It appears there are multiple article on this — for example, natural-homeremedies.com/bl... — which surprises me, since I've never otherwise seen anything on this from any CLL-related site or scientific publication or research paper. * Has anyone else run across this potentially valuable natural addition to our arsenal of treatments? (Clearly, pharmaceutical companies have no interest in pursuing this apparently promising avenue, nor do researchers who make substantial money working for Big Pharma, nor do doctors, who would lose valuable sources of income and junkets from Big Pharma. Just sayin'.)
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Pogee
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I think it goes to show a varied diet that's not highly processed is critical to overall health. I found this link which purports to show which of the components of the carrot juice actually contributes to apoptosis. I would add, canned carrot juice is unlikely to confer the highest amount of benefits...of course I haven't tested this, but the sterilization process in canning potentially inactivates any molecules susceptible to heat. Plus canned carrot juice tastes absolutely wretched compared to fresh, IMO haha
Just want to point out a couple of things. The authors of this paper are from the Faculty of Health and Well-Being, Sheffield Hallam University, Sheffield, UK, not from the US National Institute of Health. The data reported are all from in vitro studies, and despite the fact that the paper was published in 2011, I found no citing papers moving the studies beyond in vitro. I totally believe that carrots provide excellent nutrition, I am just skeptical that they are a valid treatment for leukemia.
* Thank you for clarifying for me where the study originated. * Also, I agree completely with your statement about in vitro studies, understanding that they may well not translate to similar in vivo results. Nonetheless, carrot juice has multiple other benefits, so why not ( if it's accessible and you can afford it)?
One plus for the study is that is specifically mentions the "lymphoid leukemia cell lines", which covers about 100 different B and T cell blood cancers, including CLL, so the results might be relevant to CLL. Many of these papers claiming potential benefits of some food, herb, etc., for leukaemia relate to myeloid leukaemia cell lines, where the cellular signalling is totally different.
On the down side, any CLL in vitro study is next to useless, because CLL cells are more fragile than normal B-lymphocytes and pretty well anything can kill them in vitro. In addition to the usual challenge of translating any positive in vitro results to in vivo, due to the difficulties of getting a high enough blood serum level of the active substance to the cancer cells, without causing problems for other cells, CLL cells in the nodes and bone marrow surround themselves with stromal cells that enable them to overcome apoptosis. Hence they usually survive in vivo testing, through survival signalling from their microenvironment. Here are a few papers that discuss this issue:
It's also instructive to see the origin of the funding supporting the study, which I haven't checked. A while back, someone referenced a study supporting the health benefits of kiwi fruit consumption as a source of I think vitamin C. When I checked the study funding, I found it was through New Zealand primary industries support. That doesn't necessarily negate such study findings, but other vitamin sources may well be less expensive.
I recall the CLL research pioneer Dr. Michael Keating saying in a video he had a patient whose wife kept him on a carrot juice regime. The patient was Orange and with large nodes. The nodes subsided when he suggested they back off.
Also, the LockYourPost Police ask you to please lock your post.
I would add to JigFettler 's comment that the conclusion of the study give no declarative statement to call carrot juice a treatment; it gives a "MAY" and "MIGHT BE". While we can't deny the value of beta carotene in our diets, finding it to be more has not been established.
Also, there many reports of people drinking daily carrot juice get an orange cast to their visage--I have a nephew who got that outcome.
Again, no denying carrots are an important part of a healthy diet.
Hi Pogee - I can’t tell you how pleased I was to put away my blender after trying carrots. Even more so carrots and beetroot! Six months on each and neither did anything for me, sadly. Actually, the carrots pushed my WBC count up more than my usual increase between doctor visits while on W&W. Still, I had to try it because the stories are so compelling. And other things too, such as green tea, some vile powder I can’t remember the name of and more things I’ve forgotten. The good news is we don’t have to rely on big pharma in order to try these natural remedies, we can do our very own clinical trial. I’m not sure the goal of Big Pharma is to keep us deliberately ill by denying us simple cures through food. I assume the cost of clinical trials are just too great to try it. But a healthy diet I am certain helps our overall health. I am sure lots of people here have had different responses and experiences to these diets.
I think our ethnic heritage plays a bit into the "optimum diet" thing too. As the continents drifted apart, and the various climates/food sources available to humans changed, those whose genetics allowed them to survive & reproduce in those conditions, with those food sources, flourished. So I don't get where some people think there is only 1 diet we all should follow, and only 1 diet that is best for everyone.
You make a good point. But NB, plate tectonics/ continental drift (CD) is much too slow to have spurred human migration. For that I guess the main driver was climate change, influenced by fundamental processes such as volcanic activity, polar wandering, and cosmic cycles and events. Climate change would have pushed humans out of areas that became too arid or too cold to support an adequate food supply.
For sure, CD did give rise to unique fauna and flora in separated land masses, and certain groups of migrating humans would therefore have adapted to a different larder. One thinks of SE Asia to northern Australia, Siberia to N America.
I agree that human adaptation to local food supply does seem to be expressed genetically. People from ethnic lineages long adapted to scarcity, or seasonal feast-and-famine, do badly health-wise when fed "too well" on a modern western diet. And most of us do better health-wise when we practice fasting - it's what we're bred to do.
Fasting is unnatural ...that's why your body is giving you hunger signals when you go too long without eating. Fasting was a necessity...cavemen would laugh if you told them we purposely fast. I would concur that not eating for up to 12 to 14 hours a day is likely beneficial...if that is what you mean by fasting.
A 14-16 hour fast is one approach, low calories for two days a week is another. This is only "unnatural" in a modern society where food is plentiful, and just because one has to make it happen doesn't mean it's not beneficial.
The proponents of intermittent fasting don't say much about exercise, but clearly it's got to be in the mix to maintain health. In an age when it's possible to do all one's hunting and gathering online, physical exercise too has become a lifestyle choice rather than integral to life itself.
I'm currently fasting for 18 hours a day and I'm finding it easy at the moment but it's only been a month. Feel better than I have done for some time. I'm trying to walk 6 mile each day with my dogs too, I've definitely got more energy.
I should have also added that the hedge apple (fruit, seed growth) is about the size of an apple. To give you an idea how great it tastes, no animals will eat hedge apples even though they are not poisonous.
I have a very open mind on the epigenetic modification of CLL expression...Many with CLL have anything but an open mind , seemingly viewing any steps taken other than Allopathic, as heresy......I first came across carrots in the very open minded book; Curing Cancer with Carrots by Ann Cameron, who by remaining cynical (and perhaps on carrots!) probably saved her life.
I was suitably impressed so sent off the links to everyone I knew with CLL... all shot it down in flames saying it was rubbish...Such is Life... I continue to eat my raw organic carrots, but not at the levels Ann Cameron suggested.
And as yet, unlike everyone else I emailed I remain the only one not to have yet required treatment...Probably just good Luck, but "my" good luck...
I personally view certain other supplements as more targeted for extending the CLL presentation to treatment interval...But again am probably in a minority of n-1 here, but couldn't care one iota! Everything I do and take has required hours of research and emails to doctors all over this planet, which is far more than most have done who rubbish any epigenetic modification of CLL as pie in the sky...
Those responding that it was rubbish were correct, because the link you referenced is to a site where the testimonials of those who subsequently die from their cancer are deleted. Hardly an unbiased source of information!
Do you happen to know how your markers compare with those with whom you shared that link? I would suggest that any difference in outcomes would be easily explainable by differences in prognostic markers, not carrot juice, etc consumption.See also:
Hi There....Out trots the Party Line....The link I gave was merely an example of where they were coming from.... I actually read the book! Luckily there is room enough in CLL if not HU, for many heterodox opinions....
I notice a stunning silence here over anything positive re alternative approaches to CLL...A therapeutic belief I hold very strongly...
Do you seriously think that epigenetic modification of CLL is "rubbish" I certainly don't. I was taught at post-grad level that Lamarckism was "rubbish" and would have failed any examination if I had said otherwise...
Nowadays it is regarded as a precursor to epigenetic observation...with everyone jumping on the bandwagon. It has its failings but then again so does Allopathy.
I was reading Hamblin's blog recently...That type of close observation of one's own CLL has all but disappeared, instead we get endless streams of trials and statistics trotted out as if they have individual significance...One only has to read the comments here to see they don't...
When I need treatment I'll be far more worried if the last 10 people with CLL on that ward died from it, than what some gloriously blinkered trial says..
I'm not referring to epigenetics, which, if you look back through past posts, will see covered objectively. I was referring to the misleading information peddled by Chris on his site, which results in unnecessary deaths in his readers, put off proven treatments because they believe Chris, not his surgeon, cured his bowel cancer.
Fair enough...I gave the link as an indicator, surely with the proliferation of "yellow journalism" one would have to be pretty daft to believe ANYTHING on the net which is not substantiated. Many contributors here have grown far bigger than believing yellow journalism about anything including Covid........It does not detract from the excellence of the book, which is one of three alternative approaches to Cancer which I recommend to anyone with an open mind.
However whilst I have your attention..Wittgenstein said "Always Look at the Assumptions" when critising anyone's dogmatic viewpoint... One error strikes me so hard here, as to be as if you have hired a plane to write it in the sky...The overarching assumption on HU, but not in Oncologists I have spoken to, is that the Genetic changes "markers" as you call them, are fixed and immutable..
I accept that " Tumour DNA sequencing is at the crux of Precision Medicine: i.e. Therapy targeted to the molecular characteristics of each patient’s disease. I shall insist on Precison Medicine when I need treatment. You recall Hamblin's views on CLL therapies then extant, no doubt.
BUT I (we) do not accept that they are fixed in stone...I look forward to you changing my mind...If anyone on HU can do it, I assume it would be you, as you have an encyclopaedic ability to trot out data worth considering. I know a chap with Richter's who reverted back to complete normality in a week.....Did his marker's change or not? You tell me...
As you know "hypermutational storm" is actually linked to DNA repair...It is theoretically possible to tweak cancer cells back to normality by protein modification using epigenetics. Research is on going I'm pleased to say in modifying to the patient's benefit the proteins that manipulate chromosomes to control gene expression.
I (we) believe "Tumour Reversion" mutated DNA expression reverting to normal is genuine, albeit rare. (It occurs naturally in c1 in 10*5....Might explain the "spontaneous" cures in CLL....If so, then CLL markers are not fixed in stone and my argument for epigenetic modification is far stronger than those who rubbish it.
I've no idea where you found evidence in this community of "the overarching assumption on...Genetic changes "markers" as you call them, are fixed and immutable." There has been quite a bit of discussion on the development of sub-clones and how this can lead to drug resistance. There are some very interesting papers which track how these originate in a process known as clonal evolution. The only marker in CLL that is recognised as rarely changing is IGHV mutation status. Given the difficulty measuring this - recognised through the implementation on an international standardisation process, I think it is fair to say that most of the reported changes in IGHV mutation are most probably due to measurement error.
I'd like to read of evidence supporting your hypothesis concerning tweaking "cancer cells back to normality by protein modification using epigenetics". Per Wikipedia, "A consensus definition of the concept of epigenetic trait as a "stably heritable phenotype resulting from changes in a chromosome without alterations in the DNA sequence" was formulated at a Cold Spring Harbor meeting in 2008,[4] although alternate definitions that include non-heritable traits are still being used."en.m.wikipedia.org/wiki/Epi...
That's a far cry from replacing deleted sections or even complete chromosome arms!
The incidence of spontaneous remission in CLL is about 1%, but I have only read of one case in over 20 reported cases where this reputedly occurred in someone with unmutated IGHV.
No problem..a good reply....I won't quote Wittgenstein's most famous quote back at you, as you clearly know what you are talking about.
However I'll continue to seek out an individual epigenetic solution, as I am convinced that here, one size does not fit all... It might be carrots (β-carotene and polyacetylenes) for her, and capers (quercetin) for me! Or it might not! It might even be behavioural...or most likely a combination.
I'm happily watching Allopathic advances in treatment become far less of the "best to be avoided at all costs" variety and believe CLL may yet become one of of the cancers to have post treatment, a parallel survival curve, or even one dipping below normal controls... in most with it. Hence my commitment to delaying treatment until my options become binary.
I'd recommend Mutations of Mortality to anyone here interested in such matters. However his later postings are NOT for the faint hearted.
As you know he was a Professor of Haematology with non-indolent CLL. fortunately for us and unfortunately for him, treatments have advanced considerably beyond the basic alternatives he was given, which many doctors at that time would and did refuse.
Professor Terry Hamblin is indeed sadly missed and his Mutations of Mortality still gets occasionally quoted here. Thankfully his family have maintained the website mutated-unmuated.blogspot.c.... I learned much about CLL from both following his blog musings, including his thoughts on clinical trials, along with his contributions to CLL support communities.
It was Professor Hamblin who discovered the importance of IGHV mutation status and he and his daughter wrote a very important paper on the profound impact of CLL on our immune systems, which is still relevant today. He did not have CLL, unfortunately succumbing to bowel cancer.
Interesting...I'll assume you are correct, but I was told in very good faith by a Consultant Haematologist that he had CLL. However I'll check back and if I remain silent, assume you are correct...Such is Life I'll look forward to the pack jumping up and down with glee...It might make them think for themselves for a change.
I showed my comments to this post to a Consultant friend, and quick as a flash she said "It's a lot easier to just accept that diet has no part to play in CLL, than accept it...One requires deep thinking the other just shallow acquiesecence..After all the doctor isn't going to do your shopping for you or cook for you!" I couldn't agree more and wish I'd said such wisdom myself.
All that ever happens here with any "outside the box" point however well reasoned is abuse....Look at the 4 likes below ...What do they like? A mistake of which Cancer someone died from...Or their inability to countenance anything but the easy route out of "Doctor knows Best" ...A pathetic example of Ad Hominum abuse. I seriously wonder why I waste my time here. Such rigidity of thinking...hardly admirable.
"Yes" Thanks I was told it in good faith...But I accept that good faith can be wrong....However "our" mistake doesn't detract from anything I said before that... "my" mistake was posting it here, where howls of comment and derision occur, yet not a dicky bird is commented upon what I said about hypermutational states being one of the most optimistic DNA phenonemon I've seen for ages ...As it implies???
...Interesting to me how many of his blog remarks apply to my views on CLL. He was a beacon of individuality in a Protocol driven world. I try oh how I try! But HU is rapidly becoming a chore to visit..Such blinkered comments and thinking. I personally believe that the longer "I" can avoid toxic therapy the better. Heresy here...
The mortality of CLL treatments and CLL itself, have never been discussed in any post I've read on HU, I got the first year figures with great difficulty and found they were anything but "Jolly Hockey Sticks"
....Two people with CLL have died from treatment in the past 3 months that I personally knew.. Both considerably younger than I, and in my opinion absolutely given the wrong treatment, even by the standards laid out on HU. The Irony is that because they died from having zero lymphocytes they were entered as "Cured" in the treating hospital and dead in the one they were admitted to with overwhelming sepsis.
Hardly what a discussion forum is about, or should be about. Out there in the real world, people with CLL are doing anything they can to stay alive, and avoid toxic chemotherapy..Many of the things they do are never mentioned here and if mentioned the posts are censored and removed.... I've examples of posts being removed here and on FaceBook CLL....Blinkered opinions and abuse, can never outrank Hard Facts. Censorship 99% on Orwellian grounds..Not good at all.
HU-CLL is fast becoming useless for anyone other than peri or post CT patients, vocal as they are. Trotting out strings of stats and data from blinkered trials has zero Individual significance and this should be highlighted...I'll stick to my supplements and behavioural modications with far more logic than many who do not. When (if?) I ever need treatment I'm sure HU will come into its own.
I’m sorry this site doesn’t meet your needs Ampleforth but perhaps you need to delve more self consciously into your approach to people and the superior manner in which you do so. It’s significant that you haven’t made any posts, only replies and you seem to enjoy ‘the cut and thrust’ of replying in the belief that we are fortunate to be exposed to your challenging, conspiratorial, questioning view of the world, it’s institutions and compliance to health treatments.
Over the years we have lost many valued members who have endured hard on their CLL journey despite every kind of traditional and holistic treatment. Clearly you haven’t delved long and hard enough into the content here. I’ve certainly not had a jaunty journey of unquestioning medical submission and am under no illusion that sometimes the cure is as brutal as the treatment. I’m now uMRD in my peripheral blood and grateful for the clinical trial that brought me to this point as I’m sure you will be should the time arise.
Derision as you describe it usually has a trigger and it seems to me that members approach your replies with cautionary self preservation because you assume superiority and await challenge. Many of us are having a hard battle compounded by an even harder lockdown. We look for shared experience, support, advice, camaraderie and most of all, kindness. You seem to want to ‘sharpen your intellectual teeth’ at every opportunity in a battle of data, dogma and controversy.
You’re quite right in observing that this indeed isn’t the place for you and I hope you find the sounding board that suits your approach and adversarial view of the world.
To paraphase...."Don't rock the boat....No one ever drowns, and for goodness sake don't suggest an alternative route...Just keep on rowing"...Great stuff for a discussion group admin...What about a discussion on Treatment Refusal
We've had quite a few patients here who have refused treatment and one who died not so long ago. One of our volunteers, CLLCanada was unable to have treatment which he documented in his profile. healthunlocked.com/user/Cll...
We try to address all the issues that concern our members with, as Newdawn says, kindness and support rather than the hectoring and mocking tone that you sadly seem to have adopted. None of us want to have treatment unless it's really necessary and if you had been a member for longer than your short time, you would have read some of those posts and the discussions.
As a recently joined member, I'm not quite sure why you are here if you genuinely feel the way you say you do about the group, unless it's to reinforce your misplaced feelings of superiority.
I have a feeling you are frightened of treatment and clinging to any other straw available. I sincerely hope your views about treatment and allopathic medicine do not trip you up if the time ever comes for you to need treatment.
Many of your responses could be interpreted as breeching the posting guidelines particularly with reference to number 8 "All members must conduct themselves, at all times with regard to all users, with respect, tact and honesty."
I post them here for you to read and your information.
Luckily I only come here once a week...What a patronising and threatening reply...I try very hard to ignore such rubbish..But feel you really need to grow up and leave the Freudian Analysis to those who understand it far better than you do...Which is just about everybody! I notice that not one of you dare comment upon the factual content of my replies, e.g. The incredible significance of the hypermutational response re dietary manipulation...But always the "pack" here, always the same mutual admiration group... sink to anecdotes or ad hominum attempts, before usually deleting the account of the person discussing alternatives to toxic Allopathy......Quite pathetic really...Does HU-CLL only exist to promote a "Take your tablets and shut up" Mantra? If it doesn't how could anyone tell the difference?
Why would you think differently? Why indeed,Think at all? What about all the censored or removed posts? Some merely discussed alternatives to Allopathy, or shock horror; Cannabis oil as a treatment for Leukaemia..I know, they have sent me private messages of support. Too scared to comment publically here ever again. One of the best posts I ever read..never commented again.
in reply to
Thanks... as Hancock once said of Sydney "An unexpected ally, but a welcome one!" If HU-CLL is ever to win back my Trust...It will have to stop censoring alternative views to " Take your tablets (however toxic) and shut up!"
- While a few of us do want to start treatment early and struggle with watch and wait, most of us gradually learn to appreciate being able to put off treatment until absolutely necessary - no heresy there! I suspect you are fearful of starting treatment and you are far from alone in that regard. Perhaps if you actually shared more about your particular journey with CLL, you might get some helpful responses from other members who have been there.
- The mortality of CLL treatments and CLL itself are discussed here - and the statistics are readily available through quoted references. I've personally recorded in my profile, my 5 week hospital stay just after I started treatment, which probably would have been avoided if I had been able to start treatment 2 months earlier, which was not possible due to delays beyond my control. If you don't think a subject has been sufficiently discussed, write a new post!
- Sepsis in CLL "occurs secondary to humoral depression by the disease and immune suppression by the treatment"ashpublications.org/blood/a... So it can happen prior to treatment and during treatment, plus if you put off treatment when it is necessary, your increasingly infiltrated bone marrow reduces your body's ability to make white blood cells to fight sepsis causing infections. Note the concluding remarks from the above reference: "Patients with relapsed disease had higher inpatient mortality when admitted to sepsis and interestingly, those with CLL in remission had lower mortality when compared to non-CLL patients." Based on this analysis, treatment improves your sepsis survival chances.
- With respect to your question about hypermutational states and DNA repair, I earlier said I'd like to read of evidence supporting your hypothesis, but you haven't supplied any.
- You haven't specified which posts were removed here and I'll admit I'm guilty of removing some lately - because they were duplicate posts! The admins very rarely remove posts and while HealthUnlocked have the right to do so for posts not meeting their guidelines, terms and conditions of use, I'm not aware of HealthUnlocked doing so for posts to our community, unless they blatantly ignore the conditions of use.
Hi There, I'll remain courteous to you despite all the abuse I'm getting. Re the data I've supplied, only you have even considered it, and I've supplied enough to sink a battleship...The rest have avoided considering the data but lapsed into "Group Abuse" aimed at me...It's alot easier to abuse than think...
Feel free to private message me for a peer to peer discussion upon epigenetic modification of CLL. Re Allopathic Therapy you obviously missed it when I said that I consider it has advanced to the point where I'd happily consider taking it...
However for goodness sake get it into your head that the fact that the now famous but historical survey re toxic NHS therapies available..showed that 100% of Oncologists said they would NOT take the chemo they were dishing out MUST mean something even here.
You presumably recall AA Gill's rather annoyed letter as he lay dying, when he realised that the private therapies available for his terminal cancer were 100 times better and 100% not available on the NHS.
I only come here once a week, so don't hold your breath for a reply..I find HU-CLL a travesty of an impartial discussion group..Alternatives are always elegantly dismissed as rubbish, usually with a parade of blinkered trial stats, not mentioning how selective most trials are as to whom they recruit..if that fails, any comments are emotionally or anecdotally dismissed, if that fails censored. Rather Pathetic we feel.
"It is now a year since I was diagnosed with cancer. In retrospect six months previously a small enlarged lymph node was detected on CT scan. It was known from colonoscopy to be situated somewhere near the junction of small and large bowel. At operation no primary tumor was found, but the lymph node was found to contain well-differentiated adenocarcinoma. I was given 9 course of chemotherapy on an intense schedule. At the end of this a residual and inoperable was 75% smaller than before the chemotherapy. Three months on the node was unchanged on CT scan and I am due another scan shortly. My CEA test gave an answer of 3 at the time of the operation, which does not indicate a large amount of cancer, but now it is <1. I have nothing to suggest that my disease has recurred.
Even though my cancer had spread at diagnosis, this clearly does not mean that it was an advanced disease. With breast cancer we know it to be a systemic disease even at an early stage of diagnosis. Bowel cancer may well be the same."
I don't recall ever saying "that diet has no part to play in CLL". We can reduce our risk for many cancers through lifestyle modifications, with dietary choices a major controllable factor. I regularly encourage members to improve their health by improving their diet and fitness. There's far more evidence for exercise than diet in improving cancer outcomes, but I don't recall you ever mentioning the importance of this.
The primary issues with CLL and diet are (1) Diet does not appear to be a contributing risk factor for the development of CLL. (2) CLL has a reputation as an incurable cancer. CLL cells are distributed throughout the body through the blood stream and most importantly CLL cells in the nodes and bone marrow are very hard to kill even with the best treatments we have devised, due to protective microenvironmental anti-apoptosis mechanisms. What's at issue is the likelihood of influencing your CLL through dietary changes, which I've posted about here:
The two primary proponents of curing cancer through diet that I mention in those two posts are making an income through their promotion of the chance of a cancer cure through diet and supplements, which I wouldn't have an issue with other than they are misleading their readers with respect to the likelihood of doing so. You've already referenced the webpage of one and I hope you noted the heavy marketing. The other proponent at least had CLL, but in personal communication, he hadn't even appreciated that he had IGHV mutated CLL, which gives him around a 2% chance of achieving a spontaneous remission. That's a fundamental issue, given some specialists consider CLL to be two different diseases; mutated and unmutated IGHV CLL and I only know of one case of spontaneous CLL remission in a patient with unmutated CLL, vs over 20 with mutated IGHV CLL. He also doesn't like the use of the phrase "spontaneous remission" because it detracts from his marketing. He also doesn't make much of the fact that he had a splenectomy to reduce his CLL tumour burden, which decades ago, used to be recommended by M D Anderson as a means of slowing CLL progression.
The fundamental challenge with claims of influencing CLL through diet are the difficulties of (1) Determining if the dietary changes made any difference, considering about 30% of the time, we never need treatment for our CLL and (2) With respect to curing CLL, separating a spontaneous remission from dietary influence. Given case studies of spontaneous remission don't tend to make mention of dietary changes made by those fortunate enough to have realised this ultimate goal of not needing treatment for their CLL, I conclude that the chances of reversing CLL through dietary changes are probably far less than 2%. Contrast that with modern treatments achieving 80 to 90% rates of long term CLL management. Given the challenges most of us have sticking to diets, taking the dietary path is not for the faint hearted. However, I have no doubt that doing the best to ensure that we are fit and healthy will improve our quality of life and should we ever need treatment, place us in good stead to do well.
Thanks, admirable as always.. ...However, it doesn't really detract one iota from my numerous points, nor change my views or behaviour re my own CLL one iota. I'm wasting my time commenting here and shall only reply to any more exhibitions of ignorance (i.e. trolling and/or abuse)
My current book at bedtime opens with the wonderful quote;
" "When a true genius appears in the world, you may know him by this sign, that the dunces are all in confederacy against him."
Unlike the author I don't consider myself a "true genius" but at least I still read books and can even formulate my own views upon CLL, rather than the far easier contrary approach.
The author committed suicide at 32 in 1969 after his Pulitzer Prize winning book was rejected outright..And I believe the apothegm originator had to endure numerous attempts to silence him in the early 1700's for saying what everyone wished to hear..But no one dared say it.
I've looked at the calibre of posts, likes and comments of those who constantly "dis" anything I say on HU, and am not remotely impressed.
I'm not remotely impressed with the post to which I'm responding, Ampleforth. Perhaps you'd like to be more positive in your posts...and your attitude. Or, as NewDawn has posted, perhaps you'd like to find a more elite group of geniuses, each of whom be willing to bow and kow-tow to your superior intellect.
Forget the abusive"Bow and kow tow" You are saying far more about yourself than many wish to know...As a simple matter of Intellect; Is asking that HU publish detailed figures on the Toxic Therapies I am trying to avoid, too much for you to grasp? I note you haven't said a dicky bird about all the back up data I supplied to back up my approach to CLL. Hardly surprising. Poor old Ann Cameron she actually survived by thinking for herself...No doubt another one of the thousands of books you've never read.
Not a mention of any reasoned and reasonable facts I threw out for discussion...Important facts obviously way beyond you...Just running with the abusive pack, rather than thinking for yourself...Hardly surprising looking at your stuff....I only ever comment on replies, yet few here can resist throwing insults in my direction..Much easier than reading what I actually said.
I'm glad you found my post annoying, better than boring like so may here..But your emotional attempt at trolling falls on deaf ears...Try elsewhere...Just what is it about Hamblin's post which I got wrong...I'll be interested to see, especially as only a fool get's it right all the time.
Be glad you have a choice. My Dad died in 1968. He was 45 and he left 2 little children. He had blood transfusions and died of pneumonia and pleurosy.He didnt have a choice. They told him he had anaemia.
We all have a life. We all have cll. Most of us have a choice. Take it or leave it.
Well said, Ampleforth. * Do your homework. * Keep an open mind. * Be your own advocate. * Experiment with your diet and habits, if you feel like it. * There are countless examples of people having been scorned for not adhering to the orthodox line at a given time and place, who have since been vindicated. Even today, we have multiple examples of WHO, the CDC's Fauci, and others giving entirely contradictory recommendations, or backtracking on prior recommendations. * Trust the experts? As Ronald Reagan once said about Russia's ICBMs, "Trust but verify." I'm with him...and you!
Hi too believe we can do a lot to help ourselves but not with CLL. How do I know? For 6 years I followed the strict routine from a highly qualified medical herbalist, read avidly Chris Beat Cancer, juiced more pomegranate, carrot and beetroot juice than I care to remember. What happened as a result of this regime? It accelerated my CLL. I do not believe I would be in treatment now if I hadn't attempted to 'improve my immune system' Some of these strategies may well work for solid cancers but CLL is different as I learnt to my cost.
I shall thanks...I think a passive "Doctor knows best" attitude in CLL can be lethal...I'm happy to explore new horizons and happy to allow others to do anything but. I've seen so many volte faces in Medicine as to be quite Cynical and of course many an anti-cancer drug began as a Natural Medicine, rubbished by all except those who took it... But of course it had to be refined to be patented...Patents +Patients = Profit!
This site has long advocated for each of us to be our own advocates with our medical providers and have support that approach as one that can be developed over time.
Here is what I learned here from the sharing and caring members of this forum:
I am one of the lucky ones who has had a CLL diagnosis for going on 21 years and no treatment.
I have had 2 Drs. I did not feel were right for me and my specific brand of CLL because of attitude in response to my questions in regard to my need for information about the tests they had run. The 3rd Dr. I went to see immediately ordered an MRI and Bone Marrow Test. When the test reports came back she said I needed to be treated.
Because I felt fine, had no sign of the reasons for treatment that are standard procedure for even doing a Bone Marrow Test to find further evidence for need to be treated, I stated I wanted copies of my tests and wanted to get a 2nd opinion.
If I had not been reading the statements of members here who had advocated for themselves and who were willing to suggest that it is our duty/right to advocate for ourselves, I would not have taken a stance. The way treatment is determined was also what I learned here.
Accepting what the Dr. says without knowing the personal facts about your own CLL and status is not a comfortable nor safe way to navigate CLL.
Because of valid and authentic information reported linked on this site, I had determined it was not time for me to be treated. The CLL specialist I went to with the a few CT scans, the MRI, and the Bone Marrow Test in my files for his opinion, said he would not treat me yet, he did not see the node that the other Dr. had said was pushing on my kidney and he would not treat me with the medication that was proposed by the last Dr.
That Dr. is my CLL Dr. now. I would not have known enough to make the moves I made if I had not been on this site and seen the SHARED experiences of others as well as the pertinent information in regard to my own CLL profile.
I am only one, but there is an entire membership here that do not "follow like sheep" anyone else's off the cuff or suggestions.
I would like to hear your story, Ampleforth, of your CLL profile, experience with CLL, and experience with Drs. e
Good for you, cllady01! Keep delving into medical matters and advocating for yourself. No one knows you like you know yourself. Most doctors, in my experience, simply regurgitate what they've learned, without regard to the individual in front of them. Few take the time to learn about their patients' diets, exercise routines, daily patterns, etc. Few offer medication chronobiologically; namely, taking into account one's weight, the most effective time of time for dosage, etc. My wife and I have seen doctors who would have been better suited to be ditch diggers—assuming they would know which end of the shovel is up. * As for Amperforth, it appears that he's far too cerebral, and we are far too beneath him, according to his comments, for any of what he might say to actually get through our thick craniums. But give it a go; Id love to be proven wrong.
At last..a sensible empathic reply...Feel free to private message me...Far too much abuse if one posts anything publiclyhere other than "take your Tablets and shut up" I absolutely agree that HU has a place in CLL but increasingly as I mentioned above I believe HU-CLL ONLY comes into its own when peri, intra or post therapy...Prior to that very little of interest to me, is posted publically..YET I've had some wonderful private messages...So vitally useful that they have changed my Oncologist's management of my case after I discussed them with him. I even sent him the reference links sent and we were all impessed.
Would it surprise you to know that I am puzzled as to any evidence of "far too much abuse if one posts anything publicly here other than ' take you tablets and shut up'" in regard to any replies you have been given? Are you defending someone who has posted, because you have not done any posting; you have just replied to selective posts.
I was hoping you might in good faith share just what your CLL profile is with us. It is difficult to find a reason for you to want to come to lecture with enigmatic reasoning as to our experiences with the heterogeneity of CLL that can, if shared, help each who might be in a given profile.
Questions have been asked, but you do not answer questions, you give no information
that supports anyone and you take your replies to some form of lecturing and superior stance that becomes abusive and off-putting.
We are a SUPPORT GROUP of CLL patient. It is the SHARING of each that helps ALL of us to learn as we navigate CLL and the various turns and twists that happen to individual CLLers.
Trolling is invasive and non-constructive, non-instructive. It is bait and switch like behavior that seems to be only for the benefit of expressing the anger you feel, but never giving valuable feedback as to how we can in anyway help you.
Don't waste your time on Ampleforth. Trust me, after 78 years of living, I've come to the conclusion that some people can start an argument with a brass monkey.
Since we’re discussing the nutritional benefits of carrots, I’ll share with you a recipe for Autumn Carrot and Sweet Potato Soup that Linda at groups.io/g/CLLSLL/ shared with me this morning. It is in the pot as I type, and the house smells wonderful! Thanks Linda!
I don't think eating carrots can hurt. However, it's a starchy vegetable and juicing it and drinking the juice without the fiber will induce a sugar high. Not good for diabetics. Not good for anybody in fact. Beta carotene is overrated. Cod liver supplies way more bio available vitamin A. "Eat this to treat this" is a reverse way of approaching a problem. The correct one is what Not to eat to remove what causes the problem. Example-remove all carbs to fix early stage DM. Remove all dairy and plants to fix auto immune problems. No, I won't include links. Do your own research if interested.
I stopped taking cod liver oil when I began Ibrutinib. Omega 3 supplements advised against. I have had cll for 20 years and didnt need treatment for 9 years and another 9 years before I began Ibrutinib. I have never done any fad diets but I do eat a balanced diet. I went swimming for years and cant wait for it to be safe to go back.
I would like those 20 years back and as thats not going to happen, I will have to hope this wretched covid goes away so I can make the most of my life. I would like a magic cure for arthritis. Anne uk
Anne, arthritis is inflammation of the joints. I can't give advice to anyone on Ibrutinib but excluding everything that supports inflammation from your diet would improve it. That's the advice for otherwise healthy people,who don't have CLL. Perhaps your doc could chime in with advice. If he is more knowledgeable than 99% of them, that is. I'm suspicious of the BALANCED DIET thing. It's usually code for mixing unhealthy junk into one's diet. I never did fad diets either 😊. That's an expression people with a vested interest in some kind of a diet try to spoil the business of other diet promoters. Like when weight watchers call Atkins a fad diet. Or near everyone calls keto a fad diet. What is and what isn't healthy as far as diet is concerned is an exact science. Its not like politics or beauty that are up to interpretation. Problem is few people know this.
I forgot. Since an omega 3 to omega 6 ratio of 1 to 2 or in the worst case up to 1 to 4 is an important part of a healthy diet, how do you ingest enough of the omega 3s? The usual Western diets have this ratio at 1 to 20 or higher. Strongly inflammatory.
I must admit my diet has changed a lot due to changes in medication. I used to suffer with constipation and mixed muesli with walnuts, linseeds and either chopped figs or apricots. Then 2 years ago my epilepsy tablets were changed and I stopped taking anti inflammatories and cod liver oil, linseeds and walnuts. I had begun Ibrutinib and was given co trimoxazole as well. Then I had irritable bowel syndrome. Stopped eating fruit.
Now my pain relief has been changed and thats giving me constipation and I cant remember when it started but I dont want a large meal. My appetite is reduced. I have always eaten fresh vegetables and salad but I admit my interest in food has diminished. I used to eat oily fish but have not discussed if thats ok.
I have never examined different elements of my diet. I am convinced that I would have had cll anyway as my Dad died after having cll for 3 years, age 45.
I think stress, worry, grief triggers cancer and also makes it worse. You have to consider whether concentrating on your diet means that a person is dwelling on the cll.
I think the instability in my spine and arthritis have caused more trouble than the cll.
Whist you can go for a run and dont suffer fatigue it is a reason to appreciate life and many people are so frightened by this diagnosis they forget to enjoy the life they have.
I have had fcr and it gave me remission. Am I lucky it worked and the Ibrutinib has worked? Did going swimming help? 1 consultant told me that taking multivitamins could be feeding cancer cells. I used to take those and garlic.
Maybe I will look up the things I eat and examine if they contain omega 6.
I am normally outgoing and I miss my friends. That probably helps our health. Covid is getting to many of us and maybe depression makes cll worse. Anne uk
Generally speaking I love this support group! But never do we come closer to being the same as other manifestations of modern online communication, as when we discuss diet. Mutual respect, politeness, and tolerance seem to go out of the window. People are entitled to their opinions about what they consume. We always need to hear in mind that current medical advice promotes nothing more than a normal healthy diet for CLL. The rest is currently opinion. I have a very particular diet, but will not be discussing it in this group for that reason. People may have individually done a lot of research into their particular diet, and are entitled to share their findings with others, that is what the site is all about. If people feel they have strong anecdotal evidence for their opinion than that is also fine, as long as it is recognised as such. But why we can't discuss these matters with the mutual support, tolerance, and affection that we normally show for each other is beyond me.
Agreed..mutual respect...espwhen politics seems irresistible to some to inject into conversation. Health policy is a great topic but political slights better left to twitter, etc.
Admin are often criticised for coming down hard on recommended nutritional regimes which veer very close to being touted as ‘cures’. Diets that assist and improve the wellbeing of members are welcome but I’m afraid the untested and unproven smoothie, wacky and wonder ingredients can encourage some (especially the desperate) to abandon meds in favour of them.
Your closing sentence, ‘If people feel they have strong anecdotal evidence for their opinion than that is also fine, as long as it is recognised as such. But why we can't discuss these matters with the mutual support, tolerance, and affection that we normally show for each other is beyond me.’
I am very supportive of eating choices to slow/cure CLL and do not wish to step on anyone's HOPE. I tried a lot od different food groups with out success. I am against self medication because dosing is a major factor. Too many people feel that "if a little works, then a lot more works even better".
Just remember, during the war, a particular group of RAF night-fighter pilots were achieving a high rate of kills on Luftwaffe bombers. They were using centimetric radar, H2S, (which the Germans didn't have). To explain this success, the RAF peddled the rumour that the interviewed pilot put his success down to eating large quantities of carrots to improve his night vision and that started the myth about carrots and night vision. He wasn't using his eyes at all, at least, not out of the window!
I remember an Interview in patientpower with Dr Keating who had a Patient drinking Lots of carrot Juice and bis WBC went up so after hectold him to stop immediately His WBC went down again
So carrot juice causes CLL..wow. Any science behind that Dr. Keating? I told Dr. Keating that I was taking graviola extract and my WBC went down. He heard "ravioli" and put it in his notes that my eating ravioli dropped my counts. We had a great laugh...Miss him..the warmest MD I ever met. Not afraid to make an emotional connection with his patients.
This has be debated on this forum. "if a little works, a whole lot works even better" school of self medication. I would not look good with orange skin.
Politicians didn't make the vaccine, scientists & manufacturers did. Please, people, stop attributing things to politicians & administrators except politics, policy, etc.
Actually Mr Trump inferred he was responsible for getting the vaccine out quickly, but the drug company who researchedcand made the vaccihecsaidvhe did not. That's a fact. Not wanting to disturb you in any way but I trust facts.
OMG—"...more biased than [I'm] willing to admit"? Get off your high horse, please. Since you've been on this subject for a while now, the question is: How many times do you need to beat a dead horse? * First, I explicitly said the comment was a joke. You know, too much carrot juice and you can turn orange? Got it? A joke!
* Second, I happen to be a Trump supporter. Therefore, my joke was nothing more than a joke, and, from my perspective, had nothing to do with politics. A joke from a supporter. Got it?
* Third, I was called out recently by NewDawn, and rightly so, for making a mildly snarky remark. Actually, I didn't think it was snarky, but the last thing I wanted to do was hurt the feelings of the person I addressed (Lankisterman), of whom I am a huge fan. So, I immediatety apologized, and have taken to heart NewDawn's admonition. * If you don't have anything good or nice to say, don't say it.
Dear newyork8. Quite honestly, I wish you all that's good and find this unsettling. In your last reply to me you are quoting me as saying something I never ever have said about anyone. Think you must be mixing my post up with a different someone else's post. I don't know the specifics of all this. Could we please forget about this matter. I'm not in your country, could we shake hands virtually and have a good afternoon. Bye 👋👋.
Apology happily accepted. You couldn't have known my political leanings. Believe it or not, my first post to you was just c-a-n-c-e-l-l-e-d because I used the term "c-a-n-c-e-l c-u-l-t-u-r-e." Unbelievable!
I knew this post would get ugly. Reading it is like watching a train wreck in slow motion. It’s unfolding before your eyes and can’t do anything about it.
Alternative medicine and covid conspiracies always get political and opinionated with VERY little facts.
Now that everyone had their say, can we get back to curing cancer with carrots please?
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