I am at the "watch and worry" stage of CLL and I have been studying the literature in order to discover life-style changes (daily running helps) and supplements (curcumin and EGCG help - but not if taken together) that could delay the day when I have to start treatments.
Right now I'm thinking that adding NAC supplements to Curcumin or EGCG could be helpful. I weigh about 150 lbs. and at the beginning of May I started taking 600 mg NAC morning and then again evenings (with breakfast and supper). I had already been taking 1 gram Curcumin (from Turmeric) with breakfast and again at supper and about 2 grams of EGCG (from Green Tea) with lunch.
Yesterday, I went in for my regularly scheduled blood tests, and I just got my best result in over 2 years. This could be a coincidence, but maybe not.
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HowardR
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Thank you for your reply. There are two relevant studies that I know about:
1. N-acetylcysteine Can Induce Massive Oxidative Stress, Resulting in Cell Death with Apoptotic Features in Human Leukemia Cells : ncbi.nlm.nih.gov/pmc/articl...
2. Case Report of Unexpectedly Long Survival of Patient With Chronic Lymphocytic Leukemia: Why Integrative Methods Matter: ncbi.nlm.nih.gov/pmc/articl...
Both studies could be read as indications that NAC is effective when combined with SOD. Both EGCG and Curcumin support the body's natural production of SOD.
You are correct. There is no definite proof from these studies or from my recent blood test that NAC combined with Curcumin and EGCG will extend my life. On the other hand, the dosages that I am taking are pretty safe. Take NAC, for example: 1200mg per day has often been beneficial and has rarely been harmful. See: medicalnewstoday.com/articl...
I'm wondering if the test-tube B-cell studies of NAC were inconclusive because they didn't include extra-cellular SOD. The leukemia cells study found that NAC only induced leukemia cell death when SOD was present.
I separately found that EGCG and Turmeric each support the body's production of SOD. See, for example:
1.Curcumin. Superoxide dismutase: a key target for the neuroprotective effects of curcumin. link.springer.com/article/1...
2. EGCG. A review for physiological activities of EGCG and the role in improving fertility in humans/mammals. link.springer.com/article/1...
So, it is is possible to hypothesize that NAC makes any curcumin or EGCG that I take more effective. Here's the mechanism -- quoting the conclusion of the leukemia cells study:
"In conclusion, NAC can induce massive production of O2 in both, promyelocytic leukemia HL-60 and histiocytic lymphoma U937 cell lines. O2 itself does not induce the cell death. Its conversion to hydrogen peroxide by SOD is a necessary precondition for this...."
This thinly disguised advertising for an integrative medicine clinic, should never have been accepted for publication. I note that per imjournal.com/index.cfm/fus... , the Integrative medicine (Encinitas, Calif.) journal (IMCJ) editors include: 2 naturopathic doctors (NDs), 2 medical doctors (MDs), 1 doctor of chiropractic (DC).
The editorial review board consists of: 9 MDs, 8 NDs, 3 PhDs, 3 DCs, 1 doctor of oriental medicine (OMD),1 combined masters of business (MBA) and jurist doctorate (JD), and 1 masters of public health (MPH)
This N=1 case study came across to me as an exercise given by the Integrative Medicine clinic manager to a junior doctor to raise the profile of the clinic. Of note, early in the paper, the importance of using a range of prognostic tests to determine likely CLL disease progression is mentioned, but they either weren't done for the patient or were not included in the study paper. So Justhawk, as you so put so well, "The N=1 aspect and heterogeneous nature of CLL negates any and all conclusivity to the dietary/supplemental/integrative based contribution in this patient's case."
When I checked out the expertise of the clinic, after first seeing this case study referenced to support integrative medicine management for CLL, none of the clinic practitioners had any background in blood cancers that I could determine. That inexperience shows in the lack of knowledge about CLL exhibited in the paper. The patient concerned was fortunate that their CLL was "stable and indolent" as noted in the case study and that they weren't out of pocket for more aggressive 'treatments', such as IV vitamin C infusions, for which there's no good evidence of effectiveness for CLL.
Nevertheless, "N of 1" studies can be useful as suggestions for larger research studies. I would especially like to see Curcumin and/or EGCG combined with NAC in a double-blind study.
Also, some of the dietary and lifestyle changes that she made to extend her life could be a good guide for others who are at the "Watch and Worry" stage of CLL. Here's what she did:
Dietary supplements:
1. Curcumin
2. EGCG (1800 mg per day)
3. NAC
4. Vitamins K2 and D3
5. Mixed omega-3/omega-6 oil
6. Combination of milk thistle and broccoli extract
7. Methylation support product (Methyl B12, methylfolate, riboflavin, vitamin B6, and trimethylglycin)
8. Low-dose dehydroepiandrosterone
Diet and Exercise Changes:
1. Eliminating dairy
2. Increasing the consumption of quality fats, fruits, vegetables
3. Decreased animal protein
4. Walking daily to maintain a level of physical activity
There may be a hidden factor at work in these dietary changes. Eliminating dairy and decreasing animal protein would reduce a person's lipid consumption, and CLL cells rely upon lipids as an energy source. See: Chronic Lymphocytic Leukaemia Relies on Lipid Scavenging and Synthesis As an Energy Source ashpublications.org/blood/a...
Why could these be a 'good guide'? The major problem with this N of 1 study is that we don't know the woman's prognostic markers - even though the cases study states, with my emphasis "A number of prognostic markers are used in tracking the progression of CLL, including lymphocyte doubling time, level of immunoglobulin variable region of the heavy chain variation, CD-38 expression, Zap-70 expression, β-2-microglobulin levels, and serum CD-23 levels." Then later it correctly states "..many patients remain asymptomatic for a number of years." With the exception of the WBC count plot and the addition of high dose EGCG in the latter part of 2009 (when lymphocyte doubling time is noted, not WBC count) the paper doesn't provide any information on the patient's prognostic markers and how they changed over time with what she did. The change in the patient's WBC (due to ALC changes) is also one of the standard observed patterns with CLL, so we don't know whether or not the change was due to the EGCG. What is most interesting to me is the statement below the WBC plot; "Of note the sharp drop in 2008 and 2015, both correlate with acute infections". I've twice seen my lymphocyte counts sharply drop when I've been hospitalised with acute infections and been treated with IV antibiotics. My lymphocyte count took 18 months to return to its previous level after one of those occasions. So perhaps the strongest evidence for slowing the progression of CLL from this case study is to have acute infections?
The paper also states incorrectly that "It (CLL) affects B and T lymphocytes as well as natural killer cells, but the majority of CLL cases diagnosed are of the B-cell phenotype.", a reflection of the fact that I couldn't find any haematological, let alone CLL experience in the integrative clinic team at the time the paper was written.
You've noted how we can find out whether these interventions might help 'double-blind study', which you also do with randomisation and recording the patients' prognostic markers. Only then can you determine if there's a statistical notable difference in the rate of progression with a particular intervention, which is not likely due to favourable prognostic markers.
Finally, with respect to curcumin, the case study references this study ro.uow.edu.au/smhpapers/3271/ as supportive for its use. Unfortunately, not only did this study conclude, with my emphasis "Our study results suggest that curcumin may be beneficial in a small subset of early CLL patients due to its anti-tumour activity", the study protocol is fatally flawed, because it sets up the conditions for "Regression to the mean" likely being responsible for that small subset of early patients apparently responding to curcumin.
While many comments in this thread are about supplements, to me the exercise is FAR MORE important.
I concentrated on exercise, and while we are all different, the exercise seemed to keep my watch and wait period before treatment going for a long time. 17 years in fact.
You are correct. But it is significant that it worked with both cell lines, and not only with one. I don't think that anyone has conducted the same study (SOD present vs. SOD not present) with CLL cells.
This article doesn't address NAC effect on CLL. Moreover, I have read it tends to counter the beneficial effect of many antioxidants, by producing ROS, as I recall, while antioxidants often reduce ROS (the whole ROS issue has always confused me). I also read it's is an entirely unnatural chemical, having been artificially developed. So more like taking a medicine than a supplement (I've taken it off and on, but recently read this stuff and quit). I'll wait for more research (It is good for hangovers, I can personally vouch, tho I haven't had one in quite some time)
Thank you for sharing your doubts about NAC. I'm convinced that it could possibly be helpful for those of us who are already taking EGCG (from green tea) and/or Curcumin (from turmeric). According to a Forbes Magazine article:
'N-acetyl cysteine (NAC) is a synthetic form of cysteine, a semi-essential amino acid. When consumed, NAC breaks down into cysteine, which is metabolized to glutathione. Glutathione is a vital antioxidant for proper immune system functioning and detoxification, as well as tissue building and repair....
'“Many acute and chronic health conditions, including aging [related issues], diabetes and heart disease are associated with low glutathione levels. Because of this, glutathione supplementation is often recommended to prevent or treat diseases,” explains Kelly Johnson-Arbor, M.D., medical toxicologist and co-medical director at the National Capital Poison Center in Washington, DC. “Since oral glutathione is not absorbed well by the human body, its precursor—NAC—is often used to achieve higher glutathione levels.”'
Thanks so much, HowardR. I've been on and off with it, each time in response to a different article. From the Forbes article, who wouldn't take it! I mean, anti-aging!
My oncologist recommended that I take Glutamine. That was the only supplement he was aware of that would be a potential benefit to my CLL/SLL. My oncologist was not trained in the area of natural supplements but was aware of and recommended Glutamine.
Hello HowardR - thank you for your post about NAC and the supplement and dietary summary.
My husband has CLL and as per my recommendations follows a similar diet and supplement protocol to the one you posted except for the milk thistle and the low-dose DHEA (dehydroepiandrosterone). He also takes a high dose multivitamin, high doses of CoQ10, low dose melatonin, an adrenal support formula, a mushroom complex, zinc and quercitin. Upon diagnosis, we moved from a Mediterranean to a macrobiotic diet. Important highlights of this diet are no dairy, no wheat, no processed foods of any kind, no sugar, no alcohol (American Cancer Society, 2020), no red meat (only fish or eggs), everything is organic and we prepare lunch and dinner from scratch daily. Breakfast is only green tea. He walks 4 km per day and uses a TRX every other day.
With regards to your question about NAC, I added the same amount to his supplement protocol (1200mg per day) at the time of diagnosis. The supplier is SISU. I buy this product from Canada because Health Canada has a strict approval process for all supplements and requires that any product claims are proven. Note: the bottle says "To help relieve symptoms of chronic bronchitis", which is an important added bonus when it comes to respiratory infections (De Flora et al, 1997, as sited in Sechelt, 2022) and people with an increased risk, like those with CLL.
After only 6 weeks, my husband's entire blood profile improved. It was beyond my expectations (Please keep in mind that my husband is a very compliant client). Can these improvements be directly related to only the NAC? That is impossible to determine because between the time of diagnosis and the next blood test a combination of additions to his supplement and diet protocol were made, namely; the NAC, green tea extract, tumeric, melatonin, and mushroom complex. However, since we are getting results, all of the added supplements stay in his protocol, in particular, the NAC.
Underferth, D (2020). 7 things to know about alcohol and cancer. The University of Texas MD Anderson Cancer Center. Retrieved on July 15, 2023 from mdanderson.org/cancerwise/d...
Sechelt, M.D. (2022). NAC is back. Medcram. [Video] Youtube. Retrieved on July 15, 2023 from youtu.be/OcNshFh9VjY
Thank you for your encouraging response. It's amazing that your husband's blood tests started to improve after only 6 weeks of starting to take NAC along with other supplements!
I don't take milkthistle+broccoli extract supplements either. But I do know that broccoli-extract is included in supplement capsules because it is the most concentrated source of SLF available, and SLF (Sulforaphane) can help kill CLL cells, see: Sulforaphane Potentiates the Efficacy of Imatinib against Chronic Leukemia Cancer Stem Cells through Enhanced Abrogation of Wnt/β-Catenin Function - pubs.acs.org/doi/abs/10.102....
At this time of year, I'm getting a lot of SLF directly from the broccoli, cabbage, and kale that my wife and I grow in our gardens. After gardening season ends, I may start buying SLF supplements.
Further to the earlier feedback by Hidden , nearly all of the referenced research you've shared in this post, including the one above on the "Efficacy of Imatinib against Chronic Leukemia Cancer Stem Cells", relates to myeloid, not lymphoid leukaemias, so is not relevant to CLL. The Chronic Leukemia Cancer explored in that paper uses the KU812 basophil cell line, "isolated from the peripheral blood of a 38-year-old, Asian, male patient with chronic myelogenous leukemia (CML)", not CLL atcc.org/products/crl-2099 . (Imatinib was the first leukaemia inhibitor drug, which dramatically changed the life expectancy of those with a CML diagnosis; it's not used to treat CLL.)
I've attached a hematopoiesis diagram, illustrating the myeloid stem cell lines (to the left) and lymphoid stem cell lines (to the right). CLL arises in the B lymphocyte line to the far right. I think the reason you keep finding these papers on myeloid leukaemia research, even though CLL is the most common adult leukaemia/lymphoma, is because research cell lines like the KU812 line. are far easier to develop than those for CLL, because you need an immortal cell line that continually generates (and also stays true) for research purposes. CLL cells aren't immortal; they just undergo apoptosis at a slower rate than their replacement rate by cell division. This reference describes how 100 leukaemia research stem cell lines were derived and includes just 3 for CLL in table 2, HG-3,MEC-1 and PGA-1 ncbi.nlm.nih.gov/pmc/articl...
Your chances of finding supplements, etc., that might slow CLL progression, will be much higher if you stick to at least B - cell Non-Hodgkin's Lymphomas (NHLs), ideally the 20 or so chronic B - cell NHLs if you can't find CLL specific research. You are pretty well wasting your research time, reading papers about the 180 odd other leukaemias/lymphomas!
Neil
B,T cells are from lymphoid SC line. Myeloid SC line makes RBCs, platelets and other WBCs
You are correct! I mistakenly thought the "Chronic Leukemia" in the title was a reference to CLL. Thank you for the chart! It should help me to avoid making the same mistake again.
You are also correct that the type of leukemia makes a huge difference when it comes to SLF. One study tested SLF with CLL cells and only found a slight increase in cell death (42.3% vs. 32.4%) from high concentrations of SLF with long periods of exposure, whereas the same study found much higher levels of cell death when SLF was tested with some other types of leukemia - journals.plos.org/plosone/a...
However, at least in the study above, the direction of the effect of SLF with CLL cells was the same as the direction of the effect with CLL's cousins, so it isn't worthless to check out the literature regarding those cousins.
hi Howard. I think some of us find great comfort in researching everything about cll when we are on watch and wait, and throughout the course of CLL. The wonderful thing is that approximately one third of people with W&W don’t ever progress.
I’m a great believer in doing what makes you feel well, and with serious fatigue I tried everything, and spent a lot of money. A good integrative dr or nutritionist can be very supportive, but there are an other of people who make a lot of money out of it so be careful.
I thought I had it cracked, my CLL. Results were better every month. Then I took part in a trial looking at CLL genetics etc and they did a scan and my spleen had been growing very fast so that it was actually massive!
So it was spleen that was keeping my cells low. Shortly after, when the spleen could no longer control, my cells raised massively and I had to have treatment. At the time I felt so defeated that I thought I had been in control and that I had “cracked it”.
My advice would be, that if you want to use integrative specialists, see them to help you maintain good health so that if you ever need treatment you will be in top physical peak. Don’t see it as beating CLL because I fell off the wagon of everything healthy at first when I heard I needed treatment, because I felt a failure.
Maybe see it as keeping you fit. I have definitely found that my own little favourite supplements and diet etc make me feel better, and I notice when I don’t stick to it. For me the goal is to do things that make me feel better, which includes most of the healthy things you do. But I feel much better not seeing it as a battle anymore as I was so defeated when I first thought I had failed!
I also take 600mg of N-Acetyl - L Cysteine (NAC) which is part of my multi-vitamin; I understand that it inhibits interlukin - 6 ( IL-6). I also take curcumin and EGCG. Was diagnosised at 62 and also on watch and worry. My situation( blood work) has been stable over the past 10 years but I did start having immuoglobulin IgG infusions every 3 weeks for the past year. It looks like I will need such infusions for the rest of my life.
Hello HowardR - I found an interesting clinical case report you might like. It is not related to NAC so I will be posting it as a separate discussion today. Please let me know your thoughts because it supports the importance of dietary changes rather than supplements to combat CLL. I am including the link for you here: ncbi.nlm.nih.gov/pmc/articl...
I am grateful for your open mindedness to dietary and supplement changes for CLL and overall optimum wellness.
Great article. I have been trying to limit my red meat intake but I do love the taste of such. My wife has always stated that I might be a bit of a Cro-Magnon cave man. But with this said, I have been trying to limit such foods.
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Any harm in taking vitamin supplements?
Does anyone with CLL is taking SUPPLEMENTS like ZINC?
How long prior to Vit D & B12 test should I stop taking these supplements?
nutritional support/supplements for CLL
