Just wondering what the general consensus amongst members of the Cml “club “is on consumption of alcohol, purely in a moderate way, what with holidays, and social events that happen in the forthcoming summer months, not looking for the green light to binge drink more the effects alcohol has on medication, in my case Nilotinib. Peter
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Alcohol and Cml
Let me count the ways ....
Beer - on tap, keg or micro brew. All good. (my favorite: Spaten)
wine - cabernet - drink the good stuff (minimal to zero sugar). All good. French/California depends on mood.
Scotch - single malt or blends - preferably Johnnie Walker, Glenmorangie, Balvenie, Glenlivet, and -wait for it - Macallan 25 year -- wow.
Gin - English? Dutch? hmmm tough choice.
Vodka - Texas tea: Tito's - try it, it's better than what the Russians make (to my huge surprise).
Personally - I wash down my sprycel with a glass of wine sometimes scotch. Been doing this for years and years.
This is called: "LIVING" with CML.
Hi scuba, thanks for your reply, love your attitude to this subject, since my diagnosis, January 2015, from loving a glass or two on a Saturday evening after a hard working week on nights, I seem to be put off from this habit because of worrying it may effect the “power “of the medication, I will have a glass of Chardonnay this Saturday and the toast will be to you. Cheers
This is a subject dear to my heart in respect of my love of very good wines;in addition my haematologst is a wine enthusiast so we talk about the subject as well as the essential stuff on PCR s and TKI s.I am on healthcare insurance in UK with a wonderful provider.
I did read that if one has CML and is on a tki then it is advisable to be "moderate" in terms of consumption of alcohol but I can find nothing in the literature about any interaction between tkis and alcohol whereas one would always be reminded if taking some antibiotics to not take alcohol during the course of treatment.TKIs hammer the liver and so does alcohol but if on the other hand I had to take alongside tki s high dose paracetomol/acetamenophin/tylenol as NSAIDS as painkillers then I might be concerned for my liver.
In the last two months in the interest of avoiding inflammatory foods (lots of dreadful musculo-skeletal side effects from imatinib) of which alcohol is one of them I have gone on to alcohol free drinks or especially 0.5% wine-the alcohol free gin is expensive and tastes little of the botanicals that are supposed to be enriching it and some of the wine is dreadful.My specialist did say that he intersperses alcohol free with alcohol drinks and that basically it was just a habit to sit down after work to have a few drinks-doctors are only human!
Re Nilotinib and alcohol Professor Jane Apperley of Hammersmith did say in a blog that I saw that if you are a drinker (or you have a heart problem) then it might be inconvenient because of the fasting necessities before dosing and so on.
In the broad order of things thanks to Brian Druker and all the other researchers alongside and with him plus Novartis to produce a brilliant response to CML we as patients might not be at a disadvantage if we try to enjoy ourselves with a wine etc of our choice.
So in conclusion we as blood cancer patients might be advised to be moderate with alcohol and also reconsider diet and engage in exercise and then enjoy our lives given to us as a result of drug development/medical research.
John your information is always spot on, and I respect the time and effort you have put in to gain this knowledge, I had been in a “cocoon “ until I discovered Cml support group, and again John many thanks for your reply. Peter
First off...I do not drink because I do not metabolize alcohol. A toast of wine and I feel like a fog moving through my body and I am asleep within 15 minutes for about 3 hours. My catholic friends LOVE me! Serious. My ALT was always in the 50's not alarming. 33 is the top range. I started taking two 175MG milk thistle each morning close to my bosutinib. My number after that was 17. I was telling everyone I was going to try to start enjoying a drink now and then (I retired have time now) because when I would be out they all were so relaxed and chilling...I wanted that feeling. Unfortunately I was diagnosed with CML shortly after retirement.
Your post about milk thistle and ALT levels caught my attention. I was on 100mg Bosutinib (low dose due to low platelet count) but my ALT levels were rising while my BCR-ABL was also rising. Started to gradually increase Bosutinib while also taking steroids to help my liver.
I am currently taking 400mg Bosutinib and also gradually reducing the steroids now that my liver numbers are back to normal. Having read your post I am now wondering if I should try milk thistle when I have stopped the steroids?
What dosage of Bosutinib are you taking Stephanie if you don’t mind me asking?
I used to drink heavy dark beers and alcohol. Now I've changed to Alcohol Seltzer Water . It's 5% alcohol and it's water and only 100 calories . I can give up alot of things because of this CML but I still need to enjoy myself and relax .
I used to be a bodybuilder and Milk Thistle is good but Glutathione is the best for cancer patients . Here is a link to description https://www.webmd.com/vitamins-and-supplements/glutathione-uses-risks
You could even use both if you wanted to . You can take them all year around to protect your liver and kidneys .
I have a glass of wine or a beer, and maybe a second one, once a week, maybe. I do have a glass at parties, maybe 2. I spent almost all of last October in Europe - France, Spain, and Italy - and drank every night with our meal and with friends. My liver has held up, but quite frankly some beer and some wines do not agree with me now. My onc says a "restaurant pour" glass of wine is OK.
Rejected sprycel so I was "eased" into bosutinib at 100 mg 2 weeks, 200mg 2 weeks then 300mg and in just a few weeks I had responded so quickly they did no raise me to 400mg. So I am at 300mg each day and i was at 0.0595 in no time. I credit the milk thistle. ALT was always a bit high and the only thing I added between the tests was the milk thistle. Will have more data in May when I am checked to see if I am at MR4 then blood work each 6 months. I always asked my doctor before adding any supplements.
Oh...cranberry juice does lower platelet counts. I stopped drinking it even though I learned to enjoy it mixed with a fresh lemon. Incorporate foods that raise your platelets also. I snack on raw spinach. but there are fruits that help also.
Thanks Steff, I have been gradually increased to 400mg Bosutinib and this brought my bcr-abl down from 20% to 9.1%. Had another test done last week to see what it is now, will find out at my next appointment in a couple of weeks, fingers crosssed.
I will ask about taking milk thistle when I am off the steroids at my next appointment.
Good luck with your bloods in May.
But drinking scotch and red wine (not together) never stopped - even after diagnosis. I always had a glass or two most days except during Lent. As long as your liver is healthy, having a glass or two per day is fine. My liver biomarkers were always excellent.
In fact, ANY amount of alcohol is bad for you. I was reading this over a glass of scotch:
Other research I came across pretty much said the same thing that any amount of drinking is harmful regardless of the amount and does damage to the body (especially liver). Alcohol is a poison and toxic to the body. (https://drlwilson.com/ARTICLES/ALDEHYDES.htm).
I continued to read about this over wine out of my interest in health and what to do to improve it as we age. I came to the conclusion that life without wine is not living to our fullest. But I do abstain from all alcohol during Lent to give my liver a reset and start enjoying wine (and scotch) all over again when Lent ends. It works for me.
If you do not drink alcohol, best to never start. If you do drink alcohol - cheers and look forward to catching up in a pub!
I was taking milk thistle prior to my diagnosis, but was told to stop. That was in the early days, when they had me on multiple drugs.
Is there a resource for checking supplements against Sprycel? I get a different answer every time I talk to the Accredo pharmacist. More often than not they will say there is no data, so avoid it.
Additionally, I am a tea drinker (NOT green), chai tea, rooibis-my favorite, red raspberry leaf, hibiscus, dandelion root, honeybush, etc. Anyone have info on teas??