CLL and the Keto diet: I went on strict Keto... - CLL Support

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CLL and the Keto diet

DAN1980
DAN1980

I went on strict Keto starting in January. My labs in March came back showing everything almost at normal levels. I was borderline stage 3 CLL now I am back to stage 1. Next labs are in September and I have maintained the diet. If they have stayed at near normal and not gone back up then it's 100% the diet. I have had it since 2014 but wasn't officially diagnosed until late 2017 due to poor military doctors.

64 Replies
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Do you mind me asking if you were experiencing any symptoms? You say you were borderline stage 3?

DAN1980
DAN1980
in reply to Ghounds

My spleen is swollen and everything was high. I'm only 39 and I believe I have it from exposure to burn pits. I would get sweats sometimes. I don't have any symptoms right now.

Ghounds
Ghounds
in reply to DAN1980

Thank you. I'm pleased your change of diet has helped you, will you keep us posted please?

DAN1980
DAN1980
in reply to Ghounds

Sure thing

Im happy for you; was it clean keto or what they call dirty keto?

DAN1980
DAN1980
in reply to Sushibruno

I try to stay clean minus alcohol, I drink a little on the weekend but the key is being extra good the day after. I've lost 60 pounds since January. I stick to mainly dry wine and low carb beer. I eat a lot of meat, cheese, and eggs. I drink energy drinks with sucralose like bang and reign. Green veggies vs white veggies, you need to make sure you drink more water. If it has more than 2-3 net carbs I try to stay away from it.

AussieNeil
AussieNeilAdministrator

Hi Dan and welcome to our community. From what you've shared, you seem to have fairly stable disease, if you've had CLL since 2014 and are having blood tests every 3 months. Long may that continue!

Would you like to share more about your symptoms and the difficulty you had being diagnosed? As you have found, finding a good specialist, knowledgeable about CLL, is very important when you have a relatively rare cancer like CLL. That can make a significant difference to our quality of life and our life expectancy.

You haven't shared much of what has changed in your symptoms and labs. Also, did you experience a significant and desired weight loss with your diet? It seems that being overweight can cause inflammation, which may drive CLL progression. One of our founding volunteers, CLLCanada, had a 3 year regression, where he saw a drop in his lymphocyte count (ALC), from 136K to 42K, which he attributed to his significant weight loss achieved through exercise and diet.

Neil

I was in a very physical job in the Air Force until 2017. The VA are the one who actually diagnosed me from my entry labs with them. They were able to track it back to 2014 where it initially showed up in my labs but I was never told about it. My symptoms have been mild. Sweats are the most I have experienced my spleen swelled and that in combined with my numbers is what the doc used to classify me at almost stage 3. My white cells were up to 16k of that's Sounds right at one point. I didn't really focus on the numbers, he would show me a scale and I could see if I was getting worse or better on that. I have just tried to live normal and not dwell on it. But the drastic decrease of levels since I started keto can't be denied. September labs will confirm or deny if the diet changes are the contributing factors. I also started exercising more but them the gyms close. I have dropped another 20lbs since the gyms closed just by following the diet. I have lost 60lbs all together.

AussieNeil
AussieNeilAdministrator
in reply to DAN1980

Have you been exposed to Agent Orange during your service? If so, in the USA, you may be able to have your CLL related medical costs covered by Veteran Affairs.

I suspect that your weight loss is probably responsible for your improvement, rather than a specific diet. With CLL, it's important to eat healthly, from a wide range of preferably unprocessed food, rather than go on a restricted diet.

With CLL, it's important to track your lymphocyte count, rather than your white cells, (WBC) for the reasons covered in this pinned post: healthunlocked.com/cllsuppo...

A WBC of 16 is barely out of the normal range. Lymphocyte and hence WBC counts can jump around considerably - by +/- 10 or more even when under 30, when specialists begin to take interest in doubling time. Some of our members have counts well above 400 and are still in watch and wait. Drops in haemoglobin, platelets and neutrophils are at least as important as an increasing lymphocyte count.

There's much more helpful information in our pinned post section here: healthunlocked.com/cllsuppo...

Neil

Welcome to the forum Dan. Cll is a heterogenous disease and it’s not uncommon to have fluctuations with our labs, up and down.

I am glad you believe you are getting benefits from your keto diet. That said, there is no evidence of which I am aware that any diet stops our Cll cells from dividing in any significant way. Are you aware of any reputable Cll studies attributing keto diets to Cll remissions? I have never even heard of a reputable Cll doctor suggesting we choose a keto diet.

Did your doctor suggest a keto diet? Does he attribute your improvement to diet? I am curious.

DAN1980
DAN1980
in reply to cajunjeff

My doctor doesn't think it has anything to do with it, however I didn't nseem changes until I started it and I know with other cancers the cells feed off sugar and carbs. Eliminate those and the cancer dies. I have done lots of my own research on the effects of keto and other illnesses and how it has corrected them. Or low carb no sugar diets. I am by no means an expert just speaking from my own experience.

LeoPa
LeoPa
in reply to DAN1980

If it was that easy Dan, nobody would have cancer. The cancer cells of solid tumours destroy surrounding tissue and extract glucose, they don't need exogenous sugar to survive. I'm on Keto too, labs stable. Inflammation worsens progression and carbs fuel inflammation. Cutting carbs means loosing weight and reducing inflammation. Thus it perhaps slows progression. Definitely worth a try in my book. Keto is the way to go for me. Balanced diets are overrated. They are for healthy folks. No such thing as a healthy balanced diet for diabetics for example. Low carb or even better keto is more suitable for them. Just my opinion. I'm no doctor, just a self made nutrition geek. Keto is not easy to stick to, but definitely worth it for me.

Can you eat any fruit with the keto diet? That would be the hard part for me, otherwise I am totally down with keto and basically already doing it....except the fruit, which I like and think is beneficial nutritionally.

dj02
dj02
in reply to cajunjeff

To my knowledge your right... no trials on the keto diet and they are unlikely to occur, but a rapidly growing body of science does suggest that for many cancers a keto diet offers some advantages as a adjunct therapy to the good therapies we have for CLL--same for exercise which does have evidence that it prolongs lifespan considerably in different cancers. Check out the work of Professors Thomas Seyfried, Valter Longo and Dominic Augustino for leaders in this field. The use of the keto diet, excercise and the COC protocol deserves a trial in watch and wait CLL.-see here for COC protocols designed by Oncologists careoncology.com/

cajunjeff
cajunjeff
in reply to dj02

I am all about the benefits of a healthy diet for cll. I have lost 12 pounds over the last few months eating healthy which includes limiting carbs. The keto diet is nothing new, juts another version of sugar busters. Many of us do have diets too high in carbs and processed foods.

I personally do not care for keto or other diets that exclude or unreasonably restrict good, natural foods. There is nothing wrong with corn, potatoes, rice and carrots, indeed these foods have good health benefits when eaten in moderation.

I dont see Care Oncology as some rapid growing body of science, but rather a typicl alternative cancer treatment site that provides testimonials for support over the results of clinical trials.

I am glad Dan is enjoying the results of his diet. We are all responsible for our own treatment and diet. My only concern with Dan's post is that he relates his improved lab results to the keto diet, which may encourage others to believe a keto diet can reverse their cancer.

I dont think the keto diet does that. So I asked Dan what his doctor thinks, and his doctor doesn't think so either. I am not aware of any mainstream cll doctor recommending the keto diet, although I am sure all mainstream cll doctors encourage their patients to eat healthy.

I do think people generally have too much sugar in their diets and that there is some connection between sugar and cancer. I dont think if your wbc is 50k in June and you starts eating keto in June that it will be 25k on your labs in December. A keto diet is not going to stop cancerous lymphocytes from dividing and multiplying.

I dont consider linking to alternative cancer websites as support for some "rapidly growing body of science". Link me to studies from the Mayo Clinic or MD Anderson. Or link me to interviews with world recognized cll experts.

I am not closed minded to alternative medicines and supplements. I have asked three of the experts I have seen about them and none of my doctors have suggested I take any supplement or follow any unique diet. All have said I should exercise and eat healthy, advice I have followed, except for Friday nights. Friday nights is pizza night.

DAN1980
DAN1980
in reply to cajunjeff

I linked it to keto because that's my experience and I would not have done so if I had not done months of my own research trying different things and then seeing the results first hand. I encourage everyone to watch "The magic pill" on Netflix if it's still there. It is a very informative documentary on the medical impacts of a low carb no sugar lifestyle and how it affects cancers and other disease. Again I am not an expert, I will stand by my claim based on my experience with the lifestyle change. Other good side effects is that my chronic heartburn has dissapeared and my body in general functions better. Again, everyone has there opinions but this is what has worked for me so far. I encourage everyone to do their own research on the subject before dismissing it. It is my opinion that the medical industry doesn't always have your best interest mind because it is a money making industry. That's a conflict of interest in my eyes.

LeoPa
LeoPa
in reply to DAN1980

The magic pill is on YouTube as well. With Spanish subs.

AussieNeil
AussieNeilAdministrator
in reply to DAN1980

Here is a review of the claims in "The Magic Pill" from a reputable source:

abc.net.au/news/health/2018...

Hence the warning in this article on why the video should be removed: “A ketogenic diet is not without risk and it really should be performed in conjunction with a medical practitioner. A long term ketogenic diet can be associated with unhealthy weight loss, kidney stones, and in children can lead to nutritional deficiencies and immune system issues.”

theguardian.com/australia-n...

Dan, you have yet to quantify the improvements you claim are due to your diet in terms of changes in tumour burden (spleen and node sizes, lymphocyte, not WBC count changes and improvements in haemoglobin and platelet counts. To claim a change from nearly stage 3 back to stage 1, you must have that information at hand. Why not share it?

The huge challenge with chronic conditions like CLL, is separating random changes in the illness from causative effects. It's further complicated with CLL in that there's around a 1% spontaneous remission rate. I accept that you have benefited from your diet, despite you not providing any evidence, but I think it is most likely due to you losing weight and thereby improving your overall health. A ketogenic diet is just one way to hopefully achieve weight loss - but there are recognised dangers of staying on one permanently. I don't think anyone would argue that in general, typical Western diets are not the healthiest and being overweight and unfit is not good for our health, but your claim lacks substance.

Neil

DAN1980
DAN1980
in reply to AussieNeil

I saw the numbers on a graph on a screen at the VA. The graph had a steep decline. Believe me or don't believe me I have no reason to be dishonest about it. I don't memorize the numbers because they are just that numbers. I am quoting what my oncologist told me. Stage 3 to stage 1. I don't have copies to give exact numbers. I know off the top of my head WBC went from 16+ to 11.5. I can't quote my lymphocytes. I have been doing low carb zero sugar for 6 months religiously. Call it what you want but I saw excellent results with NO negative side effects I don't care what abc says. I'm speaking to MY experience with it. Lots of people want to say credible sources... Are my experiences not credible because I'm not affiliated with main stream media!? I was an air force special operator. I picked this stupid disease up from being exposed to burn pits. I don't make things up. Period. So believe me don't believe me it's your choice. Im pretty sure I said my tests in September would be the final determining factors. Are there risks with low carb "keto" diets if not executed correctly? Absolutely, thats why I said do your own research and see what's best for you. I was never obese, out or out of shape. I had to maintain a rigorous PT regime for my job. The Only thing I changed was what was I put in my mouth and I improved from borderline stage 3 to stage 1. It's as simpe as that, no BS. I saw a question asking if anyone had experience with keto and oue type of cancer. I have and I answered. So all the ney sayers save your opinions unless you have actually tried it. We all know the media arent the experts and the doctors only regurgitate what they were taught whether it was right or not. My results are proof enough for me.

AussieNeil
AussieNeilAdministrator
in reply to DAN1980

You obviously care about your body, so you SHOULD care about the comments provided by subject matter experts interviewed by an independent, publicly funded and highly regarded media outlet, such as Australia's ABC. Surely they are more likely to provide accurate medical information than a chef? Further, it is to your advantage to keep copies of your test results and take the time to understand what they mean. I've provided the means to do so here: healthunlocked.com/cllsuppo... I hope you find it useful.

As you said, your "doctor doesn't think it has anything to do with it" and frankly, that's an opinion shared by CLL specialists who collectively see thousands of CLL patients that make dramatic lifestyle changes, primarily to their diet, when they are diagnosed with cancer.

I've been studying CLL and reading patient contributions on various support forums daily for 11 years. It certainly may be possible to slow the progression of CLL and even occasionally reverse it - usually temporarily, but unfortunately CLL has a reputation for being incurable for good reason. A re-evaluation from near stage 3 to stage 1 is encouraging and I'm surprised you didn't ask what improved, but a WBC change from 16+ to 11.5 is, I'm sorry to say, inconsequential, as you can see from how much lymphocyte counts change from month to month in these 21 CLL patients:

healthunlocked.com/cllsuppo...

Here is information on staging from the highly recommended CLL Society site: cllsociety.org/2016/03/rai-...

I hope you continue to maintain stable CLL. Changing and sticking to a new diet is very difficult to do long term and shows true dedication. I also would like our membership to be aware that dietary changes far more often than not, don't provide the hoped for improvements in our CLL. That doesn't mean we should just give up on efforts to improve our health. CLL gives us an opportunity to re-evaluate our lifestyle and make changes that can make big differences to our quality of life and life expectancy - but our expectations need to be grounded.

Neil

LeoPa
LeoPa
in reply to cajunjeff

corn and rice are pure sugar, zero nutrition, waste of stomach space. they promote inflammation. GMO corn is even worse. potatoes and carrots are better if you must have them. they are not directly harmful but not essential either. pizza is of course bad for you but you know that already 😊 I think there's nothing anybody can loose trying keto. See for a few months if it works for you. If it does not, you can always go back to your old ways. There's only anecdotal evidence about it's benefits. Nobody has a vested interest in promoting it because there's no money to be made promoting it. Except the makers of those processed keto things which are best avoided by a country mile. Same thing with intermittent fasting. If I stop eating producers can't fight for my stomach space 😊 So they promote the 6 small meals idea instead. Not trying to start a controversy, just putting up ideas for consideration. I love your CLL for dummies series. Much obliged for the time and effort put into it. Wishing you all the best.

cajunjeff
cajunjeff
in reply to LeoPa

Leo, thanks for the kind comments on the dummy posts, glad you find them helpful. I am also glad Dan finds his keto diet helpful.

I posted to make two points. One is that my preference is not for diets that exclude foods or food groups that are natural and healthy. You write, for example with no support, that corn has zero nutrition. This is what Mayo health system writes about corn:

Corn has several health benefits. Because of the high fiber content, it can aid with digestion. It also contains valuable B vitamins, which are important to your overall health. Corn also provides our bodies with essential minerals such as zinc, magnesium, copper, iron and manganese. Corn is a good source of the antioxidants carotenoids, lutein and zeaxanthin, which promote eye health.

mayoclinichealthsystem.org/...

Dan wrote how he believes keto diet impacted his Cll. I was curious what his doctor thinks and evidently Dans own doctor does not believe that to be the case.

I do think many people eat too much sugar and processed foods, which are bad for us. I don’t think we need to eliminate foods like corn and potatoes from our diets, foods that have proven nutritional value.

I do think we are responsible for own diets and I am glad you and Dan evidently enjoy the benefits of the keto diet. I think it’s appropriate to write about diets on here.

I question statements like yours that corn has zero nutrition when it does. I question statements Dan makes that his keto diet starved his Cll of sugar and impacted his labs in some meaningful way, a claim even his doctor does not believe.

I don’t want to come off as being rude or anything, I just want to see facts. I am on ibrutinib and can link to dozens of studies from major cancer centers and hospitals proving how it works. Places like Care Oncology tend to have websites filled with testimonials.

I can link to dozens of respected health sites that say corn has nutritional value. Can you link me to your source that says it has zero nutritional value?

There are many health benefits of rice and potatoes as well. Carbohydrates are a very important source of energy. Too much starch in a diet is a bad thing, but that’s true with most all foods. Moderation is the key.

LeoPa
LeoPa
in reply to cajunjeff

Hi Jeff, thank you for your extensive reply. I stand corrected regarding the corn. I should have written zero nutrition that is not available elsewhere without the high glycemic index and load. Sorry about not being clear enough. My beef with corn is the sugar load and that most of it is genetically modified. You certainly know what you speak about and as long as your diet works for you it's as good as it gets 😊 Enjoy your weekend and thanks again!

1susiE
1susiE
in reply to cajunjeff

Was told by a professor of oncology to go on keto to starve tumours.

Keto since relapse MCL strictly and so far (12 months) doing well on Imbruvica with also exercise and 12 glasses of water (not tap) a day.

cajunjeff
cajunjeff
in reply to 1susiE

I eat pizza and am doing well on ibrutinib. I am guessing it’s the ibrutinib that’s doing the job for us, not pizza or keto, because there are clinical trials and scientific evidence ibrutinib controls Cll. There are no studies of which I am aware of pizza or a keto diet helping with Cll.

stevebran
stevebran
in reply to cajunjeff

Hi Jeff, firstly thanks very much for your well presented and easily understood posts and articles. I just wanted to say that I am willing to volunteer for the Pizza clinical trials, but I doubt that the placebo will have much effect.

That is great! thank you for sharing. What is a dirty keto diet?

"Dirty keto", unhealthy processed foods.

If the Keto diet doesn’t have an effect on your CLL your weight loss and diet will give you an advantage over many other diseases. Congratulations!

Newdawn
NewdawnAdministrator
in reply to YelvertonDevon

For me, that’s the key issue YD. Being a diet controlled diabetic and active on a major diabetes forum, I hear constantly about the benefits that low carb and Keto diets confer for type 2’s. It’s usually about weight loss, resultant dampening of inflammation and impact on metabolic syndrome. All bring benefits to health generally.

However, I wouldn’t suggest that keto has a direct or sustainable impact on CLL but good health does.

Keto doesn’t suit me and it can be hard on the kidneys in some. It’s a diet that can’t just be tinkered with and oversight is needed.

If it works for some CLL’ers and brings them improved physical and mental health then I’d say go for it!

What I’m absolutely convinced about is the damage systemically that carbs create and unfortunately that includes sugar. I don’t believe sugar feeds cancer but a high sugar diet feeds bad health in its totality.

Doesn’t stop me reaching for things I shouldn’t eat however. We can all talk the good talk! 😉

Newdawn

That’s great! Did you included fasting periods ?

DAN1980
DAN1980
in reply to ORMC

Yes I try to do intermittent fasting as well.

That's very interesting. I'm so glad that you have progressed so well and I hope that it continues to improve. How did you find the Keto diet, did you have any particular problems with it.

Very best wishes and keep well. X

DAN1980
DAN1980
in reply to Floxxy

I actually like the diet, it's foods I enjoy. Once you get used to it it's great. Different people react differently though so do your research if you decide to try it.

Dan thanks so much for sharing. Very interesting indeed! I don't know much about the Keto diet but I will definitely check it out.

Congratulations to you for achieving what you did! 🎉

Keep us posted.

Ellen

Hi, I have been following the Ketogenic diet since 1 May and lost 10 KG so far and feel heaps better. Stage 0 on watch and wait since 2017 but just had blood tests done and they too have decreased since my last ones were done [ALC and WBC levels gone down) everything else is ok. . Next ones are due in August so will be interesting to see if they have remained stable or decrease again. From what I have read Ketogenic is definitely a good option to reduce inflammation and boost energy. I am onto the next 8 week programme now, so will be happy to lose more kgs and hopefully boost energy levels further.

Hi Dan,

The fact that there is no evidence to show that these diets might work doesn't mean that this is evidence that they don't work, just that there is no money in studying diets. If it works for you then keep it up! There is no harm in following a diet so long as you make sure you get a good range of micro nutrients, preferably by cooking from scratch, grass fed meat etc.

I lost my way early into lockdown and put loads of weight back on. Your post has inspired me to get back on that wagon. Thank you! Ignore the naysayers 😆

I’ve been Keto for about 3-4 years now. I started the diet to deal with the CLL fatigue. Figuring if it makes a difference for endurance athletes, then maybe I can have a ‘normal’ life. I never believed it could reverse CLL. But, maybe, it could prevent secondary cancers.

Diagnosed stage 0 in 2015 & still at 0. My numbers do increase by about 10% every year. Not doubling or tripling yet.

I was strict Keto for about 2 years. Then added intermittent fasting 3-4 times a week.

I must say, it took me much longer to get into ketosis (3-4 months vs everyone else’s 3-4 weeks).

I stopped being strict because I was losing too much weight & am back to normal activity levels.

Now I don’t track carbs or check my ketones. I still do the intermittent fasting. It’s all a way of life now.

And my CLL checkups are annual now.

Glad to hear it’s making a difference for you.

country76
country76
in reply to JoanneIO

I also practice intermittent fasting.

stevebran
stevebran
in reply to JoanneIO

Hi, did you find that it helped your fatigue and if so what is it like now that you are not so strict? As well as CLL I have fibromyalgia and feel like I am getting a double dose of fatigue with pain and I haven’t found anything that helps. It robs me of any QOL and is so limiting. Now with the added threat and restrictions (most likely lifelong for us) of Covid it’s hard to stay positive and motivated. Still, thank goodness for the NHS. It must be awful to live without the safety net of a proper affordable healthcare system, like most of the world do.

DAN1980
DAN1980
in reply to stevebran

My energy levels definite went up, sometimes I have a hard time falling asleep. I think insomnia can be a side affect of a low carb and sugar diets though. I remember reading something about that when I first started.

I would like to know more about this. I have recently started a low-carb sort of keto diet (except for fruit). And I have been having big problems with insomnia! Is there some place I can read more on this? A link you have?

Looks like it’s a common problem for Keto

perfectketo.com/keto-insomnia/

Yes, and this article also clarifying: insider.com/going-keto-can-...

Keto diet, by reducing carbs, reduces production of serotonin and melatonin because their precursor L-tryptophan less absorbed from diet without carbs.

I think there may be other factors too. Because I feel very wired in the daytime now.

Dan, thanks for sharing. I went from Paleo years ago to strict keto for quite awhile -- but now find that modified keto with time restricted eating works the best for me. I'm not sure how much diet has affected my lab work, but I know I feel better because of it. Gotta love bulletproof coffee!

Hello DAN1980

I did not need to loss much weight and tried the Keto diet. Can not say it did anything for me at all. CLL progression was not stopped or even slowed down. Eating a lot of processed sugar is not good for anyone's health, but jury of doctors is still out as to stopping sugars or carbs which are converted into sugar and helping cancer. Theory is cancer feeds on sugars, now if you do not consume sugars or carbs your body must have sugar to survive. The body makes up for lack of sugars by converting other body components in to sugars for fuel. Weight loss will be of great benefit to you. No one knows what causes CLL and direct link has not been found. Sounds like you are doing very well. Blessings.

Congratulations Dan. Anything that helps us look and feel good is a good thing. Keep up the positive energy. Sally

Hello Dan. About 6 months ago my son sent me a link to the YouTube video of Dr. Thomas Seyfried - Cancer as a Mitochondrial Metabolic Disease. I watched the whole thing through and it sounded pretty convincing, in espousing the low carb diet for cancer sufferers. So I went on the keto diet. At about the same time, a scan found a small lump on my left kidney. A follow up scan was set for 4 months later. I followed the keto diet pretty rigidly, and lost about 30 pounds in weight.

The 4 month scan showed that the lump had shrunk. It could have been the keto diet, or it could have been the ibrutinib I am taking for CLL, or it could have been that the lump just shrank naturally.

My gut feeling is that the keto diet has to be a help, but I would never stop the medical solutions, like Ibrutinib.

DAN1980
DAN1980
in reply to Graham64

My research has shown that cancers feed off sugar or glucose, so eliminate that element and you essentially starve the cancer.

cllady01
cllady01Volunteer
in reply to DAN1980

Dan, I just found this cancer research paper that you may want to read. It helps to share the specific links we have researched. Word of mouth from one source is difficult to feel secure about. Most papers will give you some idea of who is doing the research and which cancers are being investigated. For the most part a blood cancer is not one of those that shows a relationship to having sugar as a growth factor. This paper mentions only Myeloma, a plasma blood cell cancer, but only in relation to being overweight or obese....

scienceblog.cancerresearchu...

cllady01
cllady01Volunteer

I am happy to hear you are doing well with weight loss that apparently was something you needed for overall health. I had the experience of losing 60 lbs. in the 8 &9th years of my diagnosis without any particular diet, but with eating less and a bit better and beginning to walk for exercise (not long miles) but daily in a hilly neighborhood.

I am soon to be 80 and was diagnosed at 60 years old. So, 20 years with no treatment. But, I still have CLL with the same profile I had at diagnosis. It is the deletion at chromosome 13q.14.3 along with a mutated IgHV (immunoglobulins).

That is my claim to a long term watch and wait, while the fact of the weight loss and diet change did keep creeping diabetes at bay and has made for no need to take another medicine (at least still so today). My spleen is enlarged (19cm) and I have internal enlarged lymph nodes that have waxed and waned in size over the years.

None of us can predict what our CLL will do in the long run, we can only take care of our health to the best of our abilities, and live maybe better than we have in the past.

I would be interested in what your diagnosing tests show as a profile for you CLL is. At 39, you have the possibility of a long and slow CLL progression as others can attest to here.

Dan, I am so happy for you; thank you for sharing. Quite an accomplishment, not just for the CLL but your overall health and well-being as well. I tried Keto after diagnosis and felt good but my cholesterol went way high. Even though there are beliefs now that that is ok, I couldn’t take a chance, especially with my family history of heart disease.

Please keep us posted in September and good luck to you ~

NW

I also think it affects different people in difference ways, everyone's body is different and they have different tolerances. My dad was pre diabetic and his doctor bsaid he was eating to much salt. Switched to Keto and now his blood work is perfect and he eats just as much salt. You should bhave seen the doctors face when he told him what he eats. Literally speechless because it goes against everything they have been taught.

Thanks for sharing. Salt is actually essential and healthy, a high carb diet not so much. I also had a pretty dramatic improvement in all my CLL parameters when I quit the carbs. I do miss bread something terribly but the trade off is well worth it.

Have you read Anyway You Can by Dr. Annette Bosworth, MD.? Her mother had CLL and basically Dr. Bosworth studied Keto and intermittent fasting and found the right medical (keto) treatment for her. Today she is cancer free. It is worth a read!

Interesting so what is your weekly diet ol. for a keto Diet ?

DAN1980
DAN1980
in reply to Canuck901

I don't count calories. I eat meat, cheese, eggs, and green veggies. In the morning coffee with heavy whipping cream. Soft drinks that have zero carbs and sugar are ok if they use sucralose. Stay away from aspertine. Truvia and stevia are good sweetners.....

I have been eating Keto, including super fasting, under the careful guidance of a Dr/Dietician. I was chronically fatigued, had poor immune responses and was looking for a change in both those things to improve my quality of life (or I would have given up).

I still get tired but it is at the end of the day now and not all through the day. I feel better and my ALC has dropped and stabilised. As I get bloods done every two months I can see what’s happening.

As an athlete already (albeit weekend warrior) there were just some tweaks to make. I also exercise more than most through my passion on the bike, and while my endurance has dropped I am able to keep going.

I was teetering on not coping with my job (which I don’t want to give up) and now I am coping better. I’ve also moderated my lifestyle to allow more rest and recovery as needed. I believed the LCHF diet is helping with this. 👍

If you feel, happier and fitter on this diet then there is no question in my mind, do what you see is necessary and suits you. 😁

We are all here to share our experiences, but however, we should still remain aware that there is NO confirmed answer out there YET.

I am not one knocking anybody, all advice is there for the taking or not, but I do worry that people spend lots of time and energy looking for answers, tirelessly trying this and that, obsessing over stats and missing the precious time to enjoy what is around us. This is an incurable cancer after all.

Again only speaking from a personal perspective, I would prefer to enjoy the time that I do have left with the “everything in moderation” approach.

At this moment in time I personally am more along the lines of trying to find equilibrium in all aspects of my life, calmness, moderate exercise and a balanced diet, my body cannot deal with extreme changes. I am 51, have been monitored since 2015 (unaware of this) and diagnosed in 2017, currently still at first stage watch and wait. Who knows, maybe this ideal would change were I to be further along with this disease....

I am happy with the NHS in Britain and very grateful for it, regardless of its issues. I trust my consultant and the nurse-led team are wonderful... whilst I have my “concerns” about the Pharmaceutical companies, I would rather not waste head space thinking about something I have no control over.

Good luck in “YOUR“ journey and don’t forget the main thing is to enjoy life best you can.

I am grateful for the platform this group provides for us all to share our experiences, it has been of great comfort on times to know I am not alone.

Stay safe ❤️🌈

My ALC improved by 30 percent and stabilized after moving to a restricted carb diet. I don’t spend time obsessing about statistics when it comes to these things. Having spent my career in clinical research, I do appreciate trial limitations and that the majority of what we can do to impact our health and well-being does not fit well into clinical studies. Evidence comes in many forms.

Doctors rarely advocate for diet or much of anything holistic or natural because, quite frankly, it is not their expertise or business model. Most major medical systems are built on the backs of drug and device companies. When I see my oncologist, I expect our visit to to be focused on treatment options incorporating drug therapy and that is what I receive. I am ok with this as it is my reason for visiting but I do recognize that what they are offering is but a fraction of the possibilities that are out there for helping my condition.

Great! so wbc count went down? how many carbs per day?

AussieNeil
AussieNeilAdministrator
in reply to newyork8

As I mentioned in a reply above, a change in WBC from 16+ to 11.5 is inconsequential. With CLL, we need to monitor changes in lymphocyte counts and these can easily jump around by far, far more than +/5 in much more frequent testing than every 3 months. It's overall trends that are important. See the plots here for real world examples: healthunlocked.com/cllsuppo...

It's actually quite possible that a drop of under 5 in the WBC count when it is near normal, can be accompanied by an increase in the lymphocyte count, (which more selectively counts CLL cells). That's because in a normal WBC count, about 65% of the WBC is due to neutrophils, which can healthily vary between 1.5 and 8.0. Even a 30% drop as reported by flipperj can be unremarkable, as can be seen from the plots in the post I referenced. A sustained drop of that magnitude is much more impressive when your lymphocyte count is 300 rather than 20. What's far more important with CLL is seeing a reduction in total tumour load, so reductions in spleen and node sizes are also what we want to see. We also need to monitor trends in haemoglobin, platelets and neutrophils, as these directly determine our degree of anaemia, risk of bleeding and infection risk respectively.

Neil

Thanks for sharing your experience Dan. This is just inspiration I’ve been looking for. (Plus continuing my meds)

I was on Keto for an entire year (2018). I did not go over 25 carbs a day. My WBC and lymphocytes stabilized that entire period. My spleen increased in size only slightly. Over this past year, my numbers are creeping and my spleen is quite enlarged - may be time for treatment. This post got me thinking that maybe the low carb no sugar diet was a good choice. Going to try my friend keto again and see how it goes. Like Dan, I really started enjoying the diet and I felt great! Thanks for the motivation!!

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