Just recently been told I have CLL. Has anyone followed a ketogenic diet to combat this disease?
Ketogenic Diet and CLL: Just recently been told... - CLL Support
Ketogenic Diet and CLL
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Laramee
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Whilst I am aware that this diet is used to help epilepsy in children I can find no details that it is useful in cll.
You will find numerous posts on this site about diets.
There are many scam diet claims none of which appear to be based upon research or proven facts.
An all round healthy diet appears to be the recommendation from medics and nutritionists to ensure we keep as healthy as possible. Of course, a nuetropenic diet has recommended when patients have low nuets as a Safetey precaution but be very careful not to follow fad diets that can affect the performance of cll.
NewdawnAdministrator
You know Laramee, I found myself exploring a ketogenic diet after my diagnosis but further fuelled by my diabetes dx. The keto diet features heavily for discussion on the diabetes forums and many use it successfully because carbs are the main culprits in hyperglycaemia.
However, the keto diet is hard to maintain indefinitely and at the risk of being shot down by its devotees, I’m not convinced it’s not without resultant health implications. I tried a very low carb diet and lost weight and controlled my diabetes. However, it had no impact on my CLL progression at all which disappointed me.
I would find a keto diet hard on my kidneys because along with being high in meat, the ketogenic diet also limits fibrous carbohydrates that help promote gut health.
The ketogenic diet only allows for non-starchy carbohydrates such as spinach and kale to be eaten. I found that constipation ensued and my eGFR dropped slightly showing renal stress.
Over the years in being surrounded daily by diabetics particularly who are looking for the right diet, the most successful I’ve observed have been low carbers and people on balanced diets. I remain unconvinced by the long term viability of more extreme diets and personally the keto diet isn’t for me.
However, a healthy balanced diet low in carb, processed foods, sugars and junk is what we need to keep our bodies in shape for the rigours of CLL. That and as much exercise or movement as we can manage.
Best wishes,
Newdawn
I found this 2016 paper
ncbi.nlm.nih.gov/pubmed/266...
which showed that CLL cells are unlike normal B cells and unlike other leukemia cells in that they can store and burn fat.
Sadly, that's probably why keto diets are not effective against CLL even if they have some use against other cancers.
(I think someone posted the above paper here a while ago but I can't find it.)
Bill
While much of what you said is true there is a large misnomer about keto being "high in meats". It is high in fats, but when done properly, the fats should predominately come from good fats: Avocados, coconut Oil (MCT Oil), Olive Oil, Omega 3 sources, Ghee Butter, Hemp seeds, nuts, etc. and the moderate protein can come form many sources, including some plant based protein powders which have very little to no carbs.
So I am not advocating anything for anyone, but I will share my story for reference. I was just diagnosed with CLL/SLL three months ago (2019). Most my labs were normal, Lymphocytes were 5.2 (slightly high).
I've definitely had disease for a few years. All of 2018 I stayed on a Keto diet (not knowing I had cancer). My lymphocytes stayed about 5.2-5.4.
Fast forward to diagnosis day. I immediately went on a strict plant based whole food diet. Within 2 months, my lymph counts went up a whole point to 6.4.
I'm now back on keto, but the healthy version I described above also cutting dairy.
Will know soon if my theory is correct.
Everyone is their own truth, experiment and be the best you!
Glad to hear you’ve found what works for you kristopherross.
Newdawn
What I've read is that cancer cells have many glucose receptors on them and that need glucose a fuel. At the same time they have no way to convert ketones, which are produced in a low carbohydrate diet as most normal cells in the body can. The result is that they starve and die or at least don't propegate. I going to give it a try. I'm open to any and all info. Please and thank you.
The diet I am increasingly drawn towards and have read promising benefits from in terms of impact on cancer cells and immunity is the 5-2 Intermittent Fasting Diet. It’s worth exploring but take medical advice before embarking on any diet.
healthline.com/nutrition/th...
healthline.com/nutrition/10...
Newdawn
You might find this previous discussion on this topic of interest: healthunlocked.com/cllsuppo...
There are also these related posts from site search: healthunlocked.com/search/f...
Make certain that any information you plan on using to try and combat your CLL is from reputable sites and as specific to CLL as possible. Research related to general cancers may, or more likely, may not translate being applicable to CLL, which is a slow growing cancer. Even leukaemia research should be specific to at least the lymphoid stem cell line from which CLL originates and not the myeloid stem cell line. CLL is one of many the B-cell Non-Hodgkin Lymphomas and we know from clinical trials that drugs that work well for other Non-Hodgkin Lymphomas don't necessarily work all that well for CLL.
Neil
Hi Larmee,
I have CLL/SLL in my ninth yr. I have best oncologist & helps being RN.
With the type of cancer we have the naive cell that has transformed to cancer cell will not die. This frustating... but true. Even our killer TCells cannot kill them, why?
They are smart... they have a type of cloaking device where the T cells can detect them.
Only choose for us right now is a drug called Umbruvica, it turns the cells off. Still there but dont crowd out normal cells.
As you know there are type dependent on chromosomes... 11 [most common], 17 can be very persistant hard to control, 13, and 12(can be intermidiate). Find out what you have start there.. there are a lot of new drugs. Dont forget to check the FDA site for black box warning... i took Rituxin 4 ys. I now have hypogammogoblimia... d/t this drug. I now have IVIG Infusions each month.
Sending prays your way.
Hi Laramee,
It's now 10 months later (Oct 2018).
If you tried the diet what results did you see?
Thanks,
Bill
Hi Bill.
I haven't done any testing to prove that anything has changed in the progression of this disease. I do however see a reduced level of fatigue (significantly), superficial lymph nodes are so much smaller I cannot feel them. Of course there was an initial weight loss of a couple of pounds. But overall I just feel better when I'm eating this way. I slip back into my regular eating pattern from time to time and when I start feeling g crappy again I go back to keto.
Laramee
I think lymph node size and fatigue are two good markers so it sounds like you had some success.
I'm in a one or two window before I will have to start treatment again which seems like a great time to test the keto diet and see if it works.
How long from the start of the keto diet did you notice the node and fatigue changes?
Bill
Less than a week. Probably about day 3 I started feeling much better and by the end of week one almost no symptoms.
Good luck with it. All the best through your treatment phase.
lankisterguyVolunteer
Hi Laramee,
Among the Pinned Posts on the right side of your computer screen is this post that has very good information:
healthunlocked.com/cllsuppo...
And the box labeled "Related Posts" on your screen may include this one:
healthunlocked.com/cllsuppo...
And for similar postings, using the search feature at the top right of your page should give you this list of several discussions on the subject:
healthunlocked.com/search/k...
Len
Thank you.
Can anyone tell me,. If you know...is a bone marrow test required in the early stage of this disease?
lankisterguyVolunteer
Hi Laramee,
Less experienced doctors may want a CT Scan and Bone marrow biopsy soon after diagnosis, but most of the top CLL experts will not need them to give you good guidance.
The thinking is that up to 30% of CLL patients never need treatment, and watch & wait without testing beyond blood tests has proven to be the lowest risk for the patient.
Bone marrow biopsies & CT Scans are used to diagnose causes beyond CLL, if your regular tests and exams uncover strange results. But delaying treatment and invasive testing until needed is the preferred route under most published guidelines.
See this Pinned Post - on the upper right side of your screen for more info:
healthunlocked.com/cllsuppo....
Len
If you have discordant blood results such as very low platelets and only a low level of lymphs/+- lymph nodes then you may need a BMB to establish if the thrombocytopenia is due to ITP (probably due to CLL) or bone marrow failure. Treatment will then depend on the BMB results.
If everything looks 'typical' then it's as lankisterguy described.
that's great information. Thank you.
I take an integrative approach. I use the best CLL specialist I can find and I also swear by a macrobiotic diet. The diet has worked wonders for me. I dropped 50 lbs and it stays off with no effort. My red blood cells and platelets have all actually gotten better(improved) and although I have had CLL according to my doc, since at least 2012,my ALC has stayed relatively stable and actually went slightly down on my last blood test. Official diagnosis for me was in Jan.2016 where my ALC was 10.4....last test in October of this year, it was at around 19. Dr,Wierda ,the well known CLL researcher, recently explained that he felt there was something to certain anti-cancer dietary regimens. He said this for all the world to hear during a Patient Power interview this year! One of his patients actually went into a remission which he credits to her special dietary protocol. He didn't go into the name of the diet. So if he's open minded to the benefits of eating a healthy diet,I certainly see no reason to not be open minded. I had all the classic CLL symptoms and some! ....and they all went away. I credit diet,exercise and mindfulness to helping. I have absolutely no CLL fatigue. I am trisomy 12+, have a BCL -2 gene translocation and I am Zap 70+ unmutated. At age 64, I still work 40 hrs a week and jog or walk 2-3 miles almost every day. Diet alone,may not cure CLL...but if done intelligently..it will relieve a lot of CLL symptoms in some people and I believe may slow disease progression in others. I also believe that eating foods that are rich in vitamins B-12,A,D,K and folate are essential to CLLers. And we should also eat foods that give us zinc and selenium. These nutrients all play a vital role in developing blood cells and enhancing immunity.
I used to follow macrobiotics many years ago and used Michio Kushi's books for reference. Do you have reference material that you like?For someone just getting to know MACRO....these are good books: Simon Brown's ....Modern day Macrobiotics and Denny Waxman's ...The complete macrobiotic diet. Kushi's, The Cancer Prevention Diet was very interesting,too. Frankly,I don't necessarily practice Macrobiotics in the same sense that most people use it just to maintain good health and to stave off disease. I still use quite a few supplements that would not be considered macrobiotic in nature. So much has changed though about Macro,that even the best Macro healers often embrace totally different viewpoints about the flex abilities of the protocol. I know one thing,I tried every diet to see if any would affect my platelets and macro was the only regimen that truly improved them. Also it was the only diet that a medical doctor thought might help me,because he had other patients that somehow saw great health improvements on the diet. He kind of reluctantly had to embrace it,even though his training said it couldn't really be doing what it was doing for some of his patients. The spiritual aspects and the yin/yang doctrine are aspects of the regimen that I still don't quite master. But if you research the foods that are used,they have so many anti cancer nutrients in them and they are so full of vitamins and minerals that seem to be blood-centric,it's really very interesting. Kushi himself was the bad boy of MACRO! And although he's credited with popularizing the regimen worldwide and he truly believed in it,he was constantly on the road and he admitted in one of his books that he simply couldn't always maintain his macro practice for himself ,properly. My counselor actually was mentored by Michio. I absolutely love the science behind Macro. It reminds me a lot of the anti-angiogenesis diet that is being looked at by the medical field,where by certain foods simply have chemical reactions that make it impossible for cancer cells to travel and harder for them to proliferate. I do not look at Macro as necessarily being curative for CLL...I see it as away to possibly slow disease progression,relieve some symptoms and to strengthen one's body, so that you can feel better and live a healthier life.
Hi Laramee,
I am a fan of ketogenic diets (very low carb, moderate protein, high fat) and follow one myself because I am carbohydrate intolerant, was pre-diabetic, and was having hypoglycemic symptoms frequently, even though I was on a lowish carb diet for years. It has stabilized my blood sugar, and now I don't have to be eating or snacking every 2-3 hours. My husband is diabetic, had high triglycerides and cholesterol, all of which vastly improved on this diet, although he is not as strict as I am (he sometimes has trouble resisting goodies at work). The diet may also be helpful for epilepsy, Alzheimer's, Parkinson's, MS, and certain kinds of cancer. Unfortunately, I have not seen any indication that CLL is one of them. If you are interested in researching, I recommend Keto Clarity, by Jimmy Moore, The Art and Science of Low Carb Living, by Volek and Phinney, and Google Dr. Eric Westman of Duke University. This is not a high protein diet, will not damage your kidneys. You can eat lots of low carb veggies and some berries. The healthy fats will nourish your brain.
I am on a Vegan diet. I know others that have had good results with that. The book N of 1 discusses that as well. He had CLL.
Dr. advised statins for BP in March 2017. I'm male 78, sedentary, live alone. So I went on keto diet 10 months ago to lose weight, and lost 35 lbs, 214 to 179 in 5 months. Lost 6 inches in waist. BP went from 145/90 to 120/80. Lipids went to normal. Aches and pains disappeared.
Could breathe and sleep much deeper and better. Energy went up, and mental focus increased. BMI now perfect. I supplemented with fiber, magnesium, CoQ-10, vitamins D, E and B-Complex, fish oil and probiotics per Drs. William Davis (Wheat Belly), Permulmutter, and Mercola. Carbs never exceeded 20.
I only have a microwave and toaster oven. Now on maintenance I use olive oil instead of coconut oil. Most carbs come from salad, nuts and frozen green veggies. I also alternate daily between frozen mixed berries and V8 juice. I buy eggs, microwavable frozen COOKED meats, i.e. bacon, Italian meatballs, wings, thighs, ball park burgers, fish sticks, fajita steak and chicken. I also buy canned salmon. sliced cheddar cheese, celery sticks and cream cheese, pork rinds, chunky peanut butter, sugar free jello and sugar free dark chocolate. I also buy artichoke hearts, marinated mushrooms, and olives in jars. I stay hydrated. I average 1300 calories daily. Carbs never exceed 40.
Blood tests now show everything normal levels (kidneys, heart, lipids, liver).
Diagnosed with follicular lymphoma with 13Q deletion at Emory Winship in November 2017, probably had it for 5 years already. Emory Winship Nutritionist advised I stay on keto, as my vitamins/minerals levels and BP bode well for B/R treatment starting this month.
Notwithstanding my FL diagnosis, it feels good to have no belly fat, and not to suffer depression or hypertension. I take no meds at this point.
I have read many many posts on this board, and have much sympathy and empathy for sick patients here; I also appreciate those sharing results and providing helpful support for others.
I believe consuming complex carbs not simplex carbs is the way to go. No sugar very limited red meat , more fish omega 3s and spicy food tumeric, Garlic and only nut milk is the way to go. Lots of nuts and seeds , hemp seeds for protein and an iron supplement and leafy greens such as kale and Swiss chard , organic brown rice
An internal medicine doctor wrote an entire book about her mother, who was diagnosed with CLL, and using a ketogenic diet to help combat the disease. It’s called “Anyway You Can.” I follow a ketogenic diet (minimal carbs, moderate protein, high-fat), and I have no problems sticking to it. In fact, if I eat sugar now, I feel awful. Best of luck to you.
I went from stage 3 to stage I when I switched to Keto. Labs in September will confirm or deny that it was the diet as I have stayed strict to it. Started in January had labs in March. Almost near normal levels in the March labs.
Hi Laramee. I just saw this post. How was your experience with Keto? Did you really try it? Not just some lame low carb but high fat, moderate protein and nearly no sugar. For how long? Did you see any promising results? Cheers, Leo
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