jessielab in reply to thb4747]

Gosh... I love the 22 years part of your post. Have you had any treatment?

[thb4747 in reply to Jessielab]

Sure have! Multiple treatments over the years both for CLL (FCR multiple times) and AIHA (autoimmune haemolytic anemia). I’ve been taking Venetoclax for 6 1/2 years and have been having IVIG infusions (intravenous immunoglobulins) every 4 weeks for the past 10 years. Currently feeling great and off to Japan in 6 weeks.

[HopeME in reply to thb4747]

And the occasional Cuban Cigar!

[thb4747 in reply to HopeME]

Not for me. I gave up smoking when I was 8! Never finished the first one in fact. A little scotch or brandy snifter maybe.

[HopeME in reply to thb4747]

You’re a better man than me. Nothing like golf or fly fishing while puffing on a Montecristo #2. I admit I have my vices 😀. I try and offset them with lots of exercise and strength training. Everything in moderation.

[SLLJOHN]

I have been on Ibrutinib and Alcalabrutinib for 6 years and have drunk wine most days!

[Jessielab in reply to SLLJOHN]

Oh my... You make my palette sing!

[thompsonellen2]

I am Dr. Byrd's patient and his advice is it's ok to imbibe, but never more than two drinks a day (which is higher than recently revised US guidelines). He likes wine, too. 8 years into this and starting my third clinical trial tomorrow (more on that in the near future), my numbers suggest my liver is still intact. And like cajunjeff, I am drinking better wine. Life really is too short.

[Jessielab in reply to thompsonellen2]

Oh yes, at 69 years, I am very picky about what goes in my mouth. Thank you for that upbeat post!

[Paulhonda]

I have a beer and glass of wine every night. Kept me on W&W for 23 years. Nearly finished O&V without too many problems. At age 70 I am probably fitter now than I was 30 years ago😀.

[Jessielab in reply to Paulhonda]

I am 69 and very fit. More than I was 30 years ago as well. In the end we die anyway.

[FairweatherSailor]

I agree with the comments above. I think decisions about alcohol don’t really have anything to do with our CLL , just about alcohol generally. Personally I enjoy a glass of wine or two with a meal and the occasional scotch but I try to have at least 2 or 3 days a week alcohol free. Personal choice I feel.

[Jessielab in reply to FairweatherSailor]

Great reply! I am beginning to feel less timid about enjoying one of my passions. Thank you.

[Muddywater]

I’m not a big wine drinker but I do enjoy a wee gin and tonic in the evening. Every couple of weeks I will have a few beers with friends. As a wise man once said ‘everything in moderation’ .

[Katie-LMHC-Artist]

My take on this is any thing in moderation. We need to keep our immune systems strong! I have an occasional glass of sulfate free organic wine on special occasions. I want to keep my liver and kidneys healthy. I also understand quality of life. People need to make decisions that work for them. 😎

[Jessielab in reply to Katie-LMHC-Artist]

Very well taken. Thank you.

[lankisterguy Volunteer]

Hi Jessielab,

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I see you joined us last October, and your profile mentions CLL+HIV, so we assume you were diagnosed but not in treatment.

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Your doctor likely has you on a 3 month schedule for blood tests and those include liver function tests (The most common blood tests include: Liver enzymes test. Your liver enzymes include alkaline phosphatase (ALP), alanine transaminase (ALT), aspartate aminotransferase (AST) and gamma-glutamyl transferase (GGT). If those enzyme blood tests continue to show normal values, most CLL experts would advise that moderate alcohol consumption is OK.

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If you start treatment for CLL, some of the targeted treatments place more stress on your liver, then paying attention to those tests is even more important. And of course with either of your diagnoses, infections are a serious risk, so we all should keep our bodies in the most healthy condition to survive the inevitable infections (weight control, moderate exercise, adequate sleep and hydration).

-

Len

[Jessielab in reply to lankisterguy]

Thank you very much for your response.

You are correct, I am not in treatment and am

in great physical condition.

I have been a wine lover and lover of the whole experience of tastings, pairings and collecting wine for some years already.

My liver and my other organs and glands are all normal for which I am endlessly grateful.

Hope you are well. Patrick

[Big_Dee]

Hello Jessielab

I was told by my CLL Specialist that alcohol in moderation was ok. When I started V&O CLL treatment, was told no alcohol. Now that I have finished V&O CLL treatment, back to glass of wine 2-3 times a week. In any case I would suggest you ask your CLL doctor. Blessings.

[Jessielab in reply to Big_Dee]

She said in reluctant terms that moderation with wine was ok. Hard alcohol was a hard no! Fortunately I am not a martini drinker anymore. Hahaha!

[Smakwater]

Jessielab,

If you are in treatment, consider well anything you consume that will affect the metabolic process of the drugs and how your body responds. There are even cautions about consuming what would normally be considered good. E.g, grapefruit which is a cy3A inhibitor and influences the rate of drug absorption.

As you know, talking to your doctor who is your choice of a trained medical professional and the one most familiar with your overall health in addition to listening to your body is the first measure. There is also the metric of how much over what time and with what else.

Aside from the medical lecture, and generally speaking, who would argue or deny that few ounces of one's favorite swirling notes of black cherry, pomegranate, plum, raspberry, and raisin, hints of coffee, leather, tobacco, molasses, and black pepper could possibly be harmful when possessed with a perfected gratitude

JM

[Jessielab in reply to Smakwater]

Your response is delightful! You must be a lover of good wine.

[Feelsolow]

I go out every Friday night with the lads and have often more than my fair share of beer !

[Jessielab in reply to Feelsolow]

And??? All's well?

[scryer99]

My care team is not enthusiastic but did not prohibit. My spouse is about the same.

I have found that both my tolerance and my interest have been somewhat reduced. But it's fine and I have not stopped entirely. Generally stick to 1 or 2 drinks' worth though a few times a week.

Muscle/joint aches have been a regular side effect for me on my treatment regimen. They have seemed to be somewhat worse on days after I imbibe, but that may be anecdotal.

[Jessielab in reply to scryer99]

I consume the equivalent of one bottle per week over several evenings a week. Nothing negative to report.

[MisfitK]

It's another one of those cost/benefit decisions that will affect each of us differently.

How susceptible are you to inflammation already? How susceptible are you to possible chronic effects from alcohol use? How well does your liver function? How well do your kidneys function? Are you in active treatment? Have you previously been treated? Do you have any other health issues other than CLL? How much do you like alcohol? What types of alcohol do you like? How much and how often do you drink alcohol? Etc, etc, etc...

So, no one and no one's doc will have the "right" answer for this one. For some people, with the same CLL factors, alcohol has almost no lasting effect on the body. For others, it may exacerbate a chronic inflammation issue.

So, how does it make you feel when you drink it - both good and bad. That will be your answer.

As for me, I gave up my sporadic drinking at diagnosis and have now dropped to 1-2 drinks a year (maybe) for "raw" alcohol drinking. That said, I do cook with alcohol, and only keep the highest end stuff for that. I do that about 1-2 times/month (red wine sauce for steak/lamb is my most frequent use). Why high end? As someone said, if I'm gonna use it and since I drink so little, I dang well am gonna get absolute enjoyment out of it.

[Jessielab in reply to MisfitK]

Thank you very much for your response. I drink only wine and not that often. A few times a week while cooking or at the table.

I am HIV+, undetectable and have not been treated for CLL by my oncologist. I see her every 4 months.

I am fairly new to this, (diagnosed in 2020) and trying to understand what I can send can't do to stay healthy.

I do take cannabis edibles for anxiety.

Hope you are well.

[Katie-LMHC-Artist in reply to Jessielab]

My heart goes out to you for managing both illnesses. I was diagnosed in 2010 with CLL. The same year I dated someone for 9 months and we decided to go our separate ways. We didn’t see a future in staying in the relationship. The night before my lymph node biopsy he called to tell me he had tested positive for HIV. I thought an asteroid had hit my head. I wasn’t sure if I’d be able to survive both. I kept having blood work and getting tested for it. I’m grateful that I was negative. The worry and stress were difficult! I’ve been in treatment now for 13 months for my CLL. I’m on Acalabrutinib. Again, my heart goes out to you for managing both. Stay strong! Take care!🦋

[Katie-LMHC-Artist in reply to MisfitK]

I think I’ve had 5 drinks the past 3 years. I come from a big family that like their wine and craft beer. I try to stay mindful of my health. These days I drink more water, tea , and coffee. I lost a sister to alcoholism in 2020 and it was painful. During the course of my career I’ve worked with a lot of addicts. That may be another reason for my lack of desire to drink. When I do have a glass of wine I buy sulfate free organic wine. I’m lucky to have a place in my area that sells organic wine! 🍷

[Cgolen99]

I have some wine most weekends, GOOD wine! 😚 I avoid the Greyhound cocktail! (vodka/grapefruit juice) 😉😂 . My doc said that is fine! Been on Ibrutinib since 2018 and doing well...

[mdsp7]

I regularly drink a glass of red wine. I was given a poor prognosis 16 years ago and am still watch and wait. I read somewhere that pinot noir is most effective at fighting cancer (it contains resveratrol), so I try to limit myself to a glass or less a day and I don't drink it every single day. I give my liver a day off a few times a week. Best wishes! A votre sante!