I am new to this board since I was diagnosed just this month with CLL. I've always been very healthy and fitness oriented, and am only 53 years old so this has been quite a shock for me.
I've just received my FISH test result which came back "normal" with no genetic abnormalities. I am also ighv negative (unmutated) and am ZAP-70 negative and only 2% in CD38. Doctor says I am stage 0 asymptotic right now with last ALC level at 5.6 and a normal WBC so am in Watch and Wait.
There is so much varying information out on the web about this disease and prognosis determination that it is overwhelming. From what I can tell, this board has a wealth of helpful information and support. If anyone has any additional insight or source information into what all the above stats mean in terms of prognosis that would be great. Dr. just tells me he is hopeful it will be many years before any treatment is needed.
Also, since learning about the diagnosis, I've started juicing, cut out all alcohol (hard form a wine lover ) and have switched to a mostly whole organic plant-based diet. Not sure if this is going overboard but at least this has been my initial response. Does anyone have any thoughts or experiences they can share about having a few glasses of wine a week. Also, having cut out all meat, I am a little worried about B-12 as my counts were a little on the low side before I changed to this diet. If anyone has suggestions that it would be great.
Thanks so much for your help and support and God bless.
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Ladynred00
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I have used a glass of wine or a bowl of Haagen-Dazs as a reward... doubt it has impacted my CLL, in fact the resveratrol in some red wines may have a small benefit, in CLL.
You should discuss your B12 levels, and perhaps your intrinsic factor... you may need sublinguals, but injections may be a better route. Plant based diets can cause B12 issues.
You should clarify your IGHV negative... you say unmutated, but both the Zap70 and CD38 markers say mutated...
Its a long road, you many get better benefits from excercise than diet changes, reduce stress and enjoy the little things...
This site is a great place to start! Many here have been managing for years and years. Treatment options are making huge advancement. You are stage 0, so probably won't need treatment for a long time, and some never need it. The pinned posts here have great Information and links to other sites.
I've been on watch & weight 😊, for 9 years, diagnosed same age as you (yip I'm 62).
Great forum for information. Suggest you read the pinned message "THINGS WE CAN DO to improve our CLL journey (an update of "Coping Strategies")" PaulaS
Paula's Volunteer
Sorry not learned how to do links!
A lot of the frightening statistics are from people in active treatment who (shall we say) very mature adults😇) & remember most who post have had treatment. Read the posts, but keep perspective.
Just a note. My hubby, age 71, 17p deleted MP53 (?) the bad guys. He is doing very well on WnW. Did cut down on wine because it raises his glucose level but still has it several times a week. Beer seems better for him. Golf’s twice a week, works full time. Eats healthy but not a vegan. Hope you will do as well as he.
Sorry you are in this position. I'm about the same age. I went nuts after diagnosis and got to a normal weight and cut out alcohol but in my case, I have an aggressive disease and I progressed quickly anyway. Diet choices are personal, but for what it's worth, my doc is one of the best in the world, Dr. Byrd, and he has give me a pastry during my appointment once and when I asked specifically about liquor, he said no more than two glasses a day of wine ever. I did start drinking again. I'm post treatment and doing well, but I do need to tackle the weight. I am very active - I'm a figure skater, albeit a chunky one right now!
I have been quite fortunate in that, although the first CLL indication was 11 years ago at the age of 47, I am still on watch and wait.
I wanted to comment on your nutrition choices. Personally, I have tried a few things over the years. No meat, no alcohol etc and I have to say that the blood tests every two or three months have not responded to my efforts to influence them!
I have googled plenty but don't claim any qualifications in nutrition.
You comment on juicing, which I guess is convenient if you don't like fruit and veg, and you do still get the benefits of the nutrients in the juice. However, you miss out on the fiber which supports digestion, helps you to feel full longer, and prevents blood sugar spikes. Additionally, to make one satisfying glass of fruit juice requires several of the fruit.....and a lot more sugar.
Giving up meat is fine if being vegan or vegetarian is your choice but you do need to be very careful that you are not missing out on important nutrients. Maybe restrict processed meats and limit red meat while eating more fish / chicken.
As for alcohol, I have tried abstinence, drinking daily, and also the recently promoted 5 days without & 2 days in moderation. Again, no affect on the blood test results. While the jury seems to be permanently out on how much is safe to drink, too much alcohol is not good for anyone. Giving up for a month or so is a lot harder than committing to five days a week and that also gives you 260 alcohol free days a year. I get to enjoy the odd whiskey at weekends and hopefully both the doctors and my liver are happy.
Supplements such as turmeric or green tea have had no noticable effect and could place an additional load on the liver / kidneys.
Exercise, looking after my weight and a balanced diet, have helped me the most. I walk 6 - 8 miles a day with the dog, cycle 120 + miles a week, and do some weight training. I generally feel much better for it. Fatigue is still an issue at times but I feel I have earned it.
As for the mind, whilst waiting for blood test results does still raise concerns, I spend very little time thinking about CLL. It may be an issue in the future but today I'm fine.
I ran across this article about wine recently. I don't happen to be into alcoholic beverages, but I've noticed doctors often ask in a consultation whether we drink or smoke. Hmmm.
That very large study showing that there is no safe level of alcohol consumption seems to be the eventual conclusion of many, many studies, perhaps with most trying to justify the general appreciation of alcohol with maybe a slightly biased view of the data through a beer glass (or more). A few years ago now, an Australian study identified that studies of the comparative health of drinkers and non-drinkers showing drinking provided a health advantage were flawed, because the non-drinking control groups included people who didn't drink because they had pre-existing health conditions - which is why they didn't drink!
As in all things in medicine (and life), it's a risk vs reward question.
Welcome Lady i love rose wine and was drinking 2 glasses a day 3 times a week Dx 5 years ago age 48 SLL. surprised how my WBC finally went up to 3.9 at 4 it’s normal .. I believe stress and lack of sleep is the worse thing for immune comprised people.
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) and have switched to a mostly whole organic plant-based diet. Not sure if this is going overboard but at least this has been my initial response. Does anyone have any thoughts or experiences they can share about having a few glasses of wine a week. Also, having cut out all meat, I am a little worried about B-12 as my counts were a little on the low side before I changed to this diet. If anyone has suggestions that it would be great.
i love rose wine and was drinking 2 glasses a day 3 times a week Dx 5 years ago age 48 SLL. surprised how my WBC finally went up to 3.9 at 4 it’s normal .. I believe stress and lack of sleep is the worse thing for immune comprised people. 
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