I'm at the wait-and-see stage with my CLL and have been hoping to delay treatment by eating anti-cancer foods. I'm a researcher with a PhD, so my first inclination was to look up the scholarly research. There are four foods that have been effective against CLL in the laboratory:
4. Sulforaphane (SFN): broccoli, cabbage, kale and the other members of the cabbage family.
My first thought was that I should add as many anti-cancer foods to my diet as possible That would make it harder on my cancerous lymphocytes because they might be able to fight off some, but not all of them.
But some of these foods are "antagonists," meaning they are less effective together then by themselves. In contrast, some are "synergists," so they are better eaten together than either is alone. Here's what I've learned so far:
1. EGCG and Curcumin are antagonists.
2. EGCG and EA are antagonists.
3. Curcumin and EA are synergists.
4. Curcumin and SFN are synergists.
If you are already being treated for CLL, consult your doctor before eating these foods. They may be antagonists of your chemotherapy.
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HowardR
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I agree with the part about consulting with a doctor before embarking on any unusual diet. I did with my doctor at md anderson. He suggested I eat healthy and could drink green tea (if I liked the taste of green tea, not because it would treat my Cll). He told me there were no supplements or particular foods that would effectively treat my Cll, but encouraged me to eat healthy and exercise. It is well accepted that otherwise healthy people do better than unhealthy counterparts fighting any disease.
I find the term “anti-cancer” foods to be vague. If by anti-cancer, you mean foods that are known to help prevent cancer, I think it is widely accepted if we eat a diet rich in fresh fruits and vegetables and limit sugars and processed foods, we are at less risk for certain cancers. An anti-cancer diet that helps prevent cancer is not much different than the ordinary healthy diet we should eat anyway. I sure wish I had eaten healthier growing up in the fast food era.
If by anti-cancer you mean foods that “treat” our existing cancer, I don’t know of any food that has been proven to have any real impact on keeping our Cll cells from dividing or slowing that down. That doesn’t mean we shouldn’t eat anti-cancer foods, if what you are talking about is eating a variety of healthy fruits and vegetables. I think that is excellent and common sense advice.
I don’t think eating unnatural amounts of these foods that can be found in unregulated supplements is a good idea.
I'm not entirely sure what you are saying here HowardR.
Your sentence ending "that have been effective against CLL in the laboratory" is vague and non specific which, as a researcher, you will appreciate renders it of no value whatsoever. What is the definition of effective in this situation, what sort of lab experiment and what type of CLL cells (relapsed? 11q? unmutated???). A lack of references is not helpful. AussieNeil has some experience of EGCG and Curcumin and may wish to comment.
Unfortunately, scholarly research does not always translate into clinical effectiveness. Many of is would be elated if there was an "anti cancer" food or substance that we could take that would delay progression of our disease but I don't see any evidence of one here.
Howard, further to Jackie's pertinent reply, may I recommend you spend some time researching stromal protection and CLL or how CLL cells control their microenvironment to ensure their survival. You also need to appreciate that any research of CLL cells in in vitro experiments will usually give misleading information regarding their vulnerability. CLL cells in the peripheral blood are easily destroyed. They have a weaker cell membrane than healthy B-cells, hence the occurrence of smudge cells in blood slides when you have CLL. CLL cells in vitro eventually die on their own, or quite readily when exposed to what you've listed, but in our nodes they are much more resilient.
Thank you for the article about stromal protection. In my reading I found this study which found that a protein kinase inhibitor decreases the stromal protection for CLL lymphocytes ( stm.sciencemag.org/content/... ). EA is a protein kinase inhibitor.
The logic behind the famous green tea study was that since it appears a little EGCG does have some cancer fighting qualities, that large amounts of it would have a true therapeutic effect. That sounds logical and perhaps worth a look, but that's not really how things work.
I have a good friend who loves wine, maybe too much. His primary doctor told him years ago to cut back.
His favorite study is the wine study that shows health benefits of a glass a wine a day that evidently promotes heart health and our digestive system. Predictably his logic is that if one glass of wine a day is good for you, ten glasses is ten times as good.
The little science we have with EGCG is that it does somehow help fight cancer but that the amounts of it necessary to have any substantive therapeutic effect can be toxic.
So Howard, we often end up on here with circular debates about green tea and people cherry picking facts from studies to support its use, when its efficacy is not widely accepted by the medical community.
I am fine with anyone using green tea or any natural remedy they want. Its their body, their right. I think where one has to be careful is on a forum like this where you have so many people wishing for natural remedies that work and vulnerable to information not supported by science. Touting the success of a natural remedy is tantamount to promoting it. That's where we have to be careful.
I like to keep an open mind. Show me where renowned cll experts like Keating, Sharman, Brown, Byrd, Lamanna, Hillmen, Follows and Weirda are supporting a particular remedy and I would love to learn about it.
With reference to Curcumin from Turmeric, I've added a plot of the changes in lymphocte count of clinical trial patients on a formulated blend of turmeric that was developed to achieve high blood serum levels to this post healthunlocked.com/cllsuppo...
I plotted the counts from data in the paper I referenced in my reply, whereas the paper used an algorithm to determine who were and weren't responders to the turmeric. Note the disappointingly minor difference in the progression in lymphocte count between the responder and non responder groups. Further, only four of the 21 in the trial were deemed to be responders. That's a pretty disappointing result - less than 20% responding.
For many years I alternated EGCG/Green Tea and Turmeric to try and slow my CLL progression. I suspect turmeric helped reduce arthritic pain in my hands, but I'm not convinced it did anything to slow my CLL progression. Likewise after 11 years on green tea, I don't know what effect, if any, the EGCG had on my CLL progression. While my nodes and spleen didn't change much, it was the effects of bone marrow infiltration that resulted in my need for treatment. I didn't see a drop in my ALC because I started off with a SLL presentation. I also found out after 10 years of watch and wait that I had the right genetics for a long watch and wait, being IgHV mutated.
Given the digestive distress side effects of EGCG (which led to some Mayo Clinic trial participants dropping out of the trial) and the recognised liver poisoning risk, along with the current excellent non-chemo drugs with a lower side effect profile than older treatments, not to mention the valid concerns with buying supplements that contain what they claim to contain, no more and no less, I think the day of trying to slow CLL progression by taking high dose supplements has passed unless you live where the newer drugs are unavailable/financially inaccessible. I very much doubt you'd get high enough doses of any of the foods you list by just eating them - or at least not without making yourself sick!
The dosage of EGCG in the Johns Hopkins study was 4 grams per day (if I remember correctly). They found that even at such an extreme dose, EGCG was not very toxic. One fault of that study was that they did not prevent their participants from eating anti-oxidants that were antagonists of EGCG. In my posting I mentioned two of them (Curcumin and EA). Anti-oxidants are commonly used as preservatives in prepared food and may have been even been consumed inadvertently by some of the subjects of that study.
Again, references please, as our memories can be faulty. For example, I don't know of any Johns Hopkins EGCG studies, but I do know of the two Mayo Clinic Phase I and II EGCG reports and elevated transaminases were listed as concerning side effects that limited the dose that could be safely taken. The phase I trial found the response was proportional to the dose taken, so the response possible was side effect limited. I personally found that I could only manage about 2 grams per day of EGCG before elevated transamines concerned my CLL specialist.
Quoting from the Toxicology and Tolerability section:
"During the 6 months of active treatment 13/42 (31%) of patients required a dose reduction. Side effects at least possibly attributed to therapy during the 6 months of active treatment were generally mild with 18(43%) patients having a maximum of a grade 2 event and 3(7%) patients having a grade 3 event.
:
6 patients were forced to discontinue treatment after experiencing ≥grade 2 transaminitis"
So while the side effects were considered "generally mild", this paper was written by researchers into much more powerful blood cancer drugs and 15% (6/42) patients were forced to discontinue treatment after experiencing ≥grade 2 transaminitis.
It was this paper that encouraged me to take about 2 grams of EGCG per day for 11 years, but I informed my medical team so that they monitored my liver function tests. It's not something you would be wise to do without medical supervision.
With the much more selective non-chemo drugs with reduced side effects available now and given Dr Neil Kay*, one of the authors of the paper, publicly advising those with CLL not to take green tea tablets "because we don't know what's in them", I'm not sure I'd use high dose green tea now, particularly if I lived in a country with inadequate regulation of the supplements industry, like the USA and most other countries. In Australia, supplements are required to be registered with the Therapeutic Goods Administration, our equivalent of the USA's FDA.
* There was a Patient Power interview with Dr Neil Kay where he gave this warning, which is referenced in a previous post on this topic. Unfortunately it appears that Patient Power deleted the interview from their website.
If you do that, then per the Mayo Clinic phase I trial finding that the CLL response is proportional to the dose, you get a reduced effect on the CLL.
You've done some good research working out what's synergistic and antagonistic, but you haven't appreciated:
a) How high a blood concentration you need to achieve to actually kill CLL cells in vivo. You are unlikely to achieve this concentration just by eating food. The difficulty with achieving a high concentration and long half life in the blood of curcumin from turmeric is a good example. The liver quickly processes the active ingredient.
b) IF you do get a sufficiently high concentration to match what is observed to work in vitro, you still have to overcome the stromal protection CLL cells have in the nodes and spleen and particularly in the bone marrow. Even some powerful conventional drugs struggle to reduce CLL bone marrow infiltration.
With antagonistic foods (or more realistically supplements), then you need to know the active ingredient half life so you can space ingestion time wise to avoid antagonistic effects. Then because you typically can't get high enough blood concentration with foods, you face the problem of contamination of supplements with heavy metals, pesticides and so on. Unfortunately China doesn't have a good reputation in this regard and they are a major supplier of herbal supplements. They do see TCM as a huge market however, but supplements are still generally an unregulated market and there is no guarantee you get what you pay for.
As part of the Therapeutic Goods Authority regulation of the supplements industry in Australia, tga.gov.au/overview-regulat...
known dangerous herbs are banned from importation. See this TGA warning about internet purchases tga.gov.au/buying-medicines...
If other countries had at least this level of consumer protection, then perhaps you could more confidently experiment, but you are still going to get side effects and are unlikely to see anywhere near the response rate achieved with approved treatments.
There is no need to buy pills in order to eat curcumin, EA or SFN. The best source for curcumin is the Indian spice turmeric. The best source for EA is the Indian spice anardana. SFN pills have such a negligible concentration that you are better off eating a daily cabbage salad. So EGCG is the only pill you need to purchase. Have you discovered a reliable brand?
Have you references or done the calculations to confirm that you can really achieve sufficient blood serum concentrations to trigger apoptosis in CLL cells from just eating the relevant foods?
Did you inspect the ALC plots from patients taking the formulated blend of turmeric that was developed to achieve high blood serum levels? healthunlocked.com/cllsuppo... That formulation was designed to achieve concentrations up to 80 times what you get from just taking turmeric.
With respect to a reliable supply of EGCG, last I checked, supply had been discontinued.
I very much appreciate your responses to my posts. I'm new to this area of research, as I was just diagnosed in April, and all of my journal publications have been in psychology and economics. You've been at this a lot longer, so I know I am going to learn a lot by reading the references that you have posted.
Due to the antagonism of EGCG to EA and Curcumin, I just started an experiment on myself in which I only take about 1 gram of EGCG in the morning (800 mg supplement plus 3 green tea bags steeped for at least 10 minutes), and won't take it (or drink any green tea, black tea or coffee) at any other time of day. The half lives of curcumin and EA are about 2 hours, and the two are complements, so I am trying to eat turmeric and EA starting at lunch time about every 2 hours right through the evening, but not at especially high concentrations.
One tsp of turmeric is about 50mg curcumin, I'm supplementing the 2 or 3 tsp that I eat per day with a low dose (200mg) supplement pill with lunch and another at supper. I also take a low dose aspirin (81mg) with lunch (to keep my blood thin) and always have pepper in my supper dish, both of which help activate the curcumin. So I'm within the range of doses of curcumin that can be effective, but I am definitely not eating an excessive amount.
I get all my SFN by eating sauerkraut and raw cabbage salads (often with other sources of SFN including broccoli sprouts or kale). I'm sure the amount of SFN that I am getting is very low, not enough to affect much of anything. But the SFN pills only have 5mg of SFN in them, which is also miniscule.
My main experiment on myself is the EA. I am relying upon anardana to be my main source, though I also drink pure rose hips tea (without hibiscus) and occasionally eat blackberries, strawberries or strawberry jam. (I often add an equal amount of powdered pomegranate juice to complement the anardana's bitter flavor.) As far as I can tell, the existing pills are simply encapsulated powdered anardana, so there are no purified supplements available. Moreover, there have been no clinical trials using EA in the laboratory, so no effective treatment dosage has been established.
New journal articles about EA and cancer are coming out almost every month. It may be able to prevent stromal support for CLL leukocytes while causing their apoptosis. It's synergism with curcumin makes it an obvious candidate for a clinical trial involving both. (But such a trial would have to prevent subjects from drinking green tea, coffee or black tea at the same time, as I believe all of them contain anti-oxidants that are antagonistic to both EA and curcumin.) Maybe you'll conduct that clinical trial!
In the meantime, the only subject of my experiment is myself. My goal is to delay the time when I will need active treatment. If I succeed at delaying it for the 11 years that you achieved with the help of EGCG and curcumin, I will consider my experiment to be a *huge* success.
Do you have access to the 4 subjects of that curcumin study who responded well to the curcumin? Could you send them a questionnaire to find out whether they are tea, coffee, or green tea drinkers? It could be that the curcumin is more effective when subjects aren't drinking antagonists at the same time.
In over a decade of monitoring CLL forums, nearly all the reports of significant tumour burden reductions with supplements have come from people taking high dose green tea capsules for the effect of the EGCG. There are lots of reports of positive effects from dietary and other supplements which I have to dismiss because they are too light on detail, such as reporting a 40% reduction in WBC, but with no mention of what the absolute change was in their lymphocyte count and no mention of what happened to node and spleen size or of improvements in other blood counts (indicating a reduction in bone marrow infiltration).
As you can see in the Turmeric supplement study, it is not unusual to see large swings in lymphocyte count when not taking turmeric. A lymphocyte count change from 200 to 120 is much more notable than a change from 20 to 12. Even then, you need to be sure that what's happening is not just a redistribution of CLL cells from the blood to nodes, spleen and bone marrow.
I don't know of anyone who has gone into this level of analysis into the effect of different classes of active apoptosis ingredients in foods, but nowhere do I recall you mentioning any investigation into weight and fitness. In my opinion, there is more evidence of positive effects from reducing weight and improving fitness than dietary changes to boost apoptosis. If you are overweight, reducing your weight to reduce inflammation is likely to do more for your tumour burden than any other intervention.
I strongly recommend that you use a spreadsheet to track your progress. You can find one here. cllsociety.org/toolbox/keep...
I wish you well in your efforts, but warn you that the outcome of dietary interventions are down in the noise of the 1% of spontaneous remissions, compared to to 80% + result of new drugs in achieving meaningful responses.
I get exercise and am closer to underweight than overweight. Since my diagnosis in April I have run a half marathon (my last) and three 5Ks. And that means that I have been running or jogging about 6 to 10 miles a week. Not bad for someone who is about 70!
As far as food goes, there is little danger unless you overdo. I believe in trusting your body and being in touch with how you feel. Cut back on foods that are making you feel sick to the stomach and don't eat foods that taste bad to you! Your diet should be something that you would be willing to keep up forever, if it is working.
By the way, anardana tastes bitter. It is eaten by the Indians as a way to combat acid indigestion (a sort of Indian bicarbonate of soda), and turmeric tastes a bit sour. The two taste pretty good together and could be easier on the stomach together than either would be alone.
In order to see for yourself how they taste together, try my salad dressing which I posted on this website a month ago:
>>With respect to a reliable supply of EGCG, last I checked, supply had been discontinued.
My local compounding pharmacy told me they have access to FDA approved EGCG in various forms including powder which can be encapsulated. Cost would be approximately $200 for 100 capsules (capsules being somewhere in the 2-4gr range...didn't want to ask a multitude of questions in this first inquiry). A larger order might come with a discount.
When I tried EGCG back when it was all the rage in CLL, I became very nauseous and my liver enzymes became elevated, so I stopped. It didn't stop my lymphocyte count from rising.
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