In replying to LeoPa's recent post, which began " Some members seem to be irritated by my nutrition intervention and lifestyle related comments", my views on the acceptability of what members choose to post or reply to posts empasise the importance of how content is presented healthunlocked.com/cllsuppo...
A simple example of what I had in mind: "I drink green tea daily and feel better for it" is very different from "Drinking green tea slows disease progression". In principle, and as far as I'm concerned, you can replace "I drink green tea" with "I wrestle my pet anaconda". I'm neither offended nor enticed into following suit.
But here's the rub. A post can be written in a way that blurs the distinction between "what I believe works for me" and "what works for all". The disclaimer is rarely in evidence. The reader may be fooled.
My liberal interpretation of free speech was in response to LeoPa, and was there as a preface to saying what does irritate me (people posting pseudo-scientific theories and pitching them as universal truths). I certainly did not intend to challenge community guidelines, which I urge everyone to respect healthunlocked.com/cllsuppo...
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bennevisplace
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In the relatively new world of “Google”, we have access to many sources of information on health, diet and disease. It is not always easy to recognize when online information is not reliable. This can be especially true if we are looking for a magic cure or to explain how our version of CLL disease presented itself and changed over time.
While I think most mean well by posting information, it can have the opposite effect. Some of us have CLL that progressed to the point of needing treatment. Others may never need treatment or their CLL is seemingly progressing slowly.
When giving advice, it may be useful to take care in how the advice is given. Try to think about how others might feel who are in a different stage of CLL, were just diagnosed, have other health issues, or have already had treatment and facing another treatment regimen.
Last fall, without medical intervention, I was going to die from CLL. I was losing weight, had little appetite, felt fatigue and needed help taking care of myself. Since I started treatment, my absolute lymphocyte count plummeted from 269,000 to 20,000 in 16 weeks. I feel great today and I credit this to the medication (Pirtobrutinib) that I am taking.
When we say that we are unlikely to die from CLL, this is not because CLL is a benign disease. It is because there are treatments available to us, in part because people before us participated in research.
I don’t want to read that all I need to do is exercise and my CLL won’t progress. I don’t want to read that olive oil or green tea will cure me.
If you are interested in a study that you think shows olive oil or green tea or alligator hearts cures CLL, it is fine to post a link to a study and ask those on this forum who can read studies to assess their relevance, understand the study design, and assess the results.
But don’t just post a link and assume that because some organization somewhere was interested in the benefits alligator hearts might provide to some people, that alligator hearts do provide benefit to people with CLL.
Clarification: I have never seen any study about alligator hearts.
Some studies are not relevant to CLL; some are poorly designed. Some don’t actually find any benefit.
If something is helping you, it is fine to post that this particular aspect of your health care is helping you. But even if it helps you, it may not be an answer for others.
Well said Patti. I really find this forum the most helpful and scientifically useful forum of all that I am a member of.
I am Australian and I find the CLL Support Group in Australia very quiet, Australian's don't tend to talk about their health much, but then I find the CLL Support Group in America (FB) way, way too overloaded with people's private health woes - to be honest when I was first diagnosed it both confused me and scared the hell out of me - the 'watch and weight' bandwagon is very heavily pushed in the USA (I suspect because the health system can't afford to treat so many thousands of people in such a large population) so they talk as though treatment is the absolute 'enemy' and for many like myself - for whom it's the only answer, you really can feel disappointed and a 'failure' when that time comes.
Aside from that, I can totally respect those who work very hard on their personal health and wellness goals and strive to eat well, exercise etc - but it's all personal choice, lifestyle and ability to spend a heap of time on self care etc is based around so many variables and this illness is also such an individual one. I wish I had a mutated status and had been able to enjoy decades without intervention - but it wasn't to be and I felt dreadful before O&V treatment which I have found has given me hope, and (I hope) time. I'm grateful for modern medicine and the Doctors who have pioneered and advocated for these treatments.
In saying all that, I've never been offended by any posts on this forum though.
I would just like to point out that the CLL Support group on Facebook is not the same as the CLL Support Groups sponsored by the CLL Society in the USA.
The US is one of the more liberal when it comes to pharmaceutical treatments. I went quickly into treatment with a three drug BTK/BCL2/CD20 regime of my own accord. Something rarely if ever done outside of the US. The primary reason for delaying treatment per my specialists is one of clonal evolution. There is only so much mileage to be had from current BTK and BCL2 based treatments and they tend to push the disease into a more aggressive state. This is especially true for BTK based therapies and the prognosis for folks like myself who have had this happen is pretty poor. I am in a much worse place now than if I had remained in W&W. It’s all about balancing risk. I consider O&V a great first line treatment BTW and wish you success.
Wow, flipperj. I don't agree with one of your main points. But don't find it in the least offensive 😊. I enjoy posters strong opinions. About the BKT therapies: in my case Ibrutinib for over 2 yrs and then Acalabrutinib for a year worked super well for me and I've been off Acalabrutinib for over a year and a half now, with no other treatment because it ulcerated my stomach. IB raised my blood pressure and caused awful AFib along with periods of rashes and joint pains.. AFib slowly Began abating when I stopped taking IB and started Acalabrutinib which did not cause much of the headache we are warned about but awful nausea until dose reduced. But it's only now I clearly know after more than a year, on no treatment, that Afib from IB is really departing. All horrible, but I immediately felt stronger when starting the BTK treatments in Jan 2017 and grateful.
However my point is that at no time has it seemed that these treatments might push my CLL into a more aggressive stage. My consultant who is experienced with IB and ACALA, running BTK trials in the UK, reduced me to half doses in both cases early in treatment and my bloods did not show any negative changes. A year after coming off treatment my relevant markers did not rise and recently began a gentle rise. I'll see my CLL specialist in August and we'll see then. Zanabruitib is his choice of med for me going forward at this stage.
So I don't agree with your statement " they tend to push the disease into a more aggressive state". What I worried about is that I've been through some mega stress in past couple years and this must have affected my immune system. I fear August's checkup though feeling fine.
Anyway, wanted others to be cautious about accepting your comment on BTKs as a fact. By the way, I am umutated and have Tisomy 12. I saw a link somewhere, to umutated patients particular success in treatment with BTKs. We all know that unmutated ones do better on BTKs than on chemo. But this paper suggested more than that and I wonder if anyone here knows anything about this????
Unfortunately treatment induced evolution is a reality we are faced with, not an opinion. As my specialist said, you are only treatment naive once. From there, things tend to get more difficult. This is especially relevant for those of us in the 25 percent whose disease has transformed as a result of treatment with BTK therapies.
I am sorry to just learn that your CLL transformed as a result of BTK therapy, flipperj. I did not know this had happened to you. I think this can happen with Chemo too? I don't know as much as you do with your experience. I hope you understand that I was not saying that transformation was not a risk, simply that it did not happen to all on BTK therapy.
I now see you were clearly saying " Do not rush into treatment before it's necessary". And this warning is very worthwhile as I've read posts here from people actually wanting to start therapy very early in their CLL experience. So thank you for your post.
I wish you everything good. Take as much care of yourself as is possible. Best wishes and comfort to you. My thoughts go with you.
Flipperj, you are technically incorrect in ascribing transformation to the use of BTKi therapies. All treatments for CLL select for resistant sub-clones, but to a lesser extent, these also arise by chance over time, which is why testing for 17p del and TP53 is recommended prior to starting treatment. cllsociety.org/newly-diagno... Certainly, we tend to get our longest remission after our first treatment, which is one of the arguments for watch and wait vs early treatment.
With respect to CLL, the word transformation is reserved to meaning Richter's Transformation, where CLL transforms to an aggressive lymphoma, usually DLDBC or less commonly Hodgkin's Lymphoma. pubmed.ncbi.nlm.nih.gov/346... The use of doublet or triplet therapy is theoretically considered to reduce the risk of drug resistance occurring, as a sub-clone would need to become concurrently resistant to more than one drug. That's being borne out by the observation that combination therapies can be repeated. Are you are aware of evidence for BTKi drugs significantly increasing the incidence of Richter's Transformation, particularly to the extent of 25% of those using BTKi therapies? I thought the drivers for that lay more with less stable CLL, specifically complex karyotype, particularly when Notch-1 mutation is present. If you are referring to CLL sub-clone resistance developing over time to BTKi maintenance therapy, that's indeed a concern but the same phenomenon happens and more so with BCL-2 therapy.
Thank you for your response. I am open to alternative health, but always check with my oncology specialists. I stopped going to my local health store because the owner said if I take CBD it will cure my leukemia. I asked him for a clinical study, and he was not able to provide me the information. Personally, I just try and eat healthy, drink green tea, stay away from toxic people, and try not to sweat the small stuff.
"what does irritate me (people posting pseudo-scientific theories and pitching them as universal truths)"
Hearty agreement!
I really value this place for the CLL related content and as a support network, not pseudo "universal truths". I've limited my own participation because of it. No interest in engaging in what devolves into bickering. Y'all have fun with that!
I believe Nutritional Interventions & Healthy Lifestyle Changes should always be your first line of healing your body. Let your food be your medicine is a famous saying for a reason too. I believe in the Wholistic Approach, which actually I was taught in my CSI RN program. Take care of your mind, body & spirit. So much fake & processed foods that harm the body & mind. So many autoimmunity & leaky gut syndromes. It just beehoves us all to make healthier choices & especially since we have this incurable disease in my opinion. CLL is quite a condition to deal with & manage properly so I don’t want to add more to the present problem. Exercise is a privilege that I can not indulge in at the moment. This second BTKI both affect my muscles, Zanubrutinib affected my heart (chestpain after 60min on a stationary bike) & now 1/2 dose Acalabrutinib has all my muscles feeling worked out upon waking up each morning. I can only dance on my Vibration Plate at the moment without moving my Elliptical Arms or I will feel chest pain. I think I have found the best recipe. Dr Starr said that since I didn’t need treatment for 13yrs 8mos that it is probably indolent & needs just a little help.
Hgb 10.8->11.1, Plts 76->94, WBC 81->61 things are moving in the right direction🙏🏾
You said it: CLL is quite a condition to deal with. Because it disrupts a fundamental part of our being, the immune system, with a whole range of knock-on consequences for our health.
However well conditioned we are - by eating right and keeping body and mind in shape - we can't escape our inherited DNA, or that of our errant B-lymphocytes, and those genetic factors will play a big part in how our disease plays out. Which doesn't mean that maintaining fitness through diet and exercise isn't important. It is, and I believe that in a few marginal cases it's the difference between life and death in CLL. Not to mention Covid19.
Coach, now that you have an oncologist you're happy with, who's confident you're on the right dose of the right med, you're on the right track. I read that Acalabrutinib side effects tend to abate after a month or two, and hopefully that will be your experience.
I eat healthy foods because I know it has the potential to reduce my risk of developing disease. Sure it is true that CLL will develop in people who exercise well, watch what they eat, take care of their bodies, we also know CLL is more prevalent as you get older, the prevalence of monoclonal b cell population is very high if you took an average 70 year old, so why is that? Well we know chromosomes have telomere shortening with age, how can that be modified, how can oxidative stress be modified, clearly once the chromosome have become monoclonal, not much can be done except rely on the research scientist, but we also know disease can progress, sometimes that is just what it is, but we also have known transformation, such as prolymphocytic, or large cell lymphoma, so is it futile to modify your life to try to prevent that, or is that just a card we are dealt. I am a research scientist and I'm interested in these things because it's in my blood. So I will sprout my chick peas, I will eat foods with enhanced isoflavones and antioxidants, not because I've got studies behind me specifically with CLL. For example Asiatics rarely develop CLL. Why is that. Could that be their diet is not western? Possibly. Can I prove that right now? No I can't. But can I provide my cells with molecules that may prevent my disease from getting worse, such as mantle cell going blastic? Maybe that's too much to ask from dietary and lifestyle. It could be like stopping smoking after you've got lung cancer. But we do know after a certain number of years of quitting, our risk keeps getting smaller, until we reach the general population risk. So we are correct in asking someone to desist in making baseless claims, which frankly can be hurtful. But for me now knowing I might actually have mantle cell and not CLL, and I'm maybe one chromosome break from going blastic, also even if I've got indolent CLL, should I not use that as incentive to eat as healthy as possible to prevent disease when I know that dietary modification can help my outlook, well obviously I should. Doesn't mean I can't have occasional pizza, but for me, as a researcher, and who studies aging and the pathology of aging, as a required subject that I have to pass an exam on, then I'm in a position to critique such a post, and even post my own knowledge, which is fact based, but with the proviso it is speculative whether diet or exercise, can modify the outcome, but my view is there are very few things we as patients can do, looking after our general health, is essential, we can also know there is potential to prevent disease progression, we can ask, why some people progress more quickly, others don't, those are things at the cellular and chromosome level, and I know I can at least shift the odds, and even a slight shift to the odds, I'll go for that. But I disagree with deluding people that they can completely change the odds. Because I know that is a false statement, so I will continue to eat a natural plant based diet, with enhanced isoflavones, with probiotic enhancement, knowing at minimum I improve my general health, improve my chronic back pain, prevent type 2 diabetes, and maybe even shift my odds, right now I've got three malignant clones. One is small monoclonal pre b CLL. One is uncharacterized t cell. But the main one is b cell possibly marginal zone possibly mantle cell. I'm preclinical, and I'd like to keep it that way. So I work on my attitude and mental health, I also make dietary modification that I do know as a research scientist, makes a difference at the cellular level. What I do takes effort, and likely won't do much to advanced disease, that's why research scientists work late hours for breakthrough drugs. Other research scientists, also work late hours, to study diet, and I follow that evidence based research literature. And implement it. In my own kitchen. It's not that hard, it takes discipline though. And at least I know, I've done my part, and if ...luck...deals me something different, well that is for the oncologist, for my attitude, and for my mental state of acceptance.
There's much in your reply to ponder. Thanks for your contribution.
One observation, a thought that's struck me many times before, is how many people I know, or know of, who work in the field of biological/ medical research/ drug development, with science backgrounds, who use diet and food supplements to treat ailments, as well as alternative and complementary medicine, in preference to mainstream medicine and pharmaceuticals. BTW I'm not saying you belong in this group.
I'd be interested to hear about your research into the pathology of aging. Can I send you a PM?
sure of course you may, there are tons of papers on enhancement of isoflavones, and there are also research papers on animal studies, we also have population studies, but i follow mainly isoflavones and polyphenols, since that is that I have practical access to. My "research lab" is my own kitchen. Although the professor at the university is very interested in publishing, she needs a keen graduate student who can work late, and take it on. so far no one has taken it on. I don't have access to HPLC, I've tried different avenues, but the all end at dead end. But at least I know basic science, basic pathology, and I read the isoflavone and polyphenol literature.
Thank you for elucidating the conclusion I came to years ago, after nearly a decade of research into CLL, which resulted in me posting this two part explanation of why CLL is considered incurable over 5 years ago.
What's the likelihood of influencing CLL by dietary changes?
I agree the low chances of success shouldn't stop us from trying to slow or even reverse progression, but let's also be realistic and put our efforts where they are most likely to be productive. We will still benefit from our better health enabling our bodies to better fight infection and have an improved and likely much longer life expectancy, given infections are a major cause of our reduced life expectancy.
You are dealing with the challenge of an uncertain diagnosis and I hope your efforts can keep whatever it is preclinical.
Thanks for your response Object. I have also spent a career as healthcare researcher and follow the same approach for similar reasons. I appreciate and understand that there are nutritional factors which play a key role in the maintenance of genomic stability and aberrations are not necessarily happenstance. When I was diagnosed I had some pretty severe nutrient deficiencies due to CLL infiltrating my GI tract and these were completely ignored by my specialists. This was highly frustrating and disappointing but fortunately I learned where to go outside the system to obtain proper care. For me personally, the primary path to overcoming any chronic health problem is with a fundamental approach which supports the body’s innate ability to regain balance. This is not as easy as it sounds in an era of industrialized food supplies, hence the reason many supplement. Pharmaceutical interventions to me are a distant second as I have learned from my many mistakes in the past. This is in spite of a career working in the field. I realize my approach to healthcare is contrary to the way industrialized healthcare systems function but it is also one that is shared by many of my colleagues. I can’t tell you how many healthcare providers I have known who have chosen an alternate course than that which their profession dictates when faced with their own health situations. Just the other week, my CLL specialist shared his severe rheumatological issue with me, as well as his dismissal of mainstream rheumatology. He described the profound improvement he experienced incorporating an unusual dietary approach aimed at reducing a specific gut bacteria know to be associated with autoimmunity. An approach which has been ridiculed as unscientific in mainstream practice. Prior to this I considered him to be one of the more intelligent healthcare providers I have come across and I still do
I just skip the talk about nutrition and miracle cures or diets. I don't believe for me or my Dad - we both have CLL, that diet makes a difference. My hematologist agrees. My Dad lived to 94...ate crap- never needed treatment. I don't eat great either...I just enjoy & try moderation. I don't put down those that disagree. I feel wonderful. Had 12 years of W&W. 3 short chemo cycles. 5 years remission. I eat red meat 6 days a week. Love fast food too. It didn't effect my Dad nor I. It may effect others. My uncle who did not have CLL but many other diseases, lived a full life till 101 years old . He ate a horrible diet.... again, I don't suggest anyone follow that.
So I don't judge & I skip reading whatever doesn't suit me.
The cell relies on high energy electrons. These come from the mitochondria. The process is not perfect, oxygen singlets, O3, and H2O2 also come out, and play havoc. The cell has glutathione which quenches these oxidants. That is not always perfect. Chromosome may be damaged, and during replication, there are 4 times the mitosis has a gap, where the cell inspects the integrity of the chromosome, and will attempt repair. It may or may not succeed. If finally there is no success, it used bak and bax to induce cell death. Sometimes that fails, and so now you have an immoral monoclonal neoplastic cell. The body may still recognize it as abnormal and attempt to kill it, but the cell keeps replicating until it eludes all attemps by the body to eradicate it. Thats it in a nutshell. Molecules P16 and P53 are involved in this process. That's just how it works. All I can do is use myself as a subject in my own clinical trial of one person, and since I am using myself as a subject, I don't have to go through ethics committee. What I'm doing is not a cure and is not a substitute for your oncologist. It is an adjuvant, but it does have promise, and there is basic science peer reviewed literature that I follow, this is not a fad, and I'm not selling supplements, no one makes any money out of what I'm doing.
And what I'm doing will even save you money on your food bill, vegetarian sprouting is very cheap. Part of the challenge is finding chick peas that have not been sprayed with roundup, since roundup will inhibit sprouting. I buy from several sources until I find a source that sprouts well. You also need a meat grinder, and I've got a pretty vintage stove with oven that keeps things at aroung 100F, so I can the use enzymes in probiotic organisms to modify the isoflavone so that it can be readily absorbed, in other words the aglycone form.
Slightly off topic, but thank you Object. Comforting to know that I am not the only one that tests their hypothesis in a one subject clinical trial. Sadly, the last one felt like I’d fallen into a test tube with no off switch on the centrifuge!
On the topic of clonal hematopoiesis, as I understand it, it’s possible to have a dominant malignant cell line and a coexisting sub clone, as opposed to mutating into a more aggressive type. It’s rare or maybe less rare than undetected, but I am wondering if the presence of a sub clone in the protective micro environment of the lymph node can change or moderate the manifestation of the dominant clone or vice versa. That could potentially change not just the choice of treatment but introduce an optimal time to treat. 🤷🏼♀️ That seems to be a hypothetical question currently due to ethical considerations.
Well thank you for reading Sir. My hematologist took it to mean I was questioning my diagnosis. I wasn’t, but my lymph nodes & bloods haven’t got their story straight yet & it’s causing havoc in other areas. I have a sign at work that says: ‘I may look like I’m doing nothing but I’m very busy at the cellular level’, she doesn’t share my warped sense of humour. Lynn
I probably have three clones, one is the usual indolent b cell, another seems to be likely t cell, I just got off the phone with hematology pathology, my main diagnosis is lymphoplasmacytic lymphoma, which is what I did not want, it is supposed to be indolent, of course I looked at my peripheral blood and it looks like that, and at least it's picked up prior to complications, which are not pretty, including stroke and vision loss, it looks like I might be getting chemotherapy sooner rather than later. / Paul
I’m sorry that you’ve joined the club that no one wants to join. That’s a lot to process and it can take a long time to come to terms with, so be kind to you. I think one of the crueller aspects of this disease is learning to accept living with the unknown, it can mess with you emotionally & psychologically even when everything else in life is stable.
I was irrationally angry at being diagnosed with a cancer of the immune system during the pandemic. When I asked what it meant for me, the universal answer from doctors was we don’t know.
At such an early stage this probably won’t help right now & you may even reject, but Lymphoplasmacytic lymphoma, also known as Waldenstromm Macrogloblobulinema is considered slow growing or indolent, as you are preclinical it could be years before you need treatment. My understanding is it’s not guaranteed that it will progress. That could explain why your hematologist put you on annual W&W, which is the standard protocol for indolent, stable, asymptomatic disease. In addition, clinical trials are running on BTK’s in WM, if or by the time you need treatment they could approved as a first line option for the treatment naive, meaning no chemo.
A real challenge of living with uncertainty & the unknown is that the brain has a tendency to fill in the blanks with the worst possible outcomes. If someone is already dealing with anxiety and/or depression it can ramp that up 10fold, that’s why finding a good therapist can really help while we adjust to a new, scary reality.
I've been working with therapist for 4+ yrs now, as if to anticipate. All kinds of really good therapists are also coming out of the woodwork. I use jack Kornfield healing temple.
Unfortunately, as Stan Brock, a famous wrestler of anacondas knows, there are many millions of people in the United States, where I live, who cannot afford many things, including adequate health care, much less, a life course of the new CLL drugs.
NIH scientific studies of the anti-cancer properties of green tea abound. Poke fun if you like, but I am personally glad that there are some remedies which I personally have found to be efficacious that can be afforded by my fellow Americans.
I've been investigating suggestions made regarding possible interventions to slow CLL progression and restore immunity for over 14 years. I've collected the findings from my investigations in replies to this post:
Sadly, there are many scammers that offer false hope. It's easily possible to blow more money on IV infusions and other useless recommendations for curing cancer, some of which, like Gerson Therapy, have been around for nearly a century, others going back centuries or even millennia, than what it can cost you in the US to have FDA approved treatments. It's far more possible to access trial drugs that are anticipated to be at least as good as approved drugs in the US than anywhere else in the world. (It is unethical to offer a placebo arm for cancer treatment if treatment is considered necessary by recognised disease management guidelines.)
Answers regarding affordable access to proven effective treatment drugs for CLL for those with low incomes in the US can be found in this forum. Yes, these access programs are under intense strain, particularly since the pandemic, but other countries have it far, far worse if you want to avoid the older chemoimmunotherapy treatments.
With respect to green tea, for a long time the EGCG in green tea and the curcumin in turmeric were considered to have the best evidence for a non clinical trial FDA (or equivalent body) proven treatment for CLL, based on human in vitro (looking at what happens to human CLL cells under a microscope) testing. An Australian human clinical trial of a high absorption turmeric blend capsules on CLL patients, eliminated turmeric as a contender for significantly slowing CLL per my analysis of the trial, as I reported here: healthunlocked.com/cllsuppo...
There are plenty of previous discussions on EGCG/green tea in this community, but all we truly have to go on are the published results of the phase 1 and 2 clinical trial results from the crowd sourced Mayo Clinic phase I and II investigations into Mitsui Norin's patented pharmaceutical grade Polyphenon-E. That was done over a decade ago. The trials were not randomised, but did show promise. Unfortunately Mitsui Norin withdrew Polyphenon-E capsules from the market, so we have no long term data. The phase I trial settled on 4 grams of EGCG concentrate per day, which translates to a huge amount of green tea - up to 40 cups per day. Over the years, my observation has been that very few take anywhere near that amount of green tea if they decide to try this method of slowing their CLL. Doing so is not without risk of side effects, as transaminitis (poisoning your liver) and digestive side effects are commonly reported. The principal investigator of these studies from Mayo Clinic, Dr Neil Kay, actually advised people with CLL not to try concentrated green tea capsules "because we don't know what's in the capsules". I included a link to the Patient Power interview for many years where Dr Kay stated this, until I found that the interview had been removed from the Patient Power library.
I'm glad to hear that, because I am one of those rare persons (decreasing symptoms, still untreated after 15 years, even though unmutated and zap70 positive but 13q del and VH3 so I am anticorrelated) whom some of your references site, and I am only trying to help when I give details of what happened to work for me.
Also, it might be worth mentioning that I came to these alternative treatments because there was no treatment available for me for about the first 10 years that I had been ill. I didn't have much hope that I would survive 10 years, but I did. Now there are treatments available. However, now that I have found something that works for me that is cheap and easily available, I hope I can keep on with it for awhile more and avoid the drugs as long as possible.
You've certainly done well for someone with unmutated IGHV. By sharing your personal experience, you've given hope to other members.
About the time you were diagnosed, the use of ZAP-70 and CD38 proxy markers came out of research into trying to find replacements for the much more expensive and much harder to accurately perform IGHV mutation testing. ZAP-70 has unfortunately proven to be not that well correlated with time to first treatment and overall survival time, with CD38 having a considerably better correlation. Both can change over time, but IGHV mutation rarely does - unless the lab doing the test wasn't that experienced in doing it. That was not uncommon back 10 years ago and accreditation of standardised testing procedures have only taken off in the last 5 years or so.
One of the indisputable factors that always gives hope when we have CLL, is that it's such a heterogeneous illness and markers don't define our particular path, just the median path for those with like markers. We can always hope to be an outlier, particularly if we have a mix of markers that can indicate a wider range of possible outcomes. I contend that those that become actively involved in improving their health can beat the odds. Most people in society just drift along, not taking particular care about what they eat, or how very little exercise they are getting. Technical societies have actively worked to automate away anything that keeps us active, which includes replacing the effort involved in making meals from fresh ingredients.
Just a note: My test results should be reliable: I was studied by Kanti Rai's lab. And the Zap 70 was performed in both Dr. Rai's lab and in Dr. Kipps' lab. I have had the IGHV test performed multiple times as well.
I would be totally out of luck if I needed green tea for my health since it and EGCG supplements ended up sending me to the ER. The first time was after drinking copious amounts of green tea at a Benihana for my son’s birthday when my husband found me vomiting while asleep which could have killed me from aspirating and the next time after taking l-theanine also derived from tea husband found me again vomiting while asleep but this time unresponsive and had to call paramedics who could not revive me with normal measures and I came to about 5 hours later in the ER with no recollection of anything during those hours including being catheterized. I stay away from green tea and EGCG and never took l-theanine again. What may be a benefit for most may not be for you.
Thanks for the Stan Brock story. My anaconda wrestling example was plucked out of thin air. I should have known: if you can think it, someone in the States has done it.
I'm the last person to poke fun at the disadvantaged, or anyone apart from corrupt and hypocritical eminences of the day. I will never disparage someone's efforts to improve their health through diet or food additives. If it seems to work for you, great. I myself spent quite a lot of money on numerous daily capsules of high quality curcumin extract, over at least 10 years of watch and wait. I suspect that it may have slowed my CLL progression in the early years, but there's no real evidence. Disclaimer: I do not recommend curcumin as an effective treatment for CLL.
There are people’s post I read and others I skim and still others I never read. I hope I am discernible enough to work out either what fits my belief or what is attractive and makes sense. Having ( inadvertently 😜) muddied the point of the guidelines, I have been rebuked by admins in the past. I’m always aware of the paradox that arises between personal freedom & common good. I try and share appropriate experience - I have a unique subjective understanding of CLL that ‘can’ offer great insight or just confirm run of the mill status. 💙
my apologies if I write a wall of text, lol, there's a lot to it, and getting into molecular biology is difficult to condense, so I did go explicit, for those who are interested. I have been doing research in this area prior to my diagnosis, others have pointed out my initial mutation could have been years ago, and in any event may have not been preventable by any method. But getting a diagnosis is not an excuse to discontinue research. I got a bad case of covid-19 and I'm checking my personal diary, I've probably got long covid, with fatigue, and soI haven't been consistent with any of what I write about, possible if I had I wouldn't be on this forum, but that is impossible to answer. It certainly is known, that many cancers have been linked to carcinogen exposure and diet, so my interest is why and how to modify. It's just frustrating knowing my efforts may go no where, but not for lack of effort.
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