I appreciate the interest in knowing more of my "back story" and my CLL "markers" history.
What bothers me is a bias toward the pharmaceutical approach to treating CLL that is characterized as the "best" approach despite failed and incompetent pharmaceutical interventions, highlighted in the incompentently implemented Mayo Clinic EGCG "trial" that FAILED to include "mixed tocopherols"Vitamin E. Please see page 162 of NATUROPATHIC ONCOLOGY.
Also, it was not correct to say Dr. Nasha Winters did not attend a "real" medical school.
My first Naturopathic doctor attended the same accredited medical school as Dr. Winters and was appointed to a five year term on the medical board that oversees Naturopathic doctors in California.
Before giving more detail about my CLL journey, members might better understand me by reading (or skimming) books that have shaped my approach to CLL which are:
THE TRUTH ABOUT THE DRUG COMPANIES - Dr. Marcia Angell
THE METABOLIC APPROACH TO CANCER - Dr. Nasha Winters
NATUROPATHIC ONCOLOGY: An Encyclopedic Guide For Patients & Physicians - Dr. Neil McKinney
HOW TO STARVE CANCER - Jane McLelland
THE LDN BOOK - Linda Elsegood
BETWEEN TWO KINGDOMS - Suleika Jaouad
THE KETO INSTANT POT COOKBOOK - Urvashi Pitre
MISTLETOE AND THE EMERGING FUTURE OF INTEGRATIVE ONCOLOGY - Dr. Nasha Winters
THE POWER OF HONEST MEDICINE - Julia Schopick
THE CASE AGAINST SUGAR - Gary Taubes
SALAD LOVE - David Bez
I highly recommend going to Amazon's KINDLE app and downloading a "sample" of the above books.
So, before sharing additional CLL "marker" info, I would like for members of this group (if you have the time) to review samples of the above books while understanding that the books THE TRUTH ABOUT THE DRUG COMPANIES and STARVING CANCER can (will?) have a profound impact on how you view pharmeceutical companies products.
Next week I am adding Low Dose Naltrexone ($106- 30 day supply) to my other PRIMARY AGENTS (i.e. EGCG). See page 424 of NATUROPATHIC ONCOLOGY for LDN info.
Hopefully, LDN will help me get to Complete Remission per the NCCN guidelines.
I will be back in a week or two.
Peace
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leftysfsl1945
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Good luck to you. I’m going to stick with the pharmaceutical choice, if by that you mean the recommendations that almost 100 % of Cll specialists worldwide recommend.
With regard to your post in response to replies to your previous post healthunlocked.com/cllsuppo... , you are recommending a range of books on cancer, not CLL specifically. There is plenty of evidence on the effectiveness of proven CLL treatments, both from nearly 1,000 clinical trials listed on clinicaltrials.gov/search?c... (which includes the phase 1 and 2 Mayo Clinic EGCG trials) and thousands of posts to this community.
With respect to "What bothers me is a bias toward the pharmaceutical approach to treating CLL that is characterized as the "best" approach despite failed and incompetent pharmaceutical interventions, highlighted in the incompentently implemented Mayo Clinic EGCG "trial" that FAILED to include "mixed tocopherols"Vitamin E. Please see page 162 of NATUROPATHIC ONCOLOGY." I don't know when edition 1 of this book was published, or whether it included mention of using vitamin E with EGCG. Edition 2 was published in 2012. The results of the phase 1 EGCG clinical trials, where dosing safety and effectiveness of EGCG were established, were reported on in August 2009. pubmed.ncbi.nlm.nih.gov/194...
I've looked for mentions of research on adding vitamin E per my previous reply "With respect to vitamin E, I'd be interested in any studies behind this recommendation; I can find positive studies regarding the effect on transaminitis with non-alcoholic fatty liver disease and rheumatic arthritis, but not cancer." Good medicine is performed by independent confirmation that a recommendation works for a specific application.
The EGCG trials were crowd funded by members of the CLL Topics/Updates, run by Chaya Venkat, a sadly recently deceased research scientist, cllsociety.org/2023/10/sad-... She was arguably one of the most knowledgeable laypersons on the topic of CLL diagnosis, management and treatment. Chris Dwyer, healthunlocked.com/user/cll... , one of the founding volunteers of this community who was also extremely knowledgeable about CLL, was a participant in these trials and reported that it didn't help his CLL. It didn't stop my progression either.
This is what Mayo Clinic says about EGCG and CLL: Chronic Lymphocytic Leukemia: Study of green tea extract inconclusive connect.mayoclinic.org/disc...
As was shared on the CLL Society article on Chaya Venkat's passing; "Most of Chaya’s time sharing CLL research and information on CLLTopics.org and later, even after PC’s passing on Updates.CLLtopics.net was just before the coming of the sea change in CLL / SLL care with the new targeted therapies. The timing for PC and many others was not good." (My emphasis.)
Chris shared years ago, that with the advent of targeted therapies, the time for EGCG 'poor man's chemotherapy' treatment of CLL had passed. Given that research was initiated around 15 years ago, I'd have to agree.
Thank you for confirming that "The Mayo Clinic EGCG trial was completed before the 4th Edition of NATUROPATHIC ONCOLOGY was published." - in fact over a decade beforehand. Accordingly, you need to edit (via 'More v' below your post), this section of your post, where you are critical of the study for not incorporating 'mixed tocopherols"Vitamin E." before the study designers would be aware of that recommendation - unless they had a time machine.
"What bothers me is a bias toward the pharmaceutical approach to treating CLL that is characterized as the "best" approach despite failed and incompetent pharmaceutical interventions, highlighted in the incompentently implemented Mayo Clinic EGCG "trial" that FAILED to include '"mixed tocopherols"Vitamin E'. Please see page 162 of NATUROPATHIC ONCOLOGY."
A good study book should include references behind recommendations, so again, are you able to advise whether Dr McKinney provided a reference behind his recommendation for using "mixed tocopherols"Vitamin E' with EGCG to protect against liver damage? I haven't been able to find one with respect to cancer treatment.
I wonder why you are moved to make this moderately hostile-sounding post when asked to add background to your profile.
It's sad that you didn't get seen by a doctor experienced in CLL, who made statements contrary to international consensus of how this disease is generally successfully managed. You were given some incorrect information. But it seems to me you are extrapolating this one experience into "all these doctors are bad." We've all had less-than-optimal interactions & experiences with health care providers. And we've had some good ones. Please don't come here & try to invalidate the positive experiences & outcomes a number of people have had.
I would imagine not all naturopaths follow the professional guidelines, similar to how not all Western medicine docs do "the correct thing", for whatever reasons. Sorry you got a crappy doc who couldn't be bothered to read up on the current CLL recommendations. You aren't unique, it's happened to others too. Please try not to let it affect you too much.
The only requirement *this* forum has, is that evidence based statements and links be used when stating something is a *fact*. When one is stating an opinion, that needs to be clear. Thus, you need to supply valid links to the data supporting your statement "What bothers me is a bias toward the pharmaceutical approach to treating CLL that is characterized as the "best" approach despite failed and incompetent pharmaceutical interventions". You need to support this statement, or retract/amend it as an opinion. Or consider removing it; it's pretty offensive to those of us it (pharmaceuticals) happens to work. Would you want anyone to decry something that is working for you?
The true naturopath looks at & discusses ALL the options, they don't sneer at things they may not personally recommend or choose to do. They discuss the pharmaceutical as well as other options. You sound to me like you are sneering at people who make different choices than you.
Just because people here choose to discuss diet, and exercise, and supplements, and prescription medications, doesn't equate to dismissing any potential other types of supportive therapy. If no one is doing it/talking about it, it won't be found, y'know. And it doesn't automatically equate to a rejection of concepts that haven't yet been discussed.
You catch more flies with honey than vinegar. If this is an attempt to get people to think more about naturopathic treatments, and how they may help a particular person, taking a hostile antagonistic stance is not going to inspire many to pay attention to your posts. IMO.
P.S. What was the intent of the commenting/complaining about the Wiki page regarding Dr.Winters? Shouldn't you be taking that up with Wiki? No one here said she didn't attend a real medical school, Wiki did. I don't know why you would interject something like this, it seems pretty random.
You will find it hard to convince those on this site who have experienced success due to the FDA approved drugs. Many CLL patients on this site have seen and experienced what FDA approved medicines like Acalabrutinib. Imbruvica and Venetoclax have done in a matter of two to four weeks in numerous cases.
Also, CLL hits generally the elderly so many of us have seen or personally used the natural path route when there was no other hope and are grateful for modern medicine available today.
I actually read some of the books on your list, a bit of confused because some of these writers actually have used conventional medications to fight their cancers. Also, the cook books confuse me. We all know that eating healthy unprocessed foods is good for us, no one will fight you on that. Am I convinced keto is the way to go, not for me with a diminished kidney function but if it works for you, go for it. Same goes for The case against sugar, again no one will deny that the over consumption of sugar is a good thing. If this works for you, why not share your story in more details and actual proof of it.
I could barely open my mouth since a lymph node was blocking my jaw before treatment. Within a week my nodes melted away and I’m now in remission after a year of treatment. I would be dead if I didn’t have a big pharma intervention. I probably waited too long to treat but I was getting over a surgery and practicing walking in physical therapy.
Many of us can understand contempt with how big pharma has become a monster. Many of the scientists within the companies would likely agree with you on some points. But, ultimately this is the system we have right now and until people try to make systemic changes we have to cope.
Remember drugs made by pharmaceutical companies are from nature or based on natural compounds. I think if anything can be synthesized it is natural since it can exist. This is probably better than looting plants and animals from their natural habitat because they naturally produce the substance. I think this is more evil since you have to kill things.
At present, after a nasty 'victim' blaming comment in one of your earlier posts, my perception is that you're not a CLL patient at all, but here for some other agenda. As such, I treat your words as so much unwelcome noise and distraction.
You are not the first one to come to the forum with this mindset. I pretty much have the same one. Problem is nobody found the holy Grail so far. I certainly am still looking for it. If you blaze the trail I'll be right on your heels. 🙂 So are you doing keto? Filling up your bio would likely have taken less time than writing this post🙂. Check out mine. We do what we can and when the time comes, we undergo standard therapy. When there's no more wiggling room, we stop wiggling 😄.But until that time, we don't (stop wiggling)!
The problem with the authors you've listed is that their agenda is the same as the pharmaceutical industry's: they want your money.
Also, you are conflating information on treating CLL with information on dieting. Again, the diet industry is just as profit focused as the pharmaceutical industry. So, it's up to each of us to our due diligence before selecting or endorsing any treatment options.
This is also the reason why it's important to share your medical background. Each person responds differently to treatment, there is no one size fits all cure and its possible that natural remedies are the only option for some.
Indignation won't give anyone confidence that your protocol is reliable. Unfortunately, seeing is believing when it comes to our health, so unless you can link to relevant sources, it's irresponsible to advocate in favour of abandoning western medicine when you have no alternative.
The books you've listed are generic advice on living well. They don't really help after you've already developed a cancer that is growing uncontrollably. After my husband entered remission and even during jis treatment, I did incorporate dietary supplements which seemed to improve jis outcome. But prior to taking him to the hospital, the supplements I was giving him only slightly held back the flood gates and potentially exacerbated his condition.
Clinical evidence is important, even if you are just receiving regular blood tests and biopsies while employing your own regiment (which you are fully entitled to do as an autonomous person).
I'd be interested in hearing more about what you are specifically doing and seeing your progress beginning to end in contrast to your clinical markers, if your protocol has yielded positive results.
But I hope you are not burying your head in the sand out of fear or after bad experiences with Western medicine. I've definitely become disillusioned with Western medicine myself, but if you are able to reframe your expectations, modern medicine can be helpful.
Also, life is way too short and miserable to cut out eating sugar. I have fond memories of chomping on sugar canes with my siblings as a kid. The key is moderation.
hi lefty. A lot of us start off thinking we have “cracked it” with the research we have personally done into things like keto, plant based, etc. and the effort we have taken to do things “right”!
then comes the disappointment for the 60% of us who advance, that all of the things we did didn’t stop it (I was gutted!) The other 30% can persuade themselves that whatever they did worked. We are all different.
My understanding is that lymphoma/leukaemia is one of the only cancers that can thrive on ketone bodies - very different to some solid tumours.
I am very grateful that because of incredible research, that V and O has sent me into clinical remission. My relatives in the last generation had to take normal chemo, or weren’t given the chance.
After reading his "cancer victim" admonishment of us all, I failed to read much more..What we see is someone inexpertly advised - 30,000 count is no reason to treat in itself, the night sweats may show stronger basis..
The EGCG + LDN + vit E approach seems most unlikely to achieve long term outcome, even if they help considerably short-term .. but many of us have gotten optimistically if naively (statistics + trials don't show the same optimism in 'natiral remedies' for CLL) hopeful with this or that - indeed, maintaining an optimistic attitude is likely for the best.
Another common aspect of us all as early uor naive, pre-treatment, patients, is lack of familiarity with how the science is quite established over many decades, and how our blood counts and CLL markers help others to guide us of our health prospects, for better or possibly worse.. moreorless; we take time to become more sanguine of the science and numbers being well characterised and understood.
I'm not getting involved in any discussion or debate of pharmacology v natural etc., you can have your views or opinions but please understand that my cancer is not the same as yours, yours is not the same as everyone else's. CLL/SLL is essentially a cancer of the immune system and NO one or discipline has yet cracked the code to it.
What works for you is not guaranteed to work for me or others. For a proportion of CLL'ers, I believe it's as much as a third will never need treatment & there are cases of spontaneous disappearance.
Each of us has to decide what is the right course for ourselves. Healthy debate has a useful role in this and the need to educate ourselves about this disease. There is a but ...
There is a big difference between laying out available options & evidence and people making up their own mind, versus having opinions forced on others because either side needs to 'prove' they're right. Past experience has shown that this leads to angry debate and disagreements, which is not helpful or healthy.
Adults can agree to disagree without animosity.
There are many people on here that have different experiences & are at very different stages. I know when I was diagnosed, I was scared and looking for answers and in need of reassurance. This group is a great resource for that.
All that is asked is that each of us remain respectful of the differences both in terms of individual needs and the need for unbiased information to ensure this group remains the support that many of us need.
I SUSPECT leftysfsl1945 is NOT A CLL patient as others have observed here - this post sounds like a troll Sushibruno AussieNeil Skyshark - checked out the bio healthunlocked.com/user/lef... his/her posts and responses are not adding up
I think you should try whatever you think will help you. I have tried tens of different natural remedies without any succuss, so I did not hesitate to do chemo which gave me almost 4 years of remission. If I had tried something that would have reduced my night sweats, I would have tried that as well, even though night sweats were the least of my CLL problems. Chemo solved my night sweats as well as put me in remission. Blessings.
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