Hi everyone at age 46 I was unfortunately diagnosed with CLL, I want to know please what to avoid eating and what's good for me, thanks a lot.
Firas
What to avoid eating if you have CLL? - CLL Support
What to avoid eating if you have CLL?
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Nour80Leen2011
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36 Replies
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This is a hot potato subject and you will find different views. Take a look at some of the precious related posts that are available as links on this page for some more information.
It does depend a lot on what you are trying to achieve and at what stage of the illness you are.
Some of us are needing to lose weight at the beginning of the illness, with a desire to reduce the amount of mass our poor fatigued muscles are carrying around, and perhaps even slow the illness.
If that’s the goal there seems to be some consensus on increasing vegetables and fruit especially the ones without too much sugar in them, reduce or remove processed food and added sugar or salt, possibly reducing or eliminating certain meats (eg processed and possibly red) and perhaps cutting back on any food that might be causing inflammation. Some people will go further and think of a ketogenic diet in such a situation or even intermittent fasting.
If someone has started to loose weight dramatically not because they need to but due to the illness obviously the advice would be different with a need to eat calorie dense food.
There is also something called the neutropenic diet which you can look up. That essentially restricting foods which may be likely to carry infection. This is vital for us when we become neutropenic, but as we are somewhat immune compromised from diagnosis it’s perhaps good practice to begin to avoid at least some of these foods early on tho the whole diet may be a bit overkill.
There’s no one answer on what we should eat. But I hope that gives some pointers.
Beets. Definitely don't eat Beets. Well, that's not a CLL thing...Beets are just horrible tasting things....and as far as I am concerned will likely kill you after just one bite.
Scott
Indolent in reply to
Beets?? You can't beat em!
Marie-54 in reply to
Beets are the best thing in the world. You just have to learn how to cook them properly and then smother them with a bit of butter.mmmmmmmmmm
in reply to Marie-54
I don't think I can cook them properly as I don't have a flame thrower...but Renee just told me Tesla/Elon Musk is selling consumer grade flame throwers....I guess I could give that a try.
Scott
Cmac70 in reply to
Ok scott you have gone to far,lol I love beets, but hey we all have things we really dislike green beans are mine.
Chris
in reply to Cmac70
Whaaaaaaat? But But But.... green beans are the best!!! Same with Broccoli.
TimHB in reply to
I AGREE!! Beets should be outlawed and exterminated.
SMS-not-cll in reply to
Pickled eggs and red beets in red beet juice enhanced with vinegar and some sugar (Pennsylvania Dutch recipe) are one of my family’s favorite foods. Beets were one of the few vegetables I could eat after my colon cancer surgery and my “strange” appendectomy. Yummy.
Sidebar: My sister can not tolerate beets. She says they taste like dirt to her. I find that fascinating!
Wishing good days and good health to all....a a few beets, if you like them..
SMS
lexie in reply to
Hate beets, taste like moldy dirt to me, and stink, but grow and love beet greens. Go figure.
It’s great you were diagnosed early. What ever diet you choose, definitely stay away from all “processed sugars”. Better yet, try to avoid all processed food. Do a food allergy test. Find out if you should avoid gluten. Drink plenty of water.
The only "forbidden fruit" my doctor warned me about is grapefruit, which was upsetting because I enjoyed having one every day. (It's contra-indicated with ibrutinib.) And Seville oranges (not regular oranges) but I don't even know what that is so no bother. Otherwise I eat anything and everything because I lost 25 lbs with my CLL and am struggling to regain 10 lbs. At the chemo center I go to weekly a nutritionist hands out junk food because she said we just need lots of empty calories.
Seville oranges are the blood oranges. Made in Sicily very bitter
I don't think so. I'm allowed blood oranges which I have every day. I'm told Seville oranges are in marmalade which I've never been a fan of anyway.
You are right Tim, Seville oranges are called bitter orange and are not blood oranges
Blood Oranges. Originating in Spain and Sicily with varieties including Moro, Sanguinello and Tarocco blood oranges may also be known as Sicilian Blood Oranges with the Arancia Rossa di Sicilia or the Red Orange of Sicily having Protected Geographical Status.Jan
I think the first thing for me is to have a reasonably balanced diet of good (not junk) food. Others have stronger views and have gone down different routes. Some fish, some meat and lots of veg.
My view of balanced is that I don’t need a load of supplements to maintain levels. I do take one supplement (Vit D3 and Calcium combined) as my levels of those have been tested and have been low. Living in a relatively Northern latitude and not prepared to sit in sun all days I was able to square this off in my mind.
Only things I avoid are filter feeding shellfish (bleugh) because I don't like them. Also because I’m on Ibrutinib and Venetoclax no Grapefruit, Seville oranges (marmelade), Pomelos and Starfruit as they are all contraindicated.
It really comes down to taking advice from your medical team and what works for you.
best to all, rob
Stay away from simplex carbs , refined sugar , fructose and glucose . Eat complex carbs and veggies , cut processed food and lower your red meat intake drastically.
Seeds , nuts and plant protein are the best. Cut your dairy intake as well
Take vitamin D3 and a good multivitamin
Eat fruits and veggies and take an iron supplement
Thanks dear
Something I read made me note NOT to take Iron. I knew long before that Iron can be bad because bacteria need it (which is why the old practice of bleeding actually had some benefit with bacterial infections). I don't recall what medical article indicated this, but I know I came away with the belief the cancerous B cells need it. So would love to hear more about why you think iron is good.
Wild caught halibut , salmon and sardines are excellent and organic brown rice , gluten free
Brown rice in the States likely have arsenic, but soaking in water overnight and tossing the water before cooking will remove about 90% if I remember correctly. There are a couple brands that are very careful and monitor their rice to keep this down. One is:
In my studies of this new (to me) disease, I came across the harmfulness of purines. And that sardines are very high in purines. I love sardines and they were often my protein, but I've stopped eating them for this reason.
Could be an iissue if you have a Problem with gout
You might on a whim try googling purines and CLL because I bet you'll find what I'm talking about. I do not have any gout issue, but you are right -- not good for gout either.
Dr google News doesn’t really interest me. We would not be eating anything. Because There is so much bad info on Dr google.
Added sugar and processed meats i am sure are far worse and gluten.
You would have to probably be eating 6 cans of sardines a day for it to effect your health.
I suggest you start by tracking your intake. There are numerous “apps” for this, a good free one is on Liivestrong dot com. With this information in hand a good nutritionist will be able to guide you in your fight for life. You need to be strong, mentally, emotionally, and physically; surround yourself with caregivers that you can learn from and you can trust. Hopefully it’s a longer path than you now perceive. It will take all your strength and persistence to live a long life.
Hello, dietary choices can be overwhelming until you find what works best for your body. I am CLL/SLL Stage 1 and very focused on an organic plant based diet full of phytonutrients and yummy goodness. As everyone mentioned stay away from processed foods, sugar, alcohol etc. Consume probiotic rich foods that keep your gut mictobiome healthy and strong to boost your immune system. I am also taking sacred seven mushroom extract for my immune system and notice a difference. Make every meal count and keep a log for awhile to track how you feel. Most of all nurture your relationships and find joy and gratitude in every day. Best to you.
Are you taking the Chaga mushroom extract tea ?
No, I am not. The Sacred seven mushroom extract powder has Chaga in it though. Best to you.
I have taken AHCC, a mushroom based immune enhancer. But I stopped taking it because I thought -- do we really want something that messes with our immune system by enhancing it (like, say, increasing B cells or white cells?) Because of this concern, because I don't know how we with CLL respond to "immune enhancers", I've stopped the AHCC, stopped Beta Glucans, and some other immune enhancers. Would love to hear from others about this.
There is so much information to research. Follow your instincts and observe how your body feels.
I wish you vitality and strength. I am sure others will have more detailed replies about enhancing the immune system.
Hi Firas,
Some time back made a post on a similar topic recommending Life Over Cancer by Keith I. Block M.D.
This is not a CLL specific book but does have some good diet advice if you are not sure where to start.
With regards.
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