UK CLL Forum, UKCLLFORUM

Diet suggestions?

Topic Made On: Jul 15, 2014 08:29pm
ddinnes

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I was diagnosed with a "CLL-like" disorder some 3 years ago and up to now I have had no treatment. My white cells though are growing and I suppose that some time soon I may have to have treatment.
I have seen some comments that there may be some diet options that can help alleviate the disease. Green tea extract has been mentioned as has a raw diet. Does anyone have any other suggestions please?




Replied On: Jul 16, 2014 01:46pm
Domineys

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Hi

Sorry to hear of your diagnosis and change in your white cell count. I was diagnosed with NHL (Non Hodgkins Lymphoma)in 2001. It was already at Stage 4 with the prognosis uncertain. In 2010 the NHL had changed to CLL, with partial p53 deletion. This is beginning to relapse again, but my consultant's target is to keep me going till I reach 20 years from diagnosis and there are now new chemo options available for me!

I attribute my ongoing survival to effective chemo; change of diet; plant based supplements to support my major organs and immune system; and a positive attitude.

I recommend 2 books by Chris Wollams of CancerActive (www.canceractive.com) a non-profit making organisation. He has a Cambridge 1st in biochemistry and his website reports impartially on research from around the world. The books are:

1. "Everything You Need to Know to Help You Beat Cancer" and
2. "The Rainbow Diet"

Both books are available on Amazon or from the CancerActive website.

Anyone interested in changing their diet may find "The China Study Cookbook" useful. The author is Leanne Campbell, daughter of T. Colin Campbell of "The China Study" fame. The cookbook is American but the recipes can be adapted using the guiding principles. "The China Study" is regarded by many experts as the most important book written in recent years on health and nutrition

I pay privately for plant-based supplements from an integrated medicine clinic, where they are prescribed as a result of checks of my major organs. The main objective is to boost my immune system and maintain an alkaline enviroment within my body (cancer cells thrive in an acidic environment) - dietary changes also help to achieve alkalinity. The cost of these supplements may mean it's perhaps not for everyone, but my husband and I prefer to use our limited pension incomes this way rather than take annual holidays etc.

I find that actively doing something which may help my condition helps me to keep positive. I hope you'll find something helpful from the sources I've given.

With all best wishes

domineys (Ann)



Replied On: Jul 16, 2014 03:56pm
Bubbles55

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ddinnes

I am slightly confused by your comment cll like. Have you actually been told you have CLL. If so it is your ALC (Absolute lymphocyte Count) that you should be monitoring.

Be careful of anything that says it will boost your immune system as it could also boost your ALC.

I and others have found green tea supplements or drinking green tea does seem to help, as does exercise and keeping fit.

The count should be on the form which your consultant will normally give you if requested.

Best wishes

Bubbles55



Replied On: Jul 16, 2014 09:01pm
AyeWright

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Macriobiotics is another option you can investigate. It's not raw food but it is close to vegan. Like many if not most dietary regimes that are touted, the focus is basically on alkaline over acid. With this it is achieved through a change of diet. Perhaps a totally thorough change, depending on your present diet. And if you want to pursue the philosophy of macrobiotics more thoroughly it is really a complete lifestyle change - one point being to remove as many potentially toxic sources as possible from your immediate home environment (eg no plastic containers). From a dietary perspective, it is just that - the change is achieved through diet, without supplements. It can be very time-intensive, though, and the classic texts rely quite strictly on its Japanese origins, for foodstuffs, and these can be difficult to source, or tend towards being expensive like supplements - but more contemporary perspectives are more flexible to using more locally sourced food, or to allowing some items that were once frowned upon (eg tomatoes). Macrobiotics does require effort, consistency and will.

Above all, as mentioned, your attitude wins the day. And that's another topic!

Good luck.



Replied On: Jul 17, 2014 07:10am
Admin

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Cutting out or reduce suger and carbohydrates seems to have worked for me. Like you I was diagnosed about 3 years ago although my blood tests showed signs two years before that. I have just been discharged by the Hospital and have to go to my GP every 6 months for a blood test check.



Replied On: Jul 22, 2014 05:38pm
ddinnes

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Many thanks for all your helpful suggestions. I shall certainly follow these up!



Replied On: Jul 22, 2014 05:55pm
Venceremos

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The most important thing of all is to eat fresh, non-processed food, and consume no refined carbohydrates. In the space of fourteen months in 2009-2010, I'd been hospitalised for four months [Pulmonary Embolism, Pneumonia, Surgical Tracheostomy, Wernickers Encephalopathy] to be followed with a diagnosis of CLL [Watch and Wait]. My immediate dietary reaction, was to become a vegan. I got a copy of the remarkable book by Dr Colin Campbell, The China Study. The principle premise of The China Study, is that animal protein, is effectively an adhesive for many chronic diseases.
A vegan diet, can be difficult to get right. For eg: soya milk/yogurt, is derived from unfermented soybeans; unfermented soybeans can be toxic. In 2013, I was hospitalised for thirteen days for acute pancreatitus caused by gallstones, I ended up having gallbladder surgery. I can't say whether this was due to my previous two year consumption of soya products. However, to be on the safe side, I no longer consume soya milk/yogurt.
It is possible to have a balanced, healthy, tasty vegan diet.



Replied On: Jul 25, 2014 01:54pm
Pauline007

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My husband was diagnosed with CLL nearly 19 years ago, and has had one batch of chemotherapy in 2012. He is 'healthy' by the standards of many on this site. I am a bit sceptical of people who say you must eat certain things or avoid certain foods. My husband smokes and drinks (yes, I know you're all shocked), and he eats whatever he wants, but I will say we have a fantastic butcher, and we do eat proper meat that's locally sourced, not the horrible water-filled stuff you get in the supermarkets. Other than that, we've had no major dietary changes. Our opinion is that if you change your lifestyle to suit your disease, it will become an all-consuming part of your life, and you will never be able to forget you've got leukaemia. We both lead normal lives, and have only to consider the CLL when he needs treatment, or at the two-monthly hospital appointment. You need to live your life and enjoy every day!



Replied On: Jul 26, 2014 11:31am
Heather

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Pauline I couldn't agree with you more. I have had this horrible disease for 13 years and had a lot of treatment, but having said that I wholeheartedly agree that you must live as near normal a life as possible, and not let the fact that you have leukaemia dominate it. I to have always eaten what I like and enjoy the odd glass of wine, but please, please get your husband to give up smoking. Regards Heather



Replied On: Jul 26, 2014 02:54pm
Kevin

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I am another in total agreement with Pauline & Heather on the diet issue. Had CLL for nearly seven years now with FCR treatment and apart from a very small change in diet because of Diverticulitis (Bowel perforation) I have continued with the same eating habits. (I did give up smoking though, and that alone pushed me to eat more, my excuse anyway!)
I did some research myself both in the library and online and came to the conclusion that moderate to extreme diet changes were not proven to be beneficial with CLL. In my quest I also found there were a large number of cases where people on these "special" diets have suffered from other side effects such as iron and vitamin deficiency, and other ailments.
My own experience is to get on with life and enjoy it while you can. There is a quote that springs to mind that I think sums up the diet/CLL issue nicely, it states "I refuse to tip toe through life only to arrive safely at death"

Regards Kevin



Replied On: Jul 27, 2014 11:06pm


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Kevin,Pauline,Heather,
I hope and trust, that you're as "sceptical" of Big Pharma, as you are of people who advocate an "extreme" diet.
I feel very lucky, in that I've been on Watch and Wait, ever since I was diagnosed with CLL four years ago; moreover, my lymphocyte count has significantly improved during this time. Whether this improvement is due to my vegan diet, I honestly don't know.
Whether it be due to the influence of the food/farming industries, or the influence of Big Pharma on the medical profession, and the subsequent influence that the medical profession has on some of us diagnosed with CLL: but it never ceases to amaze me how seemingly intelligent people can be so set in their ways that they like to carry on with their pre-diagnosis eating habits; oblivious to what those eating habits could be doing to their own health, and seemingly closing their minds to other ways of doing something as vitally important as how you eat.
In my life, I've found original thinking to be as easy as breathing. When you know what you're doing: a vegan diet, can be a balanced, healthy,tasty diet. If anyone else wishes to read The China Study, and debate its contents with me they're welcome to do so.
In my considerable experience of dealing with GP'S/Consultants, it's been quite frankly staggering, just how generally ignorant they are when it comes to how diet can effect human health. They're pretty-much still stuck in calorie/fat level territory. Doctors in general go to junkets held by Big Pharma, and form relationships with Big Pharma, that can be potentially corrupt; therefore, this is why it's so vitally important for people with and without CLL, to think for themselves.
What I'm doing with my diet, is giving myself the biggest chance that I can that'll I'll never need chemotherapy.
There is no definitive cure for CLL; moreover, it's been my personal experience that whilst being on a vegan diet, the quality of my blood has improved during the past four years.

Regards
Alan



Replied On: Jul 28, 2014 11:52am
Heather

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Alan, Oh dear we do seem to have opened the proverbial can of worms, don't we? I would just like to say that just because I follow a near 'normal' diet doesn't mean that I am against anyone following whatever diet suits them. Everyone's leukaemia is very personal to them, as is how they live their lives. My consultant is superb and advocates a healthy balanced diet with a referral to a dietician anytime that you want one, so they are not all ignorant, also if it wasn't for him I wouldn't have had some of the treatment that I have, and wouldn't be here now! As this is an argument that no one will ever win I think we should just live and let live.

Regards Heather



Replied On: Jul 28, 2014 05:35pm
Oleboyredw

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During FCR treatment in 2012 I altered my diet as advised by consultant and nurses. Other than that I've made some minor alterations in my diet but nothing drastic.

Those changes made were partially driven by a hypertension diagnosis 'in parallel' with my CLL diagnosis.

Given the many variations in CLL that people experience I suggest diet changes and effects are very personal.

Things I've changed:
1: reduction in red meat - note, reduction not stopping
2: changed from full fat to semi-skimmed milk (stopped it totally in tea, never did have it in coffee).
3: stopped eating shellfish
4: started drinking green tea as alternative to others (my two favourite are now Earl Grey and Jasmine Green).

As to The China Study, got it, read it, and read a lot of the analysis of it. I personally don't buy into it, however, as Heather remarks... live and let live. I don't see Kevin,Pauline and Heather's diets as "extreme".

regards, rob



Replied On: Jul 28, 2014 07:09pm
Kevin

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Alan,

Firstly I don't dispute that your vegan diet may be good for you, nor do I want to try and tell you how to live your life. Your last comments made it seem like others and myself are making a big mistake in our decision to continue eating as we see fit or perhaps have been advised. Also I personally have had experience of someone with CLL who was on a Vegan diet. Two and half years after I was diagnosed with CLL I had to start FCR chemo. Whilst undergoing treatment I met a woman who almost like me had been diagnosed two years previously. She was a Vegan and followed a strict plant based diet. She became ill during the third cycle of chemo but it was nothing to do with the chemo. She suffered very low energy levels, her skin condition was very bad and she lost her periods.
At first the specialists thought it was the chemo because of the fatigue but a more detailed medical investigation indicated a gross vitamin and protein deficiency plus a large imbalance of her hormones all because of her diet. When "Normal" eating was resumed her health picked up again almost over night and she was able to continue with her chemo cycles again. Her own doctor had diagnosed her with "orthorexia", a "fixation on righteous eating" which causes people to become consumed with what they eat.
I couldn't begin to tell you what she actually ate or how strict she was with her diet but obviously there are those who may cause themselves more harm than good in dieting as in her case. You can imagine that this incident was not a good advertisement for a Vegan/Plant based type diet for myself or others in the haematology suite!

So in summary Alan, you do what you think is best for you and I really wish you the best of luck and good health, but please leave us alone to do what we believe is best for us. Don't criticise us for what you believe are our short comings, nor ridicule us with statements like "how seemingly intelligent people can be so set in their ways", or "In my considerable experience of dealing with GP'S/Consultants, it's been quite frankly staggering, just how generally ignorant they are when it comes to how diet can effect human health".

We and the GP's/Consultants are not ignorant, we just choose to continue as we see fit with diets that we enjoy and quite possibly are not harming us in any way. There are risks with everything we do in life and we make our choices based on what we know, believe, and most importantly are comfortable with.

Regards Kevin



Replied On: Jul 29, 2014 12:12pm
Admin

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Well said Kevin . I'm sure you don't mean it Alan but you do come across as a condescending arrogant know it all who looks down their nose at others . Life's too short . We know that more that most. Let's just be nice and try to support each other. Too much conflict already in this crazy world . Be kind rather than right . Be happy 🌈 respect each other's opinions .



Replied On: Jul 29, 2014 08:49pm


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Kevin,
Thanks for your reply.
I've not criticised or ridiculed any member of this forum, nor have I implied that any member of this forum is ignorant, I'm just encouraging member to think outside the box based on my experience with my diet, and my blood counts.
Most of GP'S/Consultants that I've come across have been very helpful, clever people. However, I refuse to regard them as the new high priests.
In today's increasingly commercialised NHS, I believe that some healthy scepticism is a good thing.
I had a hospitalisation in 2009, when I nearly died, and another hospitalisation last year that in a nutshell consisted of just straightforward pain. The most noticeable difference between the two ward experiences was the food, and for the worst. The hospital in question: has outsourced its catering, to a private company, that was feeding patients, with a much higher proportion of processed muck, than was the case in 2009. Some of this 'food' was served in sealed, plastic containers of the kind that contain BPA [carcinogenic]. Even the vegetarian food was sometimes served in this unhealthy way with little nutritional value. Me being me: I had the catering manager come up to my room, and got him to go over to the nearby supermarket, to get me some fruit and coconut milk (proud of it).
The woman that you referred to who was on a vegan diet, whilst undergoing chemo: obviously I wasn't there but it's possible that the improvement to her health under treatment, was as much psychological, as anything to do with the change of diet, particularly with today's hospital food. There is literally no way that any healthcare professional in hospital, would acknowledge that the food, might be making their patients sick. They are definitely not ever going to acknowledge that whatever treatment they are administering could be the problem.
For the doctor that you mentioned to equate veganism with orthorexia, is both laughable and a little disturbing; moreover, it validates all that I've said with regard to the healthy,questioning attitude, that in my opinion we should have with all healthcare professionals.
With regard to your "leave us alone" remark: I am as entitled as you are to post on this site, and I won't be censored by you. Everything that I've stated has been said with the best of intentions. If I've got just one member of this forum to question more then I'm happy.
As far as I'm concerned, that's the end of this thread.

Regards
Alan



Replied On: Jul 29, 2014 09:15pm
Venceremos

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Heather,
Thanks for your positive thoughts, I'm glad that you're happy with your consultant.
I've taken on gangs before (kidding).
The China Study by Dr Colin Campbell, may even be available in libraries now. Either way: if you ever choose to read it you'll completely understand the context of my experiences with GP'S/Consultants, when discussing dietary issues.
All the best and keep well

Regards
Alan



Replied On: Jul 30, 2014 09:05am
Admin

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==============================
I agree with a Vegan diet and the china study. I truly believe that being vegan will help control myCLL. Shame on our health care system to not teach nutrition to doctors nor to teach preventative care versus a cure.



Replied On: Jul 30, 2014 10:32am
steve y

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All,
Hi , I am new to this forum. 55 year old
I was diagnosed with CLL in November 2013, after going through a marriage break up, then my Father dying, my new partner had noticed I was getting tired and had raised glands on my neck.
I had a routine blood test and remember my,G.P telling me that I was doing all the right things , ie my diet was healthy, non smoker, regular exercise regime, which consisted of swimming, gym twice a week, circuit training, badminton twice a week, circuit training weekly.
he did state however " although you are doing all that is required for a healthy lifestyle, you cannot beat the genetic make up lottery".
This was before my blood results, which took both I and my GP by surprise.

I had moved by then, so another Gp etc but I was mighty grateful my previous GP picked up on my condition.
Moving to Coventry, I changed GP,s and saw a consultant who after tests and examinations, (lymph node counts etc) put me at stage B.
My lymphocyte count doubled within 6 months and so my first cycle of chemo (FCR), started 3 weeks ago.
I was kicked of with Fludarabine and Cyclophosphamide tablets over three days, with the Rituximab being given as an infusion on the next monthly cycle of 6 monthly's.
I know this is a Diet thread so to mention that I have continued to eat, (fairly) healthily, fruit, vegetables cutting down on processed foods, sugars etc.
I have also purchased "The China Study", after reading about it on this forum but from further research also found supposedly eminent "professionals", debunking some of the authors theories. I guess not surprising in the health and nutrition world!.

I think the upshot for me will be, to look at the "China Study", (although for me seems a little to technical)with this extra knowledge I will devise my own eating plan that may encompass some of the books views but also fits in with my lifestyle.
I do not intend letting it rule my life though, just generally, what I deem to be sensible.
I have already become, perhaps rather zealous in my quest to kill my new enemy in the home, Ie germs. In doing so recently, while being rather over zealous with a can of spray bleach inhaled the fumes in and had a wheezy chest for two days. I now realise that in my quest to remain healthy, I can in fact do myself more harm.
I applaud those that can be thorough and disciplined in their own quest to stay well. I think mine will be a little more relaxed, stay positive, be both aware and careful in what I do in the way of food and cleanliness etc. Living with two Dogs does worry me too but as they are part of my life, I will cope as best I can.
I do find this forum useful and will continue to pick up tips and investigate myself alternative ways.

My new partner also practices Reiki, although I had little knowledge of this practice until this last year , I will take help in whatever form I can.
For instance, I recently found, what I thought a good suggestion, in that having a bottle of Vicks First Defence in the cupboard, which I shall bring out the first sign in our house of someone sneezing !

Kind Regards

Steve from
Coventry



Replied On: Jul 30, 2014 07:08pm
Kevin

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Alan,

Let me just add that you are right, it is time to put this diet thread to bed. Hoping not to sound like I am trying to get the last word in I would just like to add this. The woman I mentioned was not in hospital whilst any of her symptoms showed up. Like myself, she was only there for one day a month for her Rituximab infusion as part of the chemo cycle. Her diet was her own doing, as was the recommended change to a non vegan diet, it had nothing to do with doctors nor dietician's. Her tests showed she had a gross vitamin and protein deficiency plus a large imbalance of her hormones whilst on the vegan diet. Her tests days after going back to a non vegan diet showed a completely back to normal set of results with regards to vitamins, protein, and hormones.
I'm sorry you feel "censored" by my and perhaps other peoples remarks. You are of course not censored in any way and have the same right (and have obviously executed that right) as everybody else using this forum.

That is it, I am done now on the subject, I wish you all a very healthy future.

Regards Kevin



Replied On: Jul 30, 2014 07:57pm


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Hi Steve,

Welcome to the forum. You have been in the wars as they say. On top of a marriage breakup and your poor father passing away you are given the news you have CLL. I'm sure you will find us all approachable and we can help each other through this horrible Disease. There has been a lively debate on diets just recently and I can only suggest you look at as many of the comments written here and also gather information from other sources and then decide on what you are comfortable with.
Diet is like everything else to do with CLL you make choices based on what you read and agree with, or perhaps are directed to do by a specialist.
Off subject here but you mentioned "over zealous with a can of spray bleach" and possibly worried about living with two dogs. I was like you half way through my FCR cycles. I was rushed to hospital with a burning fever and high temperature. I was diagnosed with Neutropenic sepsis (severe infection of the blood) and placed in quarantine and drip fed antibiotics for five days. I only remember the last couple of days
in hospital on that occasion, the rest of the time I was in and out of consciousness and very confused. I was told by my haematologist that I had what was called neutropenia. I then decided to make every effort
to ensure I avoid circumstances where I might be vulnerable to infection again but in the end went completely overboard and made myself miserable. So now I live as normal as life as possible and try to enjoy myself
with my family. I don't do nearly half the exercise you do but I walk my lively boxer dog through the countryside each day for about 4 miles. I too was worried about my dog and possible infections but my haematologist told me that I only need be a little extra careful when undergoing chemo because of the compromised immune system at that stage. So no more horrid sprays, diets I don't like, or avoiding my furry companion.

Regards Kevin



Replied On: Aug 01, 2014 02:31pm
ddinnes

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Good afternoon all,

I am the guy that started this thread off and boy have I touched a number of raw nerves!

I am inclined towards the camp that says you should have exercise, a balanced diet and probably avoid any kind of excesses of food and/or alcohol. So far I am fine but I have not yet started any treatment as I know many of you have so maybe I shall change my view in time.

In the meantime you might be interested to see this video which recently appeared on the American PEN site. I have to say they have some good stuff on this site including some good interviews with specialists. This one deals with diet - and surprise surprise the only dietary suggestion is green tes extract! Enjoy!

http://www.patientpower.info/video/is-diet-important-in-controlling-the-progression-of-cll/?autoplay=1&utm_source=health-topic-alert&utm_medium=email&utm_campaign=CLL-2014-0108-09&utm_content=program-heading-c

All the best

David



Replied On: Aug 01, 2014 02:40pm
Kevin

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Hi,

An interesting video on "should people with CLL diet" has been made available on the CLLSA website, worth a listen I think. Just click on the link below. Take care.

Regards Kevin

http://www.patientpower.info/video/is-diet-important-in-controlling-the-progression-of-cll/?autoplay=1&utm_source=health-topic-alert&utm_medium=email&utm_campaign=CLL-2014-0108-09&utm_content=program-heading-c




Replied On: Aug 01, 2014 02:41pm
Kevin

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Sorry David, I seemed to have linked to the same video as you already had, only a few minutes later! Quite an interesting video though.

Regards kevin



Replied On: Dec 01, 2015 09:35pm
pendle witch

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Just wanted to add that, for me at least, the less animal protein I consume the better. I am now at WBC 33, after 9 years, and a small portion of fish is enought and more makes me want to gag. Swiss chard, on the other hand, I feel I want eat voraciously. Listen to your body - though I worry meat eaters don't Want to. Everyone gets every emotiove about food and at the end of the day, you decide. My next door neighbour had breast cancer and despite all the research that she should give up dairy, she didn't. She died last year. You make your choice. I'd chose healthy vegan every time



Replied On: Dec 02, 2015 11:28am
Yanni

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Hi All
I was dx back in 2009 but there was with high blood counts from 2007 that I was not notified by some unknown reason but today I have my WBC total in the normal range 10.4 and yes without chemo or any ridiculously expensive drugs.
Now please I respect everybody's opinion and please do not follow my advice without your doctors approval, I also I am not here to compete on the WBC count but to show you how I have at first followed the usual ridiculous Watch and Wait advice up until 2011, at that time my WBC had peaked at 20600, I had every little cut or burn turned septic, even the cryo therapy on my numerous facial skin issue wrongly blamed on the sun (solar keratosis solid basal carcinomas) turned septic. My toe nails fungal, constant sore throats and chest infections, night sweats, thrushy tongue etc etc etc and everybody blamed on what I regard as the manufactured term called CLL.
Unlike most I treat this thing called CLL as an infection, I follow a Ketogenic diet based on Dr Atkins old books the reason I am doing this is that I believe I am fighting a bacterial infection a chronic one that is why my Lymphocytes increase and finally have found it in a 34 year old gold crown that house the bacterial infected tooth and the gold prevented the xray to penetrate and expose it.
So for me along with the high vitamin d3, magnesium (which I now know help control the periodontal bacterial infection), high ph, high water intake (to decongest the lymphatic system), topical application of Iodine tincture 7% on my skin issues, some oral intake of Lugol's iodine on specific times especially after dentist aggravated cleaning procedure, stopping all my BP meds especially diuretics I think I cover most I use a ketogenic diet lots of meat with fat with vegetables, no sugars or even fruit (few berries), Real full fat Greek yogurt with friendly bacteria no not the heat treated stuff, no starches and even bread, in other words my body is in a lyposis state rather than a glucosis state fat free is a dirty word in my home. By doing this I think I am controlling the bacterial infection that has multiplied to such an extend that symptoms that CLL feature and it is working for me, look up and with your doctors help try even a diet to control Candida or even H.Pylori.
One more point I just had my 60 year old colon cancer test and it is all clear, so eating meat all my life has not turned to colon cancer either even with my challenged immune system and my body has not been deprived of any vitamins that my red blood cells need to function correctly.
I may have missed a few points but covered most.
Oh I must add over the last 4 years I have self experimented and have shown how I can increase my counts when switching to a high sugar diet even for 30 days or by stopping my Vitamin d3 intake with similar effect, but also have now brought them down by re introducing the ketogenic diet and the Vitamin D3 and most of the above.
Real pity I was not given a chance to share this at the CLLSA meeting at St Bartholomew hospital in London, I did ask but apparently they were not able to fit me in. Dear Patients dx even later than me who have been treated with what I regard as poor results were allowed to address the audience and most of their talk was based on how tough they are and I understand as this is their way of coping but the numbers are still high, well maybe next time or maybe not? I do not think they want to upset the investors and sponsors of the big profit poisons Real pity. But at least the speaker is finally agreeing on the bacterial involvement which I have been shouting about the last 3 years on other CLLforum. Wish everyone the best outcome what ever route of treatment you choose. Have a Happy and Merry Christmas and a healthy new year.



Replied On: Dec 02, 2015 10:12pm
Venceremos

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I concur with Pendle Witch completely. I presume that she's read The China Study by Dr Colin Campbell, I recommend it to all.
I've been on Watch and Wait for five years, all of my counts are stable and I'm fit and well. Whether this is due to my being vegan for over four years and vegetarian for six years is impossible to prove either way. However, I believe that what we eat is critical to our healthy well-being when dealing with our chronic disease. Indeed far more so than any GP/Consultant that I've ever had any dealings with.



Replied On: Dec 03, 2015 09:46am
Yanni

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Here is a link of the late Dr Hamblin regarded by some as an expert in CLL at his specific time. There along with a lot of information he does touch the subject of eating meat (B12) and vegetables, he also considers the importance of fat soluble vitamins A and D. On the Vitamin D since then I was able to self experiment and prove for myself that it works, but at far greater levels of 25(oh)d3 than the low guidelines (above 200 nmol/L). There is some more good information maybe a bit dated but good anyway. http://mutated-unmuated.blogspot.co.uk/2011/01/alternative-therapies-for-cll.html



Replied On: Dec 04, 2015 06:27pm
pendle witch

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The China Study by Prof T Colin Campbell is astonishing, so is Your Life in Your Hands by Prof Jane Plant, who cured herself of breast cancer, which 5 rounds of chemo failed to do. I read the thread by Dr Hamlin, but I can't agree, especially in the light of comments such as bacon is fine to eat. We now know that isn't the case and it has now been placed on the list of top carcogenic foods and is rated as dangerous as asbestos by the World Health Organisation

You have to make your own mind up at the end of the day.



Replied On: Dec 05, 2015 12:03pm
Yanni

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Hi Pendle witch, my personal experience I can say the following my wife never eats bacon and very little meat, never smoked or abused any substance and yet has the second cancer in the form of lung cancer I on the other hand always ate and still eat bacon on a daily basis and no solid tumor cancer and no bowl cancer either but for my so called CLL, you see the general term of carcinogenic that points to the various end results has failed to address the real causes, the moment I treat the cause as a bacterial/fungal infections it all becomes clear and by controlling this infections by starving them off sugars starches etc that fuel them I am controlling my CLL and now trying to help my wife too.
The advice of the of W.H.O has been challenged by others, it is the advice of this W.H.O. and other organizations that have got us into a deficient state in most minerals and Vitamins and their advice of ensuring no Sun exposure is their biggest crime yet.
Now do not get me wrong I wish I did not have to eat another creature and that would make my daughter and one granddaughter very happy who are vegetarians, but I cannot see a alternative that will feed my bodies requirements and I am seriously concerned with my daughter and granddaughters diet, but I respect their choice and beliefs as I do yours. I am also human and I do give in to sugars, yesterday was my son's 34th birthday and I drunk 1 alcoholic drink laced with Coca-Cola and ate cake that contain sugar, yeast and starches, the first rich carbs in a long time, but today back to my routine until Xmass day and then New years day the only other exempt days.
So the only advice I can give is treat cancer or even CLL as an infection and you may have some control over it, if the WBC reduce when trying a specific diet say for Candida Albicans or H.Pylori diet it may well point to the cause of your CLL been an infection. Then look at the possible areas such as our stomach,skin, mouth, dental repairs/dental plaques and periodontal infections as areas and reservoirs of this bacteria. But always work with your doctor we are all different but this is how I control my so called CLL.



Replied On: Dec 05, 2015 11:19pm
Kevin

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Hi All,

Can I just suggest that anyone contemplating going on to a strict diet check with either their haematologist or family doctor first, both for guidance and possible monitoring. It is all very well recommending diets on this forum that you may personally use but that does not make it right for others. Just recently there has been a number of negative comments on the "China Study" because of unsubstantiated claims and misrepresentation of data. The following link from Denise Minger makes for some interesting reading:-
http://rawfoodsos.com/2010/08/03/the-china-study-a-formal-analysis-and-response/
There are many more like the above if you look. I am not saying many of these diets don't work or could harm you, just be careful and try to gain as much knowledge as you can of the possible consequences of dieting. We must also be wary about statements put out by professional bodies regarding food and drink. Antioxidants were good for us for some years, now they are linked to cancer. Coffee was bad, then good; chocolate was bad, then good, then bad again. If we paid any heed to all the things researchers tell us can give us cancer, then we’d probably have to give up eating and drinking altogether.
The World Health Organisation are not claiming that eating processed meat is “as bad a cancer threat as smoking”, nor are they saying that “processed meats pose the same cancer risk as smoking and asbestos”. They are merely claiming that the evidence that there is some increased cancer risk is strong enough to be considered proven. You also have to remember that W.H.O also places the air we breathe as carcinogenic but I'm not giving that up!!

Kevin



Replied On: Dec 08, 2015 05:35am
Venceremos

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Kevin,
Have you even read The China Study?

Alan



Replied On: Dec 08, 2015 01:48pm
Sunflower

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When I was diagnosed with CLL about 2 ½ years ago, friends immediately said: ‘You will have to stop eating meat!’ As a huge meat-eater, this was a very difficult lifestyle change for me to make. My dear son jumped immediately on the internet, starting to do research to the causes, the cures, possible treatments and what not for CLL. I will be ever thankful to him for doing this. He sent me a link of a video clip which truly changed my mind for ever (see below), however…
If people these days ask me: ‘Are you on a special diet?’ I would answer: ‘Not in particular, I just try to eat as healthily as possible.’
Nothing can cure CLL 100%, as far as we know. The scientist still do not know what causes CLL to develop in some people, and not in others. But surely there are ways to make you feel better, of one which might be a better diet. Unfortunately, I could not find any proof of any scientific research study which could support that a better or particular diet could cure one completley from CLL. (I think the people doing research on CLL receive only grants from huge drug companies, and not from healthy food companies... ); )
No, I do not think any particular diet helps, or will turn tables completely around. What I do believe, and this makes sense to me personally, is that the condition of having and suffering from CLL lowers one’s immune system – my white blood cells aren’t up to defending my immune system the way they used to do it: Thus – whatever I eat must IMPROVE and BUILD my immune system, as much as possible! That would include all the different Vitamins and all the minerals. In other words, I try to stuff my body with GOOD foods, and avoid, as far as possible, foods which are labelled as BAD (with some controversy, naturally). A good knowledge on what you eat and all the vitamins and minerals it might contain is a good start. Trying to consume as much of these as possible by eating fresh, and not replacing what nature has given us necessarily with pills and tablets and artificial fortified drinks. Yes, fresh might be costly, but worth the contribution to your general welfare. It is also worth looking into the advantages of different herbs, spices and strange, unknown foods such as Chia seeds, Acai berries, a variety of nuts & pulses, etc. The emphasis here is on variety, for different foods contain different amounts and combinations of Vitamins and minerals. I eat absolute loads of different greens (fresh, as far as possible). It takes about 6 months - 15 years for all cells in your body (ten trillion of them) to break down and get regenerated with new cells and body tissue, so, persevere!
The big question still is meat: Meat, or any animal products, has the tendency to make our body cells ‘acid’, which is NOT good for any cancer. Although many fruits contain acid, the moment you consume fruit, the fruit acid changes into alkaline, which is much better for building healthy cells. I still consume some animal products, and find a couple of hard boiled eggs or omelettes a week are good for me. Oily fish is excellent, and I also start taking fish oil supplements lately, which appears to help the dryness of my skin and up my defence mechanisms. I will eat about 2 tablespoons of red meat a week. The reason for not omitting meat completely from my diet is because Vit B12 is only to be found in meats, and can’t be replaced by anything else. Cutting out Vit B12 altogether, could cause some additional problems to your body and general well being.
Vit D is something else. There are two types, as you might know: Vit D2 & Vit D3. Vit D2 can be consumed by eating Vit D2 rich foods, such as oily fish, mushrooms, eggs, and fortified milks and breakfast cereals, for example, but Vit D3 is absorbed in one’s body by exposure to sunlight (The availability of a supplement Vit D3 is limited). In some of the research or life stories I read on patients with CLL, there ‘might’ be a link between CLL and a shortage of Vit D (hence still not completely scientifically proven as far as I am aware…).
I also do the following: I try to exclude any dairy products, but will eat some cheese once a week. I replace my milk with fortified rice milk, which is quite tasty. The cheese of choice is halloumi, the saltiness stops my graving for red meats. I drink additional Calcium capsules, and it appears that the so-called coral calcium to be the better option. All these different nutrients and Vitamins sometimes work better if consumed together, such as Iron rich foods together with Vat C rich foods and Calcium.
And then exercises: Tough exercises tire me, no doubt, so I listen to my body. Occasionally I will go for an hours’ walk, or a slow jog/walk on a treadmill. Water therapy is lovely and refreshing. Sauna, steam room, swimming and Jacuzzi relax me, and always make me feel good and energetic. I also treat myself from time to time with a Reflex treatment. Although yet again no scientific proof, it relaxes me, and makes me feel more positive. Light weight exercises builds bone, which is hence good for healthy bone marrow, together with sufficient calcium intake.
Since I was diagnosed, I gradually introduced a better psychological lifestyle attitude, and got rid of things in my life which put unnecessary stress on me, and hence on my immune system – for stress might be a huge culprit in fighting off CLL. Stress puts extra demands on our immune systems. Try to introduce things in your life which you know will calm you down, lessen your frustrations, feeding your own dreams, for often, we, as adults, we push our own talents, and desires and dreams aside for the sake of our families and children. I had a good talk with all of them, and had to make painful changes, but they all understand, and lo and behold! They’re surviving just fine without me worrying myself sick over every move they make all the time. This new attitude of me was possibly the most difficult to overcome, for I used to be a bit of a control freak and worry pot. Above all, I do believe strongly in my God and Saviour, and believe that He has a good plan with all of this. He wants me to calm down and take stock of my own life, to stop running around like a crazy chicken, and trying to be a people’s pleaser all the time.I have calmed down now, and almost selfishly looking after my own demands first, before looking at anybody else’s’.
With more and more demands on the NHS resources, and me been ‘dismissed’ from the CLL clinic lately, with the following words: ‘We do not know what you do, but you do something right… ’, it might be a good thing to pursue other (alternative) well being possibilities to give us a better quality of life. Every CLL case is different, and some ideas might work for you, and some not.
The above story and advice is no remedy to become cured from CLL, but it might give some of my fellow CLL sufferers perhaps a bit of hope, or guidance, or peace of mind. God bless.
A Youtube video worth watching. https://www.youtube.com/watch?v=1DCjwIVJmMw&feature=youtu.be




Replied On: Dec 08, 2015 01:56pm
Kevin

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Yes Alan, I have read it, you were drumming it's virtues on this very same thread eighteen months ago. I have nothing against Dr Colin Campbell or his works and thought some of his preaching's made a bit of sense, it just wasn't for me at that time nor is it now. I have since seen a number of references to Dr Campbell's work that possibly show that it not the diet/eating regime its cracked up to be. You also have to remember that professional CLL experts like Dr Hamlin comment that meats, in particular bacon are ok to eat in moderation and I believe him over the Dr Campbell's of this world. I have said it before but will repeat it again, there are risks with everything we do in life and we make our choices based on what we know, believe, and most importantly are comfortable with, each to their own.

Kevin



Replied On: Dec 08, 2015 02:17pm
Kevin

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Congratulations Sunflower, you have sought and found a better way of life with CLL and found a diet that suits you and looks like it is good for you as well. I am sure this will give other CLL sufferers both hope and guidance, well done.

Kevin



Replied On: Dec 10, 2015 05:55am
Venceremos

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Sunflower's vitamin B12 point is a very important one, so much so that I'm going to review my diet.
However, quite why Kevin posted a link by the plagiarising blogger, Denise Minger I don't know. Denise Minger, has no qualifications in medicine/nutrition. Regardless of what one may think about The China Study, the author Dr Colin Campbell, was at least qualified and honest enough to write it.



Replied On: Dec 10, 2015 08:42am
pendle witch

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I think Sunflower's diet research makes sound sense and the variety is what vegetarians and vegans have to consume to get all the vitamins and minerals they need. As for B12, you can often get this from organic vegetables and certainly from fortified coconut milk or other milk substitutes, as well as from supplements.

Any of Prof Jane Plant's books are excellent. She is a cancer sufferer who cured herself when conventional medicine failed, so she really knows what she is talking about.



Replied On: Dec 10, 2015 01:31pm
Kevin

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Hi Alan, I can see you are not letting go of your bone so I will make this my last entry on the subject. You asked me if I had read the China Study and I informed you I had and that although it appeared to make some sense its preaching’s were not for me. I then give the good users of this forum a link to someone who has some valid misgivings about the China study and you erupt with defamatory comments about a plagiarising blogger when referring to Denise Minger. My only intent with these links to alternate views was to give folk here a chance to make up their own mind as to following the China study diet regime. Admin pointed out earlier in this thread that, quote "you do come across as a condescending arrogant know it all who looks down their nose at others". You have obviously not changed and that is sad.
http://chriskresser.com/rest-in-peace-china-study/

Kevin



Replied On: Dec 11, 2015 09:48am


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Kevin,
You've deliberately quoted Admin out of context, when it comes to his past remarks about a previous posting of mine, which makes you about as honest as Denise Minger.
There's nothing "defamatory" in my previous posting. Forum members can Google DM and find out for themselves what sort of reputation she has. It's the sort of reputation that won't be suing anybody. If you'd owned up to making a mistake in posting that particular link that would've shown some honesty on your part.
I didn't restart the debate about diet, but I was happy to join in with pendle witch and others, who've read and appreciated with open minds The China Study. This is a health forum, where an increasing number of members have conveyed to the rest of the membership their positive health experiences of going on a vegan diet. In stark contrast, in previous postings, you've quoted a doctor who regards veganism as being an eating disorder, and you've told cancer sufferers that eating processed meat is perfectly all-right.
Please don't post any more dodgy, misleading links. It's not good for anybody's health.

Alan















******Comment amended by Admin******



Replied On: Dec 11, 2015 01:43pm
Kevin

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Very nice and grown up of you Alan, ending your last message with a threatening "*****Comment amended by Admin*****". Charmed I'm sure!

Kevin



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