Big thanks to this site as I’ve found a new Haematologist recommended here with whom I am 😊
He suggested three cups of Green Tea per day so I’ve included it in my everyday life and will be very interested to see blood test results next year. I have one early morning then make up a two bag mug which then goes in Fridge and add soda water - Green Tea Cocktail.
Being back in a warmer climate I was wondering if that was the reason for excessive tiredness - I could just sit down at anytime and want a nap! I had misplaced my Vit D in Quarantine - bought a new bottle this week and after four days feel 1000% better.
Keep safe.
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YelvertonDevon
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Glad you found and are happy with your new haematologist! With respect to green tea consumption, you'd need about 10 times as many cups a day to have any worthwhile effect. The Mayo Clinic trials found that benefits from the pharmaceutical grade EGCG were dose related and settled on 4 grams per day of EGCG for their phase 2 tria. That equates to probably drinking your tea while never leaving the bathroom!
I found that boosting my low vitamin D reduced my fatigue, so hearing of your improvement was not surprising, though I suspect the quarantining experience was tiring.
😂 you are correct I don’t want to spend 24/7 in the bathroom, thanks Neil. A study was mentioned pretty sure Mayo Clinic during consultation so wondering if three cups is more anecdotal?
Interestingly coming out of Quarantine was a very strange experience (release from prison?) and getting back into life did take a while partly due to fear of Covid. And yes tiring.
I highly recommend adding curcumin supplements along with your green tea. Don't take them at the same time, though. The reason why is explained in this article: clincancerres.aacrjournals....
I've been taking 4.8 grams of EGCG one morning, then 4.8 grams of curcumin the next morning. After 2 months, my WBC is down 13%, from 19.4 to 16.9. I suppose my next test will confirm if that's a trend.
Sorry to dampen your enthusiasm, but I too found that paper convincing enough to try alternating green tea (I could only tolerate about 2 grams of EGCG per day) and turmeric. My rheumatoid arthritis certainly improved when I took turmeric and there is encouraging research that turmeric is an anti-inflammatory. I didn't notice any marked change in my CLL though, which is not surprising, as this often happens when in vivo experiments follow on from in vitro experiments such as the one you referenced.
Sure enough. I later found a report of a disappointing outcome in much more recent Australian research in 21 CLL patients, who took a turmeric supplement. The paper sounded rather promising (not surprising, given the research was supported by a manufacturer of a high absorption turmeric compound mix), but when I graphed the tabulated results from the paper, I found the results less than inspiring, even for the few CLL patients who appeared to respond. See: healthunlocked.com/cllsuppo...
The paper only reported the response to turmeric alone, not alternated with gren tea, so perhaps you might find some benefit. Per the paper and healthunlocked.com/cllsuppo... you need to monitor your absolute lymphocyte count (ALC), NOT your WBC. I expect you will find that your lymphocyte veriation is within the variation range typically observed in those 21 trial patients BEFORE they started on the turmeric. I'll be very interested in what changes you report in your ALC next blood test. Maybe alternating the green tea and turmeric will provide you with the hoped for sustained improvement!
You're right-I should have mentioned that my ALC dropped from 14.5 to 12.5. It could be just normal fluctuation, but I prefer to believe that it's actually working! As the study said, the sequential use of EGCG and then curcumin seems to make all the difference in the effectiveness of both. Thank you for your comments.
This might be interesting Neil, a recent review of formulation strategies for increasing curcumin's bioavailability, which until recently has limited its effectiveness. ncbi.nlm.nih.gov/pmc/articl...
Some years ago I was advised to dissolve the powder in oil and smear it over my body rather than ingest the capsules. A very messy affair I assure you. The fancy new formulations, though, are eyewateringly expensive.
Per the introduction in the article you referenced, "Issues which greatly limit the effectiveness and usefulness of curcumin are its low bioavailability attributed to water insolubility, and rapid metabolism to inactive metabolites". This is why very encouraging results in vitro, often aren't realised in vivo. With CLL, there is the further major challenge of overcoming stromal protection, by which CLL cells in the marrow and nodes exhibit resistance to induced apoptosis. Per this paper from 2009: ashpublications.org/blood/a...
"There is growing evidence suggesting that CLL cells are protected from conventional drugs in tissue microenvironments, such as the bone marrow and secondary lymphoid organs, with facilitation of residual disease that is drug resistant and ultimately paving the way to clonal evolution and relapses."
The paper you referenced and section 3 of this paper: sciencedirect.com/science/a... both mention a formulation designed to increase curcumin's bioavailability. That's why the paper reporting actual CLL patient experiences on this formulation is so very interesting. I derived the actual ALC responses graphically in my reply to this post: healthunlocked.com/cllsuppo...
As you can read, only 4 of the 21 patients on the trial were found to respond, which is rather disappointing. Further, I calculated that "Over the 15 months of the study, the average increase in absolute lymphocyte count for the responders was 16.1% compared to 27.7% in the non responders grouping", so sadly, curcumin seems to have only slightly slowed progression in less than 20% of the trial members. What particularly bothers me about the presentation of these ALC measurements, is that the so called responders had fairly noisy ALC readings and without a larger patient group, it's hard to know to what degree the claimed response was due to regression toward the mean in those patients: en.wikipedia.org/wiki/Regre... If you look at the ACL plots, those who were deemed responders had upward swings in their ALC counts just before starting on the trial. The average ALC of the 17 non-responding patients was flat in the 3 months before starting the trial. There is negligible difference in the respective average ALCs of the responding and non-responding groups in the -3 and +2 month averages (bottom graph). Thereafter, the average ACL of the responding group continues to be noisy. I can't see how you can derive statistically valid information from just four responders, particularly given the limitations of the trial methodology.
Neil, once again thanks for a very comprehensive reply. Though the two papers you referenced are interesting, I wasn't thinking of curcumin's anti-cancer credentials, rather its anti-inflammatory properties. Like you and possibly many of us here, I suffer from joint pain. Recently I have also had chronic headache, plus migraines 1-3 days per week. For the past year, while in the FLAIR trial, I suspended my daily intake of curcumin (Pro Curmin from Tisso) because NSAIDs are a no-no. My inflammatory symptoms have worsened over the same period. Coincidence?
I have found a GP who is willing to address the migraines: so far, just a prescription Triptan as symptoms appear with another drug (tba) as a possible prophylactic. We'll see how that goes, but really I would like to get back on curcumin, and perhaps give one of the latest bioavailable products a go. But the GP has no idea how that would play wrt post treatment platelets in the 70s (at the last count), and I would not expect my haematologist to know much more. Any ideas?
Regarding the 21 patient study in NSW, I agree the results are unconvincing. I would like to see a study of longer duration, using a better curcumin formulation. The bioavailability of the product used in above study was assayed with a hydrolysis step criticised in the review paper I referenced, so it might have been less efficacious than the PK data would imply. How valid a criticism that is I couldn't say, but NB the paper was part funded by Boston BioPharm Inc, which has patented a liposomal delivery technology for water-insoluble medications.
None at all. And actually, I recently raised both to 7.2 grams with still no issues. Don't know where you saw that recommended daily dose, but when you're dealing with cancer, 800 mg wouldn't do much of anything.
The Mayo Clinic trial settled on 4 grams per day of pharmaceutical grade EGCG for the phase 2 trial, based on phase 1 experiences. Transaminitis (basically poisoning your liver) was a common side effect. That's why I needed to drop my dose to around 2 grams per day, because I saw an alarming increase in my liver function test results, though that could have been in part due to an OTC supplement someone close to me with medical training recommended as a way to boost my immunity. I subsequently found out that that was bad advice. It took a few months for my liver to recover.
Bottom line: If you are taking high dose EGCG, it is essential to have your liver function monitored via regular blood testing. I always let my GPs and CLL specialists know. See:
This was my experience with ingesting EGCG. Tea ( not herbal tea) can be a bladder irritant for men and women. Early on in my dx, I used EGCG and curcumin working my way up to the recommended doses gradually to see how my body ( and liver, had tests) tolerated them. At 1400 mg of non caffeinated EGCG I was peeing 5-6x a night, almost hourly. Already having had lower urinary tract sxs for years from an enlarged prostate I was not able to tolerate this upsurge in sxs. I stopped EGCG and that degree of urinary frequency ceased. Disappointed, I knew in the long run poor sleep was not going to help with CLL and general health.
As all of you know taking a medicine or supplement ( especially concerning dosage) can cause troublesome side effects or worse, negatively affect another condition.
Thanks for the link. I told the oncologist I went to about the 4.8 grams, and there was no comment about it. Of course, most doctors in the U.S. know nothing about supplements or nutrition, so that doesn't surprise me.
But I think I read that the label can say each capsule contains x amount but when independently tested the amount can fluctuate a lot. And I don’t necessarily think it’s only Doctors in the US - like many professions they will study what they are interested in!
I can tell that some capsules are not as full as others with some of my supplements, but it probably doesn't make a big difference.
As for doctors, the sad thing is that very few of them seem to realize that nutrition is a huge part of preventing or treating almost any disease, possibly because they have only about 20 hours of instruction on nutrition in medical school. I would hope that most of the people on this forum are on a whole food plant-based diet, as I am, but I seriously doubt it. Their doctors have likely never said one word to them about eating healthier to reduce inflammation. That's the key to healing any disease.
Very curious about EGCG consumption. What form, quantity and brand supplements are you taking to reach 4.8 grams? Assuming you & your Doctor are monitoring possible side effects to liver.
I'm taking the Horbaach brand, which are 600 mg per capsule. The recommended dosage is 2 caps, but I take 8, so 4800 mg, or 4.8 grams. I've been taking them since reading Glenn Sabin's book, just before being officially diagnosed in Feb. Glenn took 4 g for a few months before he went into remission, and if you haven't read his book, he ended up being cured of his CLL 9 years ago. The oncologist who diagnosed me knows I'm taking the EGCG, among several other supplements, but didn't say anything about monitoring. She got me the test that shows I'm in no danger of my condition getting worse anytime soon, so I don't plan to go back to her for a long time, if ever. I'm ordering my own blood tests at Quest, and if I ever want to check my liver function, it would be $19 there. WBC and differential is also $19. Cheaper than the $35 co-pay to see her. I can do a lot on my own with nutrition and supplements, so why go back to her?
You remind me of myself 5 years ago when I was diagnosed with SLL. I read Glen Sabin’s book, communicated with him by email, went on a plant based diet with green tea supplements. Lost 15 lbs, 4 months in treatment now (Acalabrutinib). Changed diet to more calories, no supplements. Feel great. Gaining weight. No side effects. I never took 2 grams or more of EGCG—concerned about liver impact. Hopefully you will have better luck than me. Never relied on Doctors for nutrition advice. Learned it is very important however to have or find CLL specialist you trust. I use their advice as input to make my own decisions regarding health and treatment. Highly recommend you monitor liver which is possible side effect of high doses of EGCG (green tea). You might want to check out the institute Glen Sabin went to in Chicago that cured him. They totally rely on supplements. Good luck to you. Keep me posted on your progress, please.
Sorry that you ended up on a drug, but glad that you feel good now. I feel better than I ever have since going plant-based and adding the supplements. Glenn's book is what made me determined to heal myself. The oncologist gave me no advice except the usual "Watch and Wait". I hate that term! My version is "Watch and Fight". Even if I don't get rid of the CLL, I believe I can keep it under control until I die of something else. Thanks for your kind words!
Without the statistical evidence from a comparative clinical trial, you really can't credit any specific factor behind Glenn Sabin's remission. Glenn had his spleen removed, which was an MD Anderson recommended treatment to slow CLL progression way back when Glenn had this done. The medical case study about his remission credits his use of EGCG, for which there is phase 2 clinical trial evidence of at least short term reduction in node size and ALC count. We also know that excercise can be beneficial. Finally. Glenn is IGHV mutated, which he (misleadingly in my opinion), doesn't recognise as giving him around a 2% chance at a remission, vs a very much lower chance if you are unmutated IGHV. There have been over 10 cases of spontaneous remission documented in reputable medical papers. Only one case involved an IGHV unmutated CLL patient.
I've been looking into corrona.org, and don't feel comfortable being involved with such a company. And I think it explains your apparent shift in thinking now, compared to your earlier posts. I would like to terminate my membership, please.
Jabrant, AussieNeil has maintained a consistent position on these issues and your link with HU’s plans for future ownership has absolutely no bearing on this site’s wish to be a scientific, evidence based site.
If you wish to terminate your membership however, click on your avatar top right corner, go to settings and at the very bottom of the settings page it gives you the option to close your account. Admin cannot close your account for you.
You are welcome to leave at any time - all you need to do is go to the bottom of this page: healthunlocked.com/settings and select "I want to close my account".
I appreciate your concerns, but I can assure you that I am not aware of any shift in my thinking. I have always worked to ensure that the content shared in this community is evidence based, which can I hope be seen by looking at how I have attempted over the last 8 years to provide references to information from reputable sites when members have shared information on alternative means of treating CLL. That includes a collation of evidence based references for the many claims of alternative cures over the past 4 years in my first reply to this post: healthunlocked.com/cllsuppo...
It would be great if you can keep your CLL under control by what you are doing, but despite having good markers and staying on green tea capsules for nearly 11 years and turmeric capsules for a lot of that time, my CLL inexorably worsened, so I needed to start treatment this time last year, with dramatic results. Personally, I think that EGCG has the best evidence for any supplement, but the Mayo Clinic trials showed that it doesn't work for everyone and because the supplier of the pharmaceutical grade EGCG withdrew their support, sadly we have no long term data. We also know from the Mayo Clinic trials, that liver damage is indeed a potential concern and I personally have experienced rather alarming transaminitis: healthline.com/health/trans... I actually shared the plots of how my liver function tests peaked and slowly resolved many years ago.
With many of my fellow HU admins and affiliated charities, I will endeavour to maintain the current site standards allowing members to opt whether or not to anonymously share their health data as well as our community independence from the site owners.
Thank you for sharing your experience, Neil. Since I'm 66 now, if I can fend off progression of my CLL for 11 years, I'll be thrilled! I'm at this moment listening to a video interview with a cancer doctor saying that fighting cancer is a mind game-the people with the best attitudes have the best outcomes. I'm sorry to say that being on this forum for the short time I have has somewhat messed with my positive attitude. Still, I wish you and everyone I've interacted with here the best of luck in the future. Stay safe!
Check out Capsol-T ! I was given this recommendation by a Oncologist in Miami. I found a supplier in Atlanta for the am and pm. Along with all of the healthy supplements and diet which keeps me healthy I have avoided treatment. I am 5 years in!
I am now taking EGCG pills with breakfast and supper and curcumin at lunch. However, based upon this thread, I'm going to cut out the curcumin. Then I'll be able to drink green tea throughout the day (6 tea bags worth) without the green tea interfering with the curcumin or the curcumin interfering with the green tea.
By the way, Bennevisplace, I also suffer from migraines, however mine only occur about twice a year, not several times per week. I take a baby aspirin each day, and that seems to keep my migraines rare and mild.
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