I was diagnosed with Cll 3 months ago but my GP doctor suspected it a year ago. I am on W&W.
I am wondering if I need to be on any kind of special diet and what supplements to take or not to take? The hematologist asked for a list of prescriptions and supplements I take but did not comment on them. I find this to be true with just about every doctor I have seen. I'm confused...
There have been many discussions and debates on here about nutrition and cll. As you might expect, lots of people swear by certain diets and supplements.
I think it is fair to say that the majority of top cll doctors treating us do not suggest fad diets or supplements, but rather that we eat a healthy diet in moderation and exercise regularly.
Opinions can vary over what a healthy diet might be, but it usually means a diet rich in fresh fruits and vegetables and a diet that avoids processed foods and foods with added sugar. Most nutritionists at major cancer centers do not advocate diets that eliminate entire food groups like meat or carbohydrates, but rather emphasize balance and moderation.
I asked my doctor at md anderson again last week if there were any supplements he recommends for me. His consistent answer has been that I do not need supplements and that all vitamins and minerals I need can be found in a healthy diet.
sugar03,
There are as many opinions on diet as there are people. Some desire to continue to enjoy their lifestyles with as little change as possible while others (like myself) make changes to hopefully improve our outcomes.
I don't believe there is enough CLL diet specific information confirmed by clinical studies for anyone to say a "special diet" is required.
From my reading a "whole food plant based diet" has been shown healthy for most people.
I also take supplements and some off label medications (Care Oncology Protocol).
Blessings,
Hal
Hal, I agree that whole food plant based (wfpb) diets are mostly considered healthy, however, I find wfpb means different things to different people.
Some people equate an wfpb diet with a vegetarian diet. Others see wfpb diets as diets that emphasize plants over meats, eliminate processed foods and limits animal and dairy products.
I personally think most of us who eat a western diet eat too much meat, fast food and processed food. In that sense, emphasizing plants like fruits and vegetables is probably something most of us need to learn to do.
I think a whole food plant based diet that restricts, but does not eliminate, meat and dairy products looks a lot like updated food pyramids anyway. I do not call what I do a plant based diet, but I do try to increase veggies and fruits in my diet while decreasing my meat intake. I eat better than I did at my diagnosis, but I have a long way to go.
I personally do not care for diets that eliminate food groups. I think a plant based diet that allows animal products in moderation is a good choice, but I know vegetarians who I think are quite healthy as well. I think being purely vegetarian calls for more will power than most of us have.
cajunjeff,
I agree. Whole foods means as little processed as possible. While I am almost vegan at times I don't sweat the few times a month I will eat animal based protein. I figure if I am 85% to 90% vegetarian I am getting most of the benefit. If we go out for bar-b-que with friends I'm going to enjoy a large plate of meat guilt free.
Hal
If grass fed beef is also plant based I wholeheartedly agree 
BTW I think everything is plant based, the question is only how high up the chain you eat the link leading down to the plant.
I laughed out loud at "grass fed beef".😀
Why did you laugh?
Calling a cow a plant because it eats grass was classic!
Yes, that is not how I think either. But if one is going to eat beef, eating beef from grass fed cattle is by far the best option. And has proven benefits over beef from cereal fed animals.
By the way I recently ran across research that gives scientific back-up to what's been said for ages about red meat causing arthritis to flare.
Yes, and it is US Feedlot Beef, not grass fed, that has extremely high levels of arachidonic acid (the cause of most of the inflammation ) and very little CLA. There aren't abnormal ratios in beef that is grass, as opposed to grain, fed.
pubmed.ncbi.nlm.nih.gov/342...
Same thing as feedlot milk/dairy, that has higher levels of A1 beta casein protein. A2 milk, which includes sheep milk, doesn't seem to cause as many intolerance problems. This is the stuff we humans evolved on, before mass production & processing changed things. And FWIW, Einkorn (the original, unhybridized wheat that Homo Sapiens evolved eating) doesn't have the gluten and GI issues that modern processed hybridized wheat does.
So IMO it's not only the balance, but the source. So if you have a lot of issues, perhaps "cleaning up" your diet from the source may help. Otherwise, if your body tolerates the more modern form of foods, no problem.
My hematologist is very laid back & never alarmed about anything I do. She said enjoy life and moderation but no fad diets.
I love ur name. I don't punish myself. Eat whatever I want. I actually eat quite unhealthy compared to most but I don't recommend that
Was on W&W 12 years and felt great. Had chemo 3 years ago & all ok. I do go to acupuncture but did that years before CLL. You are newly diagnosed and definitely understand your question. Don't play around with supplements. Just if ur B or D is low. Doc will tell ya .
Just be good to yourself and try to distract your brain. Keep copies of tests & reports. Ask questions of your hematologist if u don't understand something & if you don't feel comfortable with him/her then find another specialist. 💕🙏
Hi sugar03,-
Most of us had elevated White Blood Counts for years before the doctors realized it was not caused by a simple infection, and then started the investigative steps that lead to a CLL diagnosis. However an earlier diagnosis would not have made any difference since nearly everyone is put on Watch and Wait for several years after diagnosis.
-
As cajunjeff sweatbee and GMa27 suggest, a balanced diet with all things in moderation as recommended by most public health services, regular exercise and good weight control is the best way to survive longer, with or without CLL.
-
We have had many discussions on diet changes to alter or stop progression of CLL or any cancer. Most are poorly supported by testimonials from a few people, but no scientific comparisons.
see
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
-
If you have additional questions or want to learn more- please look at the Pinned Posts on this page, and ask us when you need help finding specifics.
-
Len
Thank you, Len.
Len the articles are quite helpful. Thank you for the links.
I think we need to remember that doctors and consultants have no training in food and nutrition. Be your own food advisor and do some research. These are a few of the books I have read to make my mind up: How not to Die by Dr M Greiger, Your Life in Your Hands by Prof Jane Plant and The China Study by Dr T C Campbell. All these books are written by doctors or scientists and have solid research behind them. Then decide for yourself! Good luck. ❤️
The China Study was a world changer for me. The science and documentation was impressive.
That's a good question to ask. Nobody will give you a definite answer but if you are willing to put in the time and effort, you'll find it yourself. A good place to start your investigations is here:
youtube.com/watch?v=jpNU72d...
Then take it from there.
Avoid everything that is known to cause harm. It's just as important as eating stuff that is known to be beneficial. Once you eat beneficial things only and avoid things that harm you, you'll be there
A healthy amount of fruit is 1 piece a day for me. And I don't mean a whole watermelon. Why? Too much fructose is harmful.
And I could go on and on. If you have any specific question just send me a private message.
Good luck.
My cll specialist is also very laid back on diets and supplements. He has always maintained a need for a moderate diet but with more emphasis on regular and continuing aerobic exercise ( I row 3-4 times/week)
He has not focused on supplements other than to ask that I take D3 vitamins -2,000 IU daily. He mentioned interval fasting a few years ago - not necessarily to start it but to read up on it and see if I would be interested. My partner and I did start up and have maintained it. We aren’t fanatical about it but we tend to eat only between noon and 8 pm. It becomes quite easy and you end up eating two meals a day plus snacks. However, you must stay hydrated throughout the day (plus coffee/tea whenever)
At my diagnosis I asked if there was anything I could do myself. My MSK doctor told me about a study finding green tea may be effective in reducing lymphocytes. But that study would require an impossible amount of drinking green tea (it used the key ingredient in it and it was an excessive amount that could be dangerous if one were to do it on their own without a doctor monitoring blood work). Another doctor mentioned there had been a study finding that cycling increased T cells. I did add green tea to my daily diet and increased my use of a Spin cycle. Also read positive things about other supplements and added them to my diet eg turmeric, omega and vitamin D. I changed my nutrition completely, lost about 20 lbs and now rarely eat red meat cut down alcohol and have fruit and greens every day. Alas i still have more nodes up now than ever before and my white cells are on a rise (after going down initially). So who knows? (I have been told that the healthier you can get your body metabolically the easier treatment will be when or if the time comes).
As much as we are told "everything in moderation" or "balanced" etc., none of those words have meaning without knowing where you start and where you are going. Even the "simple" concepts of "plant-based", "protein" and "carb" or "sugar" are quite muddied and mis-understood. You need protein. It is the only thing that mends cells and creates them. It is your choice how to get your protein, and it is arguable how much you need, but do not slump in that area, it should be prioritized. You need vitamins from food and that means bright and darkly colored vegetables. No supplement can ever measure up because science still hasn't determined exactly which ones and how much we need; they are still finding out. Do not add anything else to your diet until you have taken in enough of those two things. Fruit does NOT have equitable vitamins to vegetables and should not be substituted. If you have any health concerns beyond CLL treat those seriously, they are very likely more immediately harmful. Diabetes in particular has dietary needs that must be prioritized. Bread, pasta, noodles and beans are fillers and should be thought of as such...is your body sufficiently nourished and full without them? Sugar of any kind has zero nutritional value, it shouldn't take place of a food that offers nutrition. Your liver (chemically) believes that alcohol is a poison, how much would you like to detox tonight? None of these things absolutely must be taken off the table....but think of your priorities when choosing how to fill your body.
Rant over. My best to you!
Thank you so much, Ladylin. my main health concern now, other than CLL is asthma.i do have a good treatment plan for that.
Hi.. Welcome to the family! When I was diagnosed, I asked the haematologist what things I should be doing now, and he just said, “Avoid infections.” Good luck. Stay safe.
I echo what nearly everyone says here. The main goal is to stay healthy. Avoid infection. I eat small portions of meat, little processed foods and loads of fresh vegetables and fruit. I have an occasional glass of wine or Bloody Mary and sometimes dessert! I exercise daily and have not been sick one single time in the ten years since suspected onset. I am still watch and wait and working full time. Settle in and you will figure out what is best for you to stay healthy.
Lots of green vegetables fresh citrus fruits sports peace of mind and forget about CLL
There are many excellent suggestions here, but the most important thing for me was to learn to manage my stress and anxiety. This is going to be a hopefully a long relationship with CLL. I have been in this relationship for 17 years, and every year that goes by, it gets a little easier. Pay attention to what your body is telling you, but the most important thing that I learned in the process is to be good to myself. A healthy life style starts with a healthy and peaceful mind set…
This is a great post. I look forward to reading everyone's responses. So I am that person! I am a non meat eater since the 80s - I did add in fish in 2000 when pregnant w/ my son. I was guilted into salmon. I eat very healthy and recently went very low on sugar. The key is to eat often in small quantities, literally every 2.5 hrs. Your metabolism will love you. But.... I got CLL. Why? I often joke that maybe wine and weed would have been more fun! lol. Ok back to reality. I follow higher non meat protein, low sugar, some carbs - some fruit (1-2 servings) Alcohol in moderation. My splurge is typically soft serve chocolate ice cream cone.! yum. Don't worry, be happy...
I wonder if you have come across some earlier post by CBME about CLL diet. It may be of interest to you. healthunlocked.com/cllsuppo.... In particular some NIH research article had suggested a CLL diet with Tumeric & Green tea.
CLL Society has literatur on CLL diet and also a consultant service for specific questions and recommendations. Check with the CLL Society information line. Gook luck! AND important daily exercise - walking and other exercises, because muscles and respiration need to be involved in processing the CLL therapy RX.
Someone here recommended Dr. Greger's book, "How Not to Die." I second that! I try to eat a whole foods plant based diet high in anti-cancer foods. I've noticed when I eat broccoli or other cruciferous vegetables daily my absolute lymphocyte count goes down. That's enough evidence for me. I've been on watch and wait for nearly 16 years. Knock wood.
To the best of my knowledge, there are no special diets for Cll. However, you may want to consider other aspects of your health. For example, monitor your weight, you could start to lose some weight as you progress through W&W. If you are diabetic, a loss in weight would change how you are managing diabetes. Think of your body as a single, complicated system. In this age of specialists, patients tend to get parsed into single focused issues. But, all these issues are part of you, you have one body. Best wishes.
To get completely usable protin from plants, the book "Diet for a Small Planet" by Frances Moore Lappé explains how. Only egg white is the "ideal protein", in that it has all 7 essential amino acids in the correct ratios for our bodies to be able to utilize virtually 100% of it to build protein. Other foods "high in protein", like, say, peanuts, don't have the near perfect ratio of all 7 and (in this instance) happen to be around 50% "usable" in terms of your daily protein needs. So, a Peanut Butter sandwich on wheat, with milk, boosts the total available protein because all 3 of those protein sources "complement", or fill in the gaps, of the amino acids the others lack.I have read that quinoa has all 7 essential amino acids, but haven't seen the documentation to verify it. I just enjoy it with olive oil, regardless!
The latest finding just appeared in a May 2021 article in a research journal called "Cells." Duke University researchers found that regular aerobic exercise appears to make the blood plasma of CLL patients (at the watch & wait stage) less supportive of CLL cancer cells.
The researchers didn't determine why the exercise helped but they hypothesized that exercise reduces the amount of lipids (fats and oils) in the blood stream. Earlier research had found that CLL cancer cells scarf up lipids from the blood stream for use when they multiply:
So, I recommend that you engage in a regular aerobic exercise program, no matter what you eat!
Newly diagnosed with CLL
Extreme fatigue and CLL
CLL and breast cancer
CLL... Just tired of it all..
