My Oncologist told me diet has no effect on CLL. Does anyone have input as to a good diet while undergoing treatment now that it is soon to start for me?
Even though we need Lipids, cutting back on them may help. Anybody heard that too?
I gained too much weight during 2020 pandemic, and feel that will influence how my body reacts to treatment.
Hugo - a few things to bear in mind when a doctor says that diet has no effect on CLL:
1. Doctors know very little about diet and nutrition. It isn't part of their education or training.
2. The word 'health' is bandied around as if that is what doctors are knowledgable about and practice. Doctors are not involved with health - they are involved with disease management.
Things however have changed, and many doctors around the world join forces with other health professionals and set up clinics that deal with the whole body, its nutrition and health. As Hipprocrates stated all those years ago about his own practice: "First I will change a patient's diet, and if that doesn't cure him, I will prescribe medicine. And if medicine doesn't provide a cure, I will resort to surgery."
The other good thing is that more research is being done on the gut microbiome / immune system, and how it is affected by foods. So diet is being studied by default by medical science. 40% to 50% approx. of the immune system resides in the digestive tract. The effect of diet therefore has to be significant.
This is not meant to diminish what doctors know and do. But just be cautious when a doctor talks about diet and CLL.
My bottom line for CLL is that the body's underlying condition of health sets the stage for how the W & W wait period plays out. It will also determine whether treatment is fairly plain sailing or a nightmare of side effects and adverse events. One day the research will be done, but in the meantime, when it comes to diet, and a doctor tells you that there's no evidence, it may mean that the research has been done and there's no evidence, or it may mean that no research has been done, so there's no evidence.
So self-advocacy is the key to this whole question of diet and CLL.
I would say that diet generally has a minimal effect on CLL. It's arguably the first thing people think about changing when they are diagnosed and diet is certainly an important part in improving your overall health. Most of us can improve our proportions of vegetables and fruit and cut down highly processed foods, plus foods which come with an increased risk of developing cancer (not forgetting tobacco and alcohol), which when we have a higher risk of some secondary cancers, is worth considering.
Strangely, most people ignore or place far less emphasis on improving their physical fitness and there is far, far more convincing evidence that being physical fit improves your outcome when you have any cancer: healthunlocked.com/cllsuppo...
Ironically, CLL cells can be stimulated by antigens in your food, particularly fungi, yeasts, molds, though generally it's supplement quantities that are more likely to have some effect. Avoid or at least carefully investigate anything that is promoted as an immune stimulant. Where there is good evidence that the immune system is boosted, it's nearly always through boosting lymphocyte production.
Neil
You have been a great resource for information. I do not want to sound stupid, but are you saying I should limit my consumption of antigens in my diet? Thanks, Dick
There are recognised drivers for CLL with a very important one being what stimulates the CLL B Cell Receptor (BCR). An antigen is a specific protein structure (epitope) found on bugs that make us ill. This is how B cells respond to infectious agents with this lock and key process. B cell surface membranes are covered with around 100,000 of these receptors. When B cells are produced, they come with a germinal receptor programmed into their DNA - the one we have inherited from our parents. When healthy B cells go through the maturation process with a helper T cell, they form an affinity for a specific antigen for whatever ails us. A good current example is parts of the SARS-CoV-2 spike protein from COVID-19 vaccinations. When the mature B cells come into contact with their matched antigen, it stimulates them to propagate, our nodes swell temporarily with the increase in lymphocytes before they move into the blood stream and eventually the bone marrow as mature plasma cells, where they make lots of antibodies/immunoglobulins, which are just the free floating part of the B cell receptor in different configurations, IgA, IgG and IgM etc.
Likewise, if our CLL cells come into contact with their specific matched antigen, it stimulates their survival and propagation - our CLL tumour can grow rapidly. It was thought that CLL B cell receptors would just be random. After all, they differ from the germinal B cell BCR due to errors that have occurred when they became cancerous. Some fascinating studies have shown that CLL BCRs are not random but stereotyped, with fungal antigens over represented. This paper is not the best describing this, but if you skim through it, you'll hopefully get some appreciation of the implications for those of us with stereotyped CLL: ncbi.nlm.nih.gov/pmc/articl...
The problem is that outside of research laboratories, it's not possible to know what could be driving your CLL, making it impossible to know what to avoid. Therefore, it's wise to have a range of different foods in your diet and if you are considering taking some supplement to hopefully slow your CLL progression, monitor different aspects of your CLL tumour load - your absolute lymphocyte count, node and spleen sizes, while checking for any impact on your bone marrow, by looking for changes in your other blood counts, specifically your haemoglobin and platelets, plus your other white blood cell types, primarily your neutrophil count.
Neil
Once again, a classical educated reply Neil. Love your replies.
Are you aware of any laboratory or research institute which provides service (at a cost) to identify what triggers our CLL BCR? Something similar to the allergy tests that are done?
Wonder if there is a correlation between food allergy test result and CLL BCR triggers?
More good questions. IgE is associated with allergies. You might find this of interest, but it's a small study with just a few with CLL and not at all conclusive: acsjournals.onlinelibrary.w...
I'm not aware of any research groups doing this kind of testing, but perhaps one of our US members may know. With the effectiveness of present drugs, it probably doesn't have the interest it once had for more than just research into CLL drivers.
Neil
My brain just went into overload. You are a wealth of info. Thanks!
I have enjoyed all the comments regarding nutrition. I am a vegetarian, CLL, W & W patient since 10/01/2020. So far so good. Thanks for all the responses. Betty USA
I was diagnosed in November, stage 4, straight to treatment. I have cut out blue cheese and cured meats, other wise I continue to enjoy generous portions red wine and red meat at Weekends. Week days I am now on the fast800 diet. However, holidays are a different matter...lol. BTW... diagnosis to remission 250 days..... great drugs and good red wine..
That’s amazing! What are you taking to get you into remission so quickly?
6 cycles of Obinatuzamab and Ibrutinib, now daily acalabrutinib
You may want to check my previous posts regarding this topic. Of course they are just one man's opinion.
It may be good to eat healthy and exercise that might either slow down cll progression or we may have fewer treatment side effects.
I’ve come across ‘Chris beat cancer’ program. He’s doing a free 10 module live videos. And actually sound very convincing that diet , exercise and a positive mindset might reduce our need for treatment.
I think there’s no harm in trying. Given all the time most of us have, before initiating treatment. why not try and eat healthy and see if we can avoid treatment.
I highly recommend you read through this blog fact checking Chris's claims: factcheckingchrisbeatcancer...
Sadly he has continued on with a dangerous distortion of the truth, starting from his initial claim that surgery can't cure cancer. He ignored evidence that the chemotherapy he refused after surgery, would have improved his chances of surviving his bowel cancer, already around 65%, by another ~10%, crediting his already good survival chances to his dietary changes.
Neil
That’s a good read Neil. Thank you for sharing 🙏Though I haven’t seen many of his videos. I don’t believe in eating all raw veggie diets or any other fads for that matter that can cure cancer. And I wasn’t going to follow everything he says. Just that it will help me remind myself to eat healthy, Stay away from processed and outside food. And exercise and of course GOD above everything. With a positive mindset and healthy choices we can at least delay treatment or face it with lesser side effects.
It is scary to know people actually died believing in his claims. 😞
I have found Dr Longo’s research interesting.valterlongo.com
I have used the 72 hour fasting period described (a separate clinical trial have deemed it to be safe) for a high dose MTX treatment (chemo treatment), and I did tolerate this very high dose chemo course well. The doctors expressed surprised at how my blood levels recovered and commented that they had not expected to see me looking so well.I have not looked thoroughly into his other work, but to me he seems to at least take his work serious.
I would shy away from Chris beats cancer and the other guy that charges $400 for a call.
I was also recommended a Cookbook called “how not to die” but my wife like cooking and is making delicious and healthy foods so it hasn’t been opened much.
G
After diagnosis of "prediabetes" at 37 I luckily got "scared to death" by one of the medical pioneers of "diet and exercise" (Dr. Harold Elrick: "Exercise is the best prescription"). I have kept diet and exercise since and at 87 my CMP is all normal and my A1c is 5.1 . I walk twice a day up the stairs to the 15th floor and feel then better then starting downstairs. This month' my blood pressure is all below 120 /80 - about ten points lower systolic then during the same period one year ago. I can only assume that is a result of: CoQ10 (suggested by Mayo for blood pressure control), unpasteurized apple cider vinegar (suggested by multiple source, and approved by my hematologist.) The vinegar acid kills the pathogens in the cider, and now strawberries (some studies) mixed in my "chocolate": Frozen organic blueberries and strawberries, walnuts, almonds, defatted peanut powder, dark cacao : Churn in food processor until solid paste . My top suggestion to you: No meat ! I use reduced salt free caught canned salmon. For dairy and calcium: Non fat, plain organic yogurt: The tub turned upside down over a sieve or colander. Drain several days until like farm cheese. Then add spice as desired.
The book N of 1 by Glenn Sabin is good.
And also I know someone personally who went on a raw food vegan diet and was able to bring the white count down from 150,000 to about 60,000 and delay treatment for a couple years. By that time she was able to go on a targeted drug and is doing well.
There is also a phase 1 and phase 2 clinical trial out of Mayo clinic on high-dose cream tea but if you do it work with the doctor because it send affect your liver.
Some of these things work OK if you have a very mild form of CLL.
Be well,
Hoffy
The first thing I would say is to ask to speak to the nutritionist at the hospital. When I asked my doctor, who does think outside the box, she told me to have a more alkaline diet rather than acid based (meat, alcohol). When you google it, you will get 20 different answers about what food are considered alkaline. We all probably know what is healthy. When you are going through treatment, that is different and you have to follow the hospitals guidelines. Good luck
I've been on Imbruvica for 3 years. I would like to blame this med for my excess weight, but no doubt my problem is my refrigerator and it's contents. I don't really feel I overeat or snack so much, but I have to confess, ice cream hits the spot when the temp is 90. I don't exercise or even take walks. I'm 75 and I guess just plain lazy. BUT, I am active. I clean a 7 room house, do laundry, floors, mow an acre of grass (rider of course), get up and down pulling weeds from flower beds, clean windows, etc. And that is just in the morning. lol I realize at my age and a family history of obesity that I'll never be a slim model. I don't like myself and always make jokes, but I can live with it. Had my booster Maderna today, wear 2 masks when I barely go to store and stay home and safe. Take care everybody.
Don’t beat yourself up ! It’s the Ibrutinib that puts the weight on sadly.
If you ever feel like slipping over to London to do my cleaning and weeding you will be very welcome anytime.
Colette
Just love your cheerfulness and honesty.Reckon when all else fails at the moment—- blame the government or COVID. 😂🤣😂
I’d like to put on some weight, maybe we can share...
you sound like you are amazingly active - go you!
Cheers Helen Australia 🇦🇺
From my view, diet is most important based upon what treatment you are taking. I am presently on Venetoclax and a moderately higher fat diet is recommended. Things like full fat milk and other similar things are on the plan. Perhaps we get to enjoy a little more ice cream as well, but in general, I have stopped watching the diet closely. I have gone from a place where I was losing or couldn’t gain weight on other forms of treatment (this is my 7th course of treatment) to a place where I have almost gotten back to my pre-diagnosis fighting weight. I’ve never heard of a diet that was supportive or negative to CLL but as I said, I do know that there are certain diets which are more supportive of the treatments that we get than others are. I find it helpful to actually go and download the dosing instructions from the drug manufacturers website for complete information, because the doctors never even gave me the full story on any new drug that was recommended.
Thank you Kevin! Glad you are holding your own!
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