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ASH Conference Speaker: Diet valuable in reducing Inflammation and Symptom Burden in People with Blood Disorders

OK, so I'm one part blown away, one part grateful and one little part "I told you so!"

In a Patient Power video recap of the recent ASH conference in San Diego. Andrew Shorr interviews various speakers, among them: Dr. Robyn Scherber, an asst professor of hematology and oncology at the Mays Clinic in St. Antonio, TX. She discusses new promising research showing the link between diet and inflammation which is a part of most blood disorders. Very simply, she suggests that reducing inflammation through diet can slow down the progression of our blood disorders as well as "reducing symptom burden." I think we all know what that means from our personal experience. I can now see the day when specific diet changes and nutrition (and a host of other holistic approaches) will be less scoffed upon by conventional medical practitioners and will in fact be coordinated with any treatment protocols to improve quality of life and length of life. This is exactly what the alternative/complementary medicine community has been saying for years. Thanks to all of you who have bravely shared your diet and holistic approaches & successes in these forums. There is hope for us all.

Here's the Video link:

patientpower.info/ASHDaily2...

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Ooh is there a web link?

Peggy 😀

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patientpower.info/ASHDaily2...

I'll put it above too! Thanks!

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Thanks. That’s great. This is an area I’m very interested in. 👍

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Me as well! And I can see my choices are working, how about you?

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Ah see, that’s the thing. My mind is willing but I just CANNOT keep it up. My love of chocolate and all sweet things is legendary!

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Yes, too much refined sugar and refined carbs, according to many, is one of the main culprits of illness. I really do see all illnesses as specific responses to specific factors such as sugar. I can see that every time I have too much sugar or insufficient sleep or too much stress - I get the first signs of a sore throat and eventually either a sinus infection or cold. Every time. Why wouldn't those same factors be involved in the more serious diseases?

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Me too. I can talk a good diet.

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Absolutely! 🤣

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I’ve always believed in a link between inflammation and my own CLL but I think it’s a giant leap to suggest it’s always solely diet related. A mammoth leap to then claim ‘this is what the alternative/complementary medicine community have been saying for years’.

There are many reasons for systemic inflammation including a host of medical conditions. It’s not always down to bad diet.

I’d be very interested in reading the link and in particular the interpretation you report that claims a definite link between diet and inflammation and how it forms a part of ‘most blood disorders.’

Incidentally I’m not sure Andrew Schorr is actually a Doctor.

Regards,

Newdawn

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Corrected Schorr's "Dr." Status already thanks! Never meant to suggest that the link is "solely diet related" - where did you get that? But glad you've made the connection in your own experience. I have too.

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It was this sentence which was suggestive of that assertion;

‘She discusses new promising research showing the link between diet and inflammation which is a part of ‘most blood disorders’.

I welcome this research but am wary of moving into suggestive causation which simply makes people feel guilty. Just how big a part does stress play?

Newdawn

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Maybe you should watch the video. I don't believe I didn't overstated her claim.

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That’s a very confusing double negative jawdfs but of course I’ll watch the video because it’s a subject I’m greatly interested in as my past posts demonstrate.

healthunlocked.com/cllsuppo...

Newdawn

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Im convinced stress plays a major part in cancer. If you look back to times of serious worry it can show change. Iv always thought eating a balanced diet was important but I cant imagine going to extremes eating food I had never heard of before. I have fibromyalgia too. Anne

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I think people hear what they want to hear sometimes and frame the debate in different ways.

The little bit I heard was about a "survey" they did which reports people who eat better report less "symptom burden". I would think that makes perfect sense. Everyone who eats a better diet should feel better and be less prone to any illness.

That's not, to me, what the "alternative/complementary community has been saying for years", or at least not what in the context of some of the forum discussions you have on here. There are a lot of people in the alternative community that falsely promote unproven supplements as a cure or substitute for conventional medicine, and those are the posts that often get questioned.

Integrating a healthy diet with conventional therapy is a great idea, I don't know anyone who would argue against that. But eating good foods high in antioxidants and low in sugars is a different thing than taking unregulated and unproven supplements.

Even more dangerous is taking supplements and alternative remedies, as some on here advocate, instead of conventional medicines.

And while I don't doubt the validity of a survey that says that people who eat healthy report less symptoms, that's a far cry from a clinical trial that proves one particular food or supplement has any real impact on our cll that would be a substitute for conventional treatment.

I do not know of any doctor that would scoff at the notion that a healthy diet should be integrated with our conventional medicine. I don't see this as offering support for unproven and unregulated supplements.

I would like to see a trial with a green tea cohort and an ibrutinib cohort. I have an idea how that might turn out.

Similarly, if you did a trial of a cohort of ibrutinib plus over weight smokers who have a diet of big macs, vs a trial of a cohort of ibrutinib plus people who eat fresh vegetables and fruits and exercise, we have a good idea how that one turns out.

There is hope for us all and I think an holistic approach to our illness that doesn't exclude proven drugs is great.

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👍 cajunjeff.

Newdawn

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I agree with cajunjeff

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Whenever this subject is raised, we all agree that dietary choices can improve our health and aid in our ability to survive infections and other effects of CLL, but few foods have any clinical evidence that when consumed, they can make a major impact the accumulation of CLL cells. Large quantities of EGCG and Curcumin can make small differences in CLL cell accumulation, but they have side effects.

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And I would also add the results of a 2017 study showed that mortality was 2.5 times higher among patients with common cancers, who chose only alternative medicine instead of standard cancer treatments such as surgery, radiation, chemotherapy, immunotherapy, and hormone-based therapies! :

medpagetoday.com/primarycar...

healthunlocked.com/cllsuppo...

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Len

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All points well taken, Lankisterguy. Still feel compelled to mention that all conventional drugs have side effects, generally far far worse than what you are suggesting might be true of Green tea extract or curcumin. What does interest me a great deal, however, is the study you cite above about survival rates. I actually saw some published data from an alt cancer clinic and noticed that while their short term survival was much higher, their 5-year survival was on a par with or sometimes slightly below the conventional treatment survival rate.

Also want to be clear that studies are important, nay essential, but it's also important to realize we are not dealing with a level playing field when it comes to what gets funded and who funds them. The finding does not come from the holistic/alt/comp field. It comes from Pharmaceutical companies. Just today, a colleague of mine, who does IT for a law firm here in NY, told me the story about a lawsuit involving a single drug pharmaceutical company and the pressure the CEO put on the team doing the trails to complete their study in less time than they said was possible. And this research team (in India btw) was picked solely on the basis that it submitted the lowest bid. The emails back and forth between the heads of the companies was like an episode of the Sopranos. Follow the money as they say.

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Do you have a link to: "I actually saw some published data from an alt cancer clinic and noticed that while their short term survival was much higher, their 5-year survival was on a par with or sometimes slightly below the conventional treatment survival rate."

It is hearsay until it is linked to a reputable published article.

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I do NOT agree with your statement that all conventional drugs have side effects generally far worse....

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In my case Venetoclax has none- it has me in complete remission and MRD neg.

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If I were to take 1 gm of EGCG daily and on alternate days the suggested dose of Curcumin I expect that my wonky liver would go wild with high SPGT/ALT and my ALC might be lower than my point of treatment, but not more than 10-20% lower, certainly NOT a CR or MRD neg.

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Len

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Zydelig (idelalisib) had no side effects for me...but PolyphenonE, certainly whacked my liver counts...

So, I'm with you Len...

~chris

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I am truly happy for you and me both - I may need the same drug some day and I hope it works as well for me. But we can agree to disagree on the matter of safety of pharmaceuticals vs. natural therapies. And I truly hope you don't develop the "common side effects" of Venetoclax which, according to one website (https://www.rxlist.com/venclexta-side-effects-drug-center.htm) include:

low white blood cell count (neutropenia)

diarrhea

nausea

low blood iron (anemia)

upper respiratory tract infection

low levels of platelets in the blood (thrombocytopenia)

fatigue

nausea

vomiting

constipation

fatigue

fever

swelling in the extremities

pneumonia

back pain

headache, and

cough

The Mayo Clinic seems to include a more exhaustive list, but doesn't mention them as "common" side effects so that doesn't tell us much:

Black, tarry stools

bleeding gums

bloating or swelling of the face, arms, hands, lower legs, or feet

blood in the urine or stools

body aches or pain

chest pain

decreased urine

dry mouth

increased thirst

irregular heartbeat

loss of appetite

mood changes

muscle pain or cramps

nausea

numbness or tingling in the hands, feet, or lips

pale skin

pinpoint red spots on the skin

rapid weight gain

seizures

tightness in the chest

tingling of the hands or feet

troubled breathing

unusual bleeding or bruising

unusual tiredness or weakness

unusual weight gain or loss

vomiting

mayoclinic.org/drugs-supple...

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Many of those symptoms are regularly experienced with CLL, which Venetoclax resolves after treatment. A listed common side effect doesn't mean it will be experienced.

In the USA, between 150 to 200 people die from food allergies each year - at least half from eating peanuts:

health.howstuffworks.com/di...

Yet nuts are recognised as a food that provides health benefits: healthunlocked.com/cllsuppo...

There was a 17% reduction in the risk of dying in the study period for those that included nuts in their diet. "The reductions for heart disease was even bigger, 29% and for kidney disease it was a whopping 39%. Cancer deaths were cut by respectable 11%"

I know of three deaths attributed to Venetoclax during the clinical trial phase. The trial was stopped and the current ramp-up process implemented so that this powerful non-chemo drug can be safely administered.

Neil

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As the grandmother of a medical scientist (Nuclear medicine) I can confirm this, a trial only lasts as long as the finance, everything is finance related and scientists then have to move on to the next funded trials with the Pharmaceutical companies.

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I would ‘like’ this several times if I could Cajunjeff

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To be clear, the aspect of the alt/comp community that I was referring to is the diet (and lifestyle) components. They all emphasize diet and nutrition and Dr. Scherber was making the same connection and saying that new research was suggesting that diet could slow down the progression of blood disorders. One thing I agree with is 'we hear what (we) want to hear.'

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Well I might qualify for that part of the alt community. I practice yoga, meditate and try to eat well. I think that does help.

I am not so sure about those things actually slowing down the progression of my Cll. I am open to any study that proves that. I don’t consider a “survey” to be much proof though, nor the opinion of an isolated doctor vs the medical community. I don’t even find her opionion goes that far other than to be open to the possibility.

I also find “slow down” as a somewhat vague and unquantified conclusion. Clinical trials use randomly assigned cohorts and blind studies to give us results that are quantified. Hopefully Dr Scherber can use her survey to get a real trial done so we can see exactly what foods slow blood disorders when compared to cohorts that don’t eat those foods and how much it slows it down.

It’s plausible to me that diet can help slow disease. The danger for me jaws is that a large segment of your alt community, as you call it, are wired in a way to choose unproven remedies they consider natural over modern medicine.

But hey, we are in it together friend, and insofar as integrating a good diet into our lives we have common ground. Jeff

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Very well said! I agree whole heartedly! 👌

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I think it's interesting that when you are young you can get away with eating and drinking almost anything without ill effect. As i get older - I'm now 70 - my body lets me know pretty quickly when I'm eating well and when I'm not. I just need to listen to it and to respond. For example, last night, unusually, we had pizza. It was delicious but today I'm feeling bloated and unwell. Today I'm craving fruit and vegetables so that's what I'll eat the most of for the next couple of days. Incidentally, I'm also wanting to eat less and less meat. I'm almost an accidental vegetarian verging on vegan, not for ideological reasons - although I accept them - but just from giving my body what suits it better. I'm still ill! But I wonder how much worse I would be if I was eating fast food and sugar all day long.... Now pass me that mince pie....

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jawdfs, I watched the video and I do not see anything that would lead me to say alternative/complementary community would be excited about this dietary study being begun.

We have had discussion here over time re: what is the best way to try to help ourselves as we watch and wait, and diet has been a part of that discussion. There is nothing in the video that suggests alternative/complementary substances will be looked at to add to a blood cancer patients regimen. (Can't say there won't be, but the video does not prove the point.)

The following is but one example of articles we have had posted, you can search diet and CLL or CLL and diet and find others. AussieNeil

healthunlocked.com/cllsuppo...

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Dr. Scherber mentions "connecting the dots" when she's talking about diet, inflammation, and their effect on slowing down progression of these diseases and reducing symptom burden. It seems clear to me. Haven't you ever connected what you eat with your well-being?

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Yes, I have connected the dots in regard to how I feel and what I eat.

What in my reply implied I did not think Dr. Scherber was talking about diet and inflammation and slowed down progression of blood diseases?

I just said there was no pointing to alternative/complementary substances in re: to the study and gave a sample of our having posts and discussions on this site re: diet and CLL.

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To answer your question: When you said there is nothing in the video to make the alt/comp community excited it appeared to me you were contradicting Dr. Scherber's point about diet and inflammation etc. which is something I associate with alternative healing and have known about and practiced for many years. Recently, a naturopath recommended the exact same thing for ex. but it wasn't news to me. I think, we're not in general disagreement here at all, but maybe we chose to view things through a slightly different colored glass? Maybe mine is a bit more rosy (LOL)?

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I agree we aren't in disagreement. If you had made your post only to this community, it would be more comfortable for me to relate my personal experience and you wouldn't have to assume such--no need to answer. : )

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The perennial debate over diet, health and CLL will always be around.

Research into the gut microbiome and its interconnection with the immune system is still in its infancy, but it has already come a long way.

I predict that in time there will be microbiome research specialists linking up with CLL research specialists. (If they haven't already). And one day the overall gut health of a CLL patient will be somewhere in the clinical mix.

So diet matters - Anyway, that's my non-medical opinion for the day.

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jawdfs,

You are making a lot of assertions and doing a lot of extrapolation here to link CLL to diet and inflammation, where the connections are NOT necessarily there, nor are you providing clear references to support your claims. From an interview with Myeloid specialists at ASH, you are extrapolating to CLL, a Lymphoid condition. In this Simplified Hematopoiesis diagram, the myeloid stem cell line is on the left and the entirely separate lymphoid stem cell line from which CLL derives, is on the right: en.wikipedia.org/wiki/Hemat...

Full Hematopoiesis article: en.wikipedia.org/wiki/Hemat...

Andrew Schorr himself notes in the video you referenced (thanks!) that he has both Lymphoid and Myeloproliferative specialists, highlighting the importance of these different specialities for his health. The differences in treatments between myeloid and lymphoid blood conditions are quite obvious in the video.

Dr Scherber is involved in the medical oversight of the NUTRIENT study, which is open to those with a myeloproliferative neoplasm - MNP (polycythemia vera, essential thrombocythemia, or myelofibrosis), NOT CLL:

mpnforum.com/diet/

wearempn.org/interestedinen...

"inflammation which is a part of most blood disorders" are your words. Dr Scherber actually said "Well this comes back to the idea that there's so much baseline inflammation and changes in the immune system that happen especially with myeloproliferative neoplasms but also happen with a lot of other blood cancers". (My emphasis)

You are extrapolating inflammation to dietary causes, but diet can be just one of the causes of inflammation.

Then you state that "I really do see all illnesses as specific responses to specific factors such as sugar."

The alternative/complementary medicine community assigns a whole host of potential causes for illness, diet just being one of them.

There's no argument that the best way we can equip our bodies to live as well as possible with CLL is to keep it running well. That means giving it the right fuel (diet) and looking after it well (maintaining fitness and ensuring adequate rest).

I'd say that cajunjeff's reply to you is a far more balanced, objective view than the one that you have presented.

Further to cllady01's reply to you, here's a post of mine where I examine the degree that diet can influence our journey with CLL once we have contracted this illness:

healthunlocked.com/cllsuppo...

CLL is still considered incurable and if diet choices were as significant as you portray, I would expect far more cases of people with CLL reporting 'spontaneous' remissions or major reductions in symptoms than is the case. A CLL diagnosis is a wake up call to look after our health better, which generally includes dietary changes.

Neil

PS I'm sure most of us would appreciate an indication of where to view points you consider of interest in an hour long video without a transcript, particularly when is not specifically about CLL! Andrew Schorr introduces the diet related to MPN discussion at the 42 minute mark, which lasts about 3 minutes. Dr Scherber says "I can't yet recommend any dietary changes, other than stay healthy and stay active." (My emphasis)

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Interesting. I agree on all that Newdawn and AussieNeil have posted. Since I was diagnosed last year I decided that I needed to be in the best physical condition that I could be so I deliberately changed my life style. I gave up dairy and caffeine and regular exercise. This has led me to lose 24 pounds this year. I also have arthritis and type II diabetes. I must say that I have more energy that I ever had before. I feel quite good. That being said my numbers remain the same as far as CLL is concerned. I still hover above 11,000 in WBC and my RBC and platelets are still lower than they should be.My arthritis is still painful and it is a treat when I allow myself to take an advil. I am in the early stages of this journey but I am glad that I decided to get my body and mind in shape. I got a book that someone posted on this site entitled "The Metabolic Approach to Cancer" by Nasha Winters. The author gives some good advice on nutrition.

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So, I read everything here, then watched the Patient Power video. As there are several leukemias / lymphomas in my family I found video interesting. I was surprised, however, at all of the speculation here about diet and inflammation attributed to it. Yes, Dr. Scherber mentioned having an interest in the connection and that there is a survey, with a study to follow about it. And she said what most of us already know - that a sensible diet is important, but she emphasized that she could not recommend any particular diet. That consisted of a handful of sentences in the overall presentation. I guess some here heard what they wanted to hear - a few comments related to diet in a long presentation about up and coming treatments for MPN.

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You said in a paragraph what it took me many paragraphs to say. Lol. I think when the gift of succinctness was handed out I got passed over somehow.

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I'm totally with diet as a significant contributor to my disease progression. When I took gluten out of my diet, my progression slowed significantly. I strongly suspect that the inflamation brought on by my gluten alergy caused my CLL. I know however, there will not be a lot of funding toward study of this because there is no money to be made here. It's kind of negative, but it's also a fact of life. I choose to always remember the motive of drug companies. They are helping us but that is not the driving factor.

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Here is a piece I wrote for the CLL Society Tribune a couple months ago on the impact of diet on CLL. cllsociety.org/2018/09/the-...

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Thank you Glenn. Very well written piece. Your experience confirms and affirms my own:) All the best and good health to you.

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Excellent piece Glenn - I see you 'get it'.

The body is a self-repairing organism and requires optimum nutrition and exercise to assist it to perform its work. It's a simple enough premise, but many of the smartest people in the medical field just don't get it - it's not part of their paradigm.

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I think that's a very unfair statement about those in the medical field. From my experiences, the overwhelming majority of medicos acknowledge your statement about the body being a self repairing mechanism as being 100% correct. They acknowledge that their involvement is limited to helping our bodies heal themselves by providing a bit of assistance when needed. That might mean surgery after an injury, antibiotics or antiviral to help our immune system, removal of a tumour, or shrinking it by radiation or drug therapy or aiding failing organs through other interventions, perhaps because we have genetic disorders that predispose us to health conditions, irrespective of our diet or fitness.

Neil

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Neil - I'm not combative by nature, so I don't wish to start a heated debate, but..........

I agree 100% with you statement but it doesn't include the category of diet and nutrition.

My experience with the medical profession has been positive within the limits they have created for themselves. Hippocrates said that when a patient presented himself with a malady, he first changed their diet. If this proved ineffective, he would use medicine. And if that didn't work he would resort to surgery.

The understanding of diet and nutrition and how it affects our health is very comprehensive, but your average GP and specialist are not in touch with it. As another poster said, they sometimes scoff at the role of diet as a catalyst for body repair.

There is a certain amount of confusion. The world of so-called 'Alternative Medicine' propounds cures for specific diseases with targeted 'natural' foods and supplements in the same targeted way as allopathic medicine. Both paddle in the shallow waters of alleviating symptoms without treating the underlying cause. Both broadly practice 'disease management'. Medical science has a term for the complete disappearance of disease even though they may not understand it, and that is 'Spontaneous Remission'. In other words, 'the body repaired itself, but we don't know how.'

I am neither pro nor anti allopathic, naturopathic etc. I just find that the mainstream thinking has limited itself and there is a need for a broadening of the understanding of health maintenance in order to escape the single-armed approach of disease management.

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Another Hippocrates aphorism is 'Extreme remedies are very appropriate for extreme diseases." : en.m.wikiquote.org/wiki/Hip...

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Big dilemma, there are literally thousands of different compounds which can be ingested into your body. It is also impossible to determine possible effects and interactions between all of them to gain an acceptable health risk assessment. Use of dietary supplements clouds the issue even more as they are not regulated by same FDA rules for drugs in USA. What is hyped on media as a cure all for healthy people may actually do harm in possible combination in sick people. Like many on this website, I tried turmeric, piperine and green tea without success. Lack of success may have been my dosage or any number of factors. I also purchased a water purification machine which provides me with alkaline water. Did not work. I do not however want to step on anyone’s desire to try different approaches to their health as we all need hope where we can find it. My doctor gave me what I consider great advice, “Don’t do anything to change your blood”. Now that I am in treatment phase I am a believer in healthy diet and moderate exercise to prepare oneself for treatment. The connection between diet and reducing inflammation is well documented. Many feel that chronic inflammation is part of heart issues. Also being in B+R treatment, I am not to ingest strong antioxidants.

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Hi Jawdfs,

As others have already said, there’s really nothing new in what Dr Scherber is saying, so I’m surprised you feel “blown away” by it.

I don’t think anyone on this site would say that diet is not important to health.

It's true that some doctors have been dismissive of the importance of diet. When patients ask what they should eat to help their CLL, they’re often told nothing will make any difference. Not helpful - most of us could eat more fresh fruit and veg, less meat, less salt, sugar and avoid processed food.

Adjustments to diet will be even more important for people who are overweight or who have allergies.

But it’s also true that some people have been given unrealistic expectations of what certain diets - sometimes extreme, complicated diets, will do for them. Many end up very disappointed.

We are all keen to find practical, non-pharmacutical ways of helping ourselves on our CLL journey, so you might like to read this article, that I wrote several years ago and updated recently. healthunlocked.com/cllsuppo...

It’s a list of “29 Things we can Do” to help our journey with CLL". I gathered most of the points from this forum, so it’s very much a joint effort from everyone here. These are not complicated medical things – they are relatively simple things that we can do ourselves. Exercise, diet and affects of inflammation are amongst things mentioned.

Best wishes,

Paula

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So many good points in your reply, thank you. Let me add this, at the risk of putting too fine a point on this topic: My hematologist said there was absolutely nothing I could do when I asked him in 2015 what I could do to help with my CLL. Perhaps what he said was literally true. However, what Dr. Scherber says about the link between inflammation and symptom burden and even in slowing down disease progression does suggest to me that there's a lot I should be or could have been doing to help with reducing my symptom burden or, as I would put it, having a better QoL. And why wouldn't that be important to him? It is to me. As I've been exploring this area for many years now, reducing chronic inflammation - and I really appreciate the way the panel and Dr. Scherber explain some of the symptoms of inflammation and how pernicious it can be on the body - is a lot more than talking about eating a good diet. I've always been diet-conscious - probably why I look act and feel much younger than my 56 years, but what I'm doing now is much more serious and I can see is so beneficial - organic vegetable juicing for example.

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Jawdfs, I'm sorry your haematologist told you there was nothing you could do to help with your CLL. Sadly that often seems to happen. When I asked my doctor that question he said there were no easy answers but he had one patient who seemed to keep his CLL at bay by taking up long distance walking.

I've always been a keen walker so I certainly didn't stop when I got the diagnosis. Can never be sure how much difference the walking made but I'm sure it didnt do any harm and I enjoy it.

Paula

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I concur with GlenSabin's view. Similar to an auto engine's systems (cooling, ignition, electrical, etc.) the processes of the liver, vascular, so many other organs must maintain during W&W and during treatment. I lost 35 lbs on keto diet last year before CLL/SLL diagnosis at 78 late last year), and BP dropped from 139/89 to 110/78. No more belly fat, sleeping deeper and better, easier breathing, less stress, etc. Then, no side effects during B/R chemo this year at 79. Easily defeated two infections (staph in foot and another in outer ear), no hospital. Maintaining weight loss by keeping carbs under 100 daily, and controlling sugar intake with sugar free jello (sweet), almonds, walnuts, nut butter, pork rinds (no carbs), and fish, fruit (berries) and veggies. That keeps calories under 1500 daily, necessary for a somewhat sedentary retiree. CT scans show liver, kidneys, adrenals, vascular all OK, and much better than when diagnosed. Point being, that helping all body systems maintain (less inflammation as well) would seem to help all systems tolerate treatments better, as well as help treatments. Worst case is a better quality of life on the way to becoming terminal. My CLL/SLL specialist (Emory, formerly MD Anderson Huntsville), and Emory Nutritionist totally agree.

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For me the culprit is sugar.

I feel better without it so yes diet is important for patients with blood disorders.

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Nobody talks about daily exercise much, I wonder why?

Exercise had a profound direct effect on my CLL, and overall health that diet ever had...

Now I'm eating almost sodium free and my blood pressure is back to normal with no medication, other than for ongoing CHF and A.fib.

~chris

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What? But exercise is something that can't be patented or sold for an exorbitant profit, so surely no-one would be interested in doing studies and trials to prove that?

Oh, but wait, there have been plenty of studies and clinical trials proving just that:

- Exercise Is the best medicine after surgery or cancer treatment: healthunlocked.com/cllsuppo...

- An exercise pill would be prescribed to every cancer patient worldwide and viewed as a major breakthrough in cancer treatment: healthunlocked.com/cllsuppo...

- Physical activity can reduce cancer-related fatigue in post-treatment survivors: healthunlocked.com/cllsuppo...

- Even mild exercise reduces stroke risk and reduces or even prevents depression: healthunlocked.com/cllsuppo...

- National Exercise Clinical Trials Network (NExTNet): uab.edu/medicine/nextnet/

As Dr Scherber said in her closing sentence in referenced ASH video, "I can't yet recommend any dietary changes, other than stay healthy and stay active." (My emphasis)

Incidentally, scammers touting dietary plans and supplements comprise by far the largest category of members banned by HealthUnlocked Support for breaking HealthUnlocked's Community Guidelines.

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I agree with the exercise. I had been going down hill towards treatment. I am not a ball of energy, but feel walking 2-3 miles a day has increased my bodies call for red blood cells, thereby making slight increase in my oxygen levels to where I do not suck air on my walks.

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I believe you are 110% correct - exercise seems to be well documented as one of the best things you can do for sound body and mind. The problem is I hate to exercise! But that's next on my list.

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I agree with your statement and the importance of exercise. There are clinical studies showing improvement in immunoglobulins after exercise. Although the article I read said that strenuous exercise, such as marathon running is counter to boosting the immune system which I found interesting.

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Absolutely agree (and the hardest thing to give up).

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Sugar is easy compared to salt... 🧂🧂🧂

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42 relies in 21 hours! This is more akin to the to-and-fro between supporters and detractors of Donald Trump than about ANY other subject in the CLL-community.

The herbs/mushrooms/tea-extract community versus the Ibrutinib aficionados will never be determined by a war-of-words.

It's too important a topic to allow 'faith' to be accorded equivalence to the gold-standard of empirical-evidence. Only data and never magical-thinking will be sufficient.

So, the point is ... can anyone point to even one controlled study pitting any alternative therapy against any standard medical treatment for CLL where the holistic approach was superior?

Get ready for a deafening silence in replies that include data, URLs, citations, and auditable data-analysis.

Caven

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Good point, but we all tend to grasp at any small sign of hope. Maybe that is not so bad, but people who rely on holistic approach need to also be open to conventional treatments. I have already been through the friend of a friend thing where someone was cured by holistic approach to treatment.

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Noni Juice - ignore your doctors. They will kill you! From someone I thought was a friend. That was almost 17 years ago, and my doctors have done a good job of keeping me on the planet. Not one of them has advised against a sensible diet and exercise as being helpful, and I have made adjustments, because they make sense.

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Orgasms u guys forgot orgasms.

Hope I am not being bold.

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I have gone to a vegan diet for that and other reason. There are so many plant-based meat substitutes now it's very easy.

This is discussed in Glenn's book N of 1.

C- reactive protein( CRP) test Will give you an indication of the inflammation in your blood. Mine is very low now.

Be well,

Hoffy

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Hey Hoffy, I applaud your choice. I agree with the moral and especially the environmental aspect of veganism very much. I Just want to share my own experience: I've mostly avoided red meat for about 20 years and I've "gone" vegan twice in my life, never longer than 18 mos. I really tried. The first time I lost so much weight my closest friends begged me to reconsider my choice. (And I promise you I wasn't binging on carbs or sweets or missing high-protein substitutes. I was doing all the "right" things; legumes, food combining etc.) The second time, perhaps only coincidentally, I developed pneumonia (and lost a lot of weight). Just before going to the hospital, my craving for red meat was so great I had two organic beef burgers that felt life-saving. Afterwards, when they did the blood tests, I found out I was terribly iron deficient. I don't want to say that my veganism contributed to the pneumonia but I do know that I really needed to eat some iron-rich food and the red meat did just that - I felt better right away. (btw 5+ years later, my iron levels are fine now without consuming beef but I do have poultry and fish and sometimes lamb.) Another thing, and I realize this is anecdotal so it's nothing more than that, but I've noticed that many of the vegan's I know are very underweight and look unhealthy. I've also learned from my alt medical practitioners (including Chinese and Japanese traditional medicine doctors and naturopaths) and they all recommend some form of flesh food, obviously clean (organic) as best as one can. True, I wouldn't want to eat corn-fed industrial beef, but there are some good choices, including organic eggs and even a very few cheeses (parmesan from reggiano Italy for ex) that I would consider healthy for many people, and at least for myself. Having said that, I do think humanity needs to consume FAR LESS meat and much more organic plant-based food for a whole host of reasons (including health and well being) and I myself enjoy as much vegetarian and vegan food as I can. I wish you a more successful vegan experience than my own!

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Hi there,

I'm wondering if you could tell me which of the many interviews to click on. I don't want to have to go through all of them to find the comments re diet etc.

Thanks

It would be very helpful

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You'll find the video you seek at the end of this post: healthunlocked.com/cllsuppo...

Part 1 of the above post: healthunlocked.com/cllsuppo...

Neil

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Thanx very much AussieNeil 😉

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