I had my worst blood test on April 15 followed three weeks later (on May 5) by my best blood test in 15 months. The main difference was that my April 15 blood test came after I had been eating lots of fatty foods during the week of Passover. My good test three weeks later came after I cut my fat and oil consumption to almost zero (and also stepped up my aerobic exercise program).
For the scientific basis for minimizing lipids when you have CLL, see the following study:
Sure we should. However there are situations that may need help to get lower lipids, so it isn't as easy as 1, 2 , 3 for some, but the caution is one we would benefit from.
aafp.org/afp/1998/0501/p220...
What causes high levels of fat in the blood?
Most people have high levels of fat in their blood because they eat too much high-fat food. Some people have high fat levels because they have an inherited disorder. High lipid levels may also be caused by medical conditions such as diabetes, hypothyroidism, alcoholism, kidney disease, liver disease and stress. In some people, certain medicines, such as birth control pills, steroids and blood pressure medicines, can cause high lipid levels.
clllady01,
Good point. Not everybody can reduce the amount of lipids in their blood stream simply by eating fewer lipids. The body will manufacture lipids if it doesn't get enough of them in food.
Still, minimizing our consumption of fats and lipids is something that those of us with CLL should try. There are other health benefits from eating less fat, and reducing our consumption of fatty and oily foods could possibly slow the progression of our CLL.
And don't neglect the aerobic exercise. That should be good for you whether you have CLL or not!
BTW 95% of cholesterol is made in the liver. How much of it we eat is immaterial. We are made of fat. Especially those of us who are overweight. Fat can't be avoided. It's essential for life. Carbs are not. Fructose is not. It's a poison. My brain is all fat. 25% of it is cholesterol.
Howard,
I, too, have been looking into cholesterol and cancer (I have prostate cancer in addition to CLL) due to recent research about the role lipids play in cancer progression. My HDL dropped out of range at last year's lab and I saw research that correlated low HDL with CLL.
The article linked below is an excellent summation of the current understanding of the role of cholesterol in cancer progression. It is not specific to CLL, but describes in detail the metabolic functions that are involved.
Influence of Cholesterol on Cancer Progression and Therapy - Translational Oncology,
Volume 14, Issue 6, June 2021, 101043
sciencedirect.com/science/a...
Since neither of my oncologists have ever asked or commented on my lipid profile, it makes me think that this is an evolving area of cancer research. There is evidence of correlation between the use of statin drugs and better outcomes in prostate cancer, but PCa oncologists will not generally write scripts for statins. Many patients are seeking scripts from their PCP or turning to red yeast rice supplements as an alternative.
Thanks for shining a light on a topic that needs more attention. Stay safe - K9
Cujoe,
Thanks for sharing what you have learned about cholesterol and cancer in general. CLL, however, is different from most other cancers. Leukemia cells metabolize lipids during replication the way other cancer cells metabolize sugars during replication.
Most other cancers show up on CT scans because the sugar water you drink an hour beforehand makes them light up. CLL cells don't show up on CT scans.
Howard,
I think if you do a deeper dive into the literature you will find that the old "sugar feeds cancer" adage has been long discarded as universal; i.e. (and this is a 2012 dated paper):
pubmed.ncbi.nlm.nih.gov/225...
Prostate cancer loves fat and the best scans are not FDG-avid CT/PET. Unfortunately for us patients, cancer is very flexible in finding the energy it needs to survive and propagate.
Be Well - k9
It is the composition of cholesterol (as the lipid transport vehicle) that's important. And the ratio of Chylomicrons, HDL, LDL, VLDL, then specifically Apo Lipo A, Apo Lipo B etc. Serum cholesterol levels have little to do with anything. Particle size is what is important. It's complicated. Not all fat is created equal. Not all saturated fat is created equal. Best way to increase HDL=reduce carbs, increase healthy fats. Never mind total serum cholesterol going up. That's actually a good thing. Ok, I'd better stop here 🙄
I found when I cut my saturated fat intake, my total cholesterol went down. I also dropped about 10 lbs. I was at the higher end of healthy weight, but my body fat percentage was too high. Going from 135 pounds to 125 pounds plus the diet changes helped. I do eat a moderate amount of olive oil Omega 6, and some Omega 3's. Most of my Omega 3 comes from flaxseed, a little from salmon. I don't use, and abhor, canola oil. Excess fats as well as carbs contribute to high cholesterol levels
nkch.org/blog/take-the-driv...
Insulin regulates our fat metabolism as well as sugar metabolism. Your body can produce cholesterol, and will do so in excess if you ingest excessive carbohydrates. Those that stimulate insulin extremely, like the high glycemic load sugars and starches, are the worst offenders.
Unfortunately, my HDL/LDL levels were not optimal, even after losing weight, changing diet, and getting my total cholesterol down to 165 from around 225. These levels were worsening over the past 2 years, so I started simvastatin. There is interest/research in hydrophilic statins working synergistically with BCL-2 inhibitors like Venclexta to prevent resistance. Anyone taking any statin (hydrophilic or lipophilic) should also take Coenzyme Q-10 to prevent side effects from the statins, so I take that too. I take the CoQ-10 in the morning, and the statin at bedtime.
After several months, my lipid panel has almost totally normalized. The "numbers" are normal, but a few of the lipid particle sizes within the subgroups aren't totally optimal numbers. Still, I'm pleased that things are moving towards optimal health levels! My total cholesterol dropped again to 141 on the simvastatin. I'll mention I do eat whole fat dairy, and beef. But I cut my intake a good half on the dairy this past year, and I like the leaner beef and chicken cuts. Bacon is my fatty vice, but I eat it weekly at most.
My cholesterol readings guide me to understand that lower total cholesterol is linked to raised all cause mortality in older folk.There is also a male-female range difference.. with women having a higher healthy range.
On that USA scale, my understanding is that up to 240 is healthy in women, up to 190 in men.
Low cholesterol scores are undesirable.. cholesterol has work to do, it is not cause/creator of harms, not at normal ranges, so much as a vital part of our biochem:
Eg.
- carrying other chemicals/nutrients
- repairs (patching damage) to blood vessel defects
- co-factor in the making of many compounds, such as vitamin D
First sign of liver cancer? Unusually low cholesterol levels for no apparent reason. That's what I read somewhere. If our immune system is like a machine gun, cholesterol is the bullet. The body uses up lots of it when fighting cancers. But it has to be the right kind. Diet affects composition. Statins just carpet bomb all kinds. Good and bad. Since they don't remove the root cause of bad cholesterol composition, they are useless. And can cause cancer too. But they sure are a profitable drug to sell.
Oh I agree. I stopped the statin when I got the 141 number. I am trying to change the HDL and LDL numbers. After a statin washout, I will see if those ratios bounce back to the old bad ones, or if that statin slap was enough to maintain the correct ratios, even if I have to rinse & repeat a statin for a month or so yearly.
If you Google the paleo indicator of health you will see its the triglyceride to HDL ratio. The smaller the better. Very low carb diet fixes this ratio in about 3 weeks. Serum cholesterol is likely to go up at the same time but that's unimportant. As long as the serum contains mostly the fluffy large molecules of LDL which are harmless. And on a very low carb diet this is a given. Not to forget. Glycation of lipids can't happen without carbs in the diet And that is how advanced Glycation endproducts are formed. Which cause Alzheimers and other degenerative diseases.
The devil is in the detail, as always. Firstly, what do you mean by a bad blood test? Then what do you mean by a good one? If your triglycerides are low (mine are very low) and your HDL is high (mine is high) , then your blood test is good. Even when your cholesterol is high. Mine is very high. Fatty blood = high triglycerides = high fructose consumption. Check the latest videos with Dr. Robert Lustig on how fatty liver is the mother of all health problems. And it's not the result of high fat consumption. On the contrary. BTW one can be thin and still have fatty liver. Some who are overweight do not have it. Most who are overweight or obese do have it. It all depends from the composition of our diet. Spoiler: Cut out all fructose from your diet = cure fatty liver.
LeoPa,
By bad and good blood tests, I was simply referring to the observed number of cancerous lymphocytes in the blood test:
1. Bad blood test: A blood test with higher WBC and ABS Lymphocyte counts
2. Good blood test: A blood test with lower WBC and ABS Lymphocyte counts.
The two statistics go up and down together because, as a CLL patient, almost all of my WBCs are ABS Lymphocytes.
Howard
Howard, in the space of 3 weeks your WBC and ALC count changed so much that you consider it relevant and suspect it was due to a dietary change? Can you be more specific and post the before and after numbers?
LeoPa,
Here are my numbers from my last 4 blood tests - First column is date, second is ABS Lymphocytes and third is WBC:
09/30/2020 - 84.2 - 94.6
01/06/2021 - 88.0 - 88.6
04/15/2021 - 93.1 - 101.2
05/05/2021 - 78.4 - 86.3
Passover week, when I ate fatty foods every day for lunch and supper, was March 25 to April 4. During that week, I felt my bones vibrating, which I attributed to bad lymphocytes replicating within them, due to all the fat I was eating.
Of course there are other explanations of my bad blood test on April 15. Here are two of them:
1. I resumed daily running on April 3 after several months with very little aerobic exercise. Doing so could have pushed my white blood cells out of my lymph nodes into my blood stream.
2. I took the Moderna COVID vaccine in two doses - 4 weeks apart. The second was on April 6. Vaccines can tell the body that it needs more white blood cells.
Howard
looks like you are better off not eating what you ate during passover week. were those meals carb free? carbs are a confounding factor. mixing fats, especially unhealthy fats like seed oils with carbs is worse than not having fats at all. It's not the fat in the hamburger meat that is dangerous. It's the bun and the seed oil they fry it in.
They were not carb free. I always eat a lot of carbs including rice, bread, oatmeal and maple syrup. Normally I eat low fat meat and my only dairy is yogurt from non-fat milk powder.
We've also got to remember, there may be occasional "die offs" if a bunch of lymphocytes finally die at the same time. Until it happened to me, it wasn't on my radar. Now my neighbor with CLL is all excited, he recently had a die-off after changing his diet, but he also recently had an end to a stress-inducing time period that had jumped his ALC!
What specific types of fats are involved in all that Passover food?My approach to these matters - my ‘rule of thumb’ - is:
- avoid seed oils [too processed, high in inflammatory omega6, too easily oxidised/rancid.. etc]
- cook with more saturated (heat/chemistry stable) fats, such as animal fats, coconut oil, palm oil
- flavour with olive oil
- use butter too, not vegetable margarines, else dip bread in olive oil.
The main fats were from a fatty fish and a fatty chicken soup - both of which are typical Passover dishes (gefilte fish and Matsa ball soup).
Fatty fish - somewhat depends what it was stuffed with!Chicken soup is presumably made fatty with chicken fat?
The only problem with chicken is that it tends heavily towards omega6 rather than omega3 fat.. the likelihood is that our modern diets are lacking omega3 — that we get the balance of these fats wrong, where omega6 is deemed inflammatory.
It suddenly occurs to me / I am reminded .. how unsettling lymphocyte blood numbers can be..
CLL’ers typically get a gradual rise.. some may have 200,000 - 300,000 without this being reason to treat.
Whereas..
SLL presentation, of lumpy lymph nodes with normal lymphocyte count to start, may look to need treatment for those lumpy reasons long before lymphocyte count rises far.. This was my situation pre-treatment; then I had steroids to treat PE (pulmonary embolism) and my lymph nodes ‘emptied’ in a space of 2 weeks.. my lymphocyte count went from 70,000 to 270,000 just as treatment began.
My point is how this journey tests us — the watch and wait, sometimes on edge, more so at consult times, then through treatment, and hopefully remission, and, afterwards, some amnesia of all the prior ‘excitement’
Naturally we wonder how we can influence our CLL progression while the numbers wobble or rise..
The main lesson seems to be to get on with living, to lean towards a ‘healthy’ life — get good sleep, find a better work-life balance, learn to relax, eat a balanced diet, try to get in better shape and a little fitter.. look after our kidneys and liver, as these matter for treatment drugs.
[there does not seem to be some magic approach, though I try to live/eat in a less stressed way, eat a less inflammatory diet.
Shedman,
You wrote, "my lymphocyte count went from 70,000 to 270,000 just as treatment began." That rapid rise occurs when bad lymphocytes are replicating like mad within lymph nodes. I'm hoping that minimizing lipid consumption could starve my lymph nodes of lipids and postpone that rapid rise as long as possible.
Maybe if you had greatly reduced your use of saturated fats, stopped flavoring with olive oil, and stopped using butter during that critical time period, you could have postponed that rapid rise.
* I've stopped using olive oil in my salad dressings. In fact I use pickle juice as my salad dressing which gives me the vinegar without oil. (Slicing a pickle into my salad is delicious.)
* When I cook with oil, I use much less than I used to, and I often eat soups or tomato sauce dishes that have no oil whatsoever.
* I never use butter or margarine, not even on my bread which I often eat toasted with low-sugar strawberry or raspberry jam.
* I eat a 1/4 cup of popcorn as my evening snack with no added oil. I pop it in the microwave in a silicon container and I add salt, but no other flavorings.
There are lots of ways to minimize lipid consumption. Doing so could possibly postpone the rapid rise in my lymphocyte counts and extend the "watch and worry" stage of my CLL.
Howard
Simply, no!
As I tried to explain: my presentation of CLL is the SLL form: lumpy lymph nodes.. my blood score for lymphocytes was close to normal in spite of being lumpy ‘all over’!
Treatment with steroids led to my lymphocytes exiting my lymphatic system in a very big way.. this over about 14-18 day..
So, no, my CLL cells were not replicating from 70k - 270k in the span of 18 days.. they were simply entering my bloodstream out of lymph nodes. The joy was of timing: they emerged just as B+R chemo started.. alike ‘shooting ducks in a barrel’, if you will..
CLL - SLL : same disease.. somewhat different presentation.. with some statistical differences, variously..
—
Attempts to starve our CLL cells via dietary measures are doomed — so far no one seems to have found such an approach to work.. plenty have attempted.
Sometimes this approach can work for certain solid tumour cancers; a cancer may respond to being starved of carbohydrates, for instance.. but our CLL seems likely able to feed from fats or sugars..
The approach with more, though limited, merit, is of things that speed up apoptosis of CLL cells.. You will have seen discussion of factors related to green tea, though the evidence is limited and there are health warnings associated, of toxins in many teas if taken to excess, with impact on liver, etc etc. - this is discussed in previous posts.
But these CLL cells are very resistant to apoptosis (cell death), with multiple mechanisms to avoid it.. This is our problem.
You might consider trying intermittent fasting — it may have other health benefits regardless of whether it improves our CLL.
Trust that the starving approach has been tried.. it does not work.
Everything we do also influences cell line evolution — puts selection forces to work.. that this is complex and that there are sadly no easy answers.
As LeoPa points out, fats are a far healthier nutritional source than carbohydrates.. fats carry all manner of vitamins, where carbohydrates carry risk of diabetes.
Aim for a healthy diet.. less carbohydrates, perhaps, less refined foods (avoid seed oils, less grain,..), and more of green veg, herbs..
Seek good sleep and good sleep habits.. learn to relax properly and regularly.. take more exercise, take up hobbies, avoid work stresses.
Establish a routine that mitigates infection risks, that includes some health monitoring (temp, heart rate, blood oxygen), possibly via a health device like BioStrap.. so that this no longer causes stress.. ideally, so that watch and wait is no longer constantly on your mind.
I found hypnosis was very helpful to achieve deep relaxation.
Sorry. It is something the active enquiring mind is bound to search for.. the means to influence progression of CLL.
Steadman,
Thank you for your wisdom based upon long experience. I apologize for having mis-understood your last post. I am not familiar with SSL. I have only researched CLL.
If I understand your last post correctly, you were pointing out that the bad lymphocytes were building up in your lymph nodes without being present in your blood stream. My CLL has been different, so far. My doctor checks my lymph nodes every 6 months. When she last checked (in January), they were fairly normal in size.
Howard
Thanks for this thoughtful post, Howard! I had my highest numbers yet in February. Over the past year I have been eating a LOT of nut butters. A whole lot. This gives me a motivation to see if reducing that intake will help my lipids and my lymphocytes. And since we are discussing nutrition. I'm pretty sure that eating broccoli several times a week makes my lymphocyte numbers go down. I eat a whole foods plant based diet, but can eat 1/2 pound of nut butter in a day. Wishing you well!
Astro617,
Your idea that Broccoli helps fight CLL has some research support. Broccoli and other members of the cabbage family contain sulforaphane which has been shown to have some anti-leukemia properties:
Thanks Howard! This is great info. I'm going to do more research (there's lots of articles about it!) and make sure I eat something with sulforaphane every day. It feels good to know there is something we can do to fight CLL and other cancers in addition to just eating healthy and living a healthy lifestyle.
Betcha your doubling rate is lower than mine :-)
Minimizing the risk of infections
Should I have a blood test
YOU, are the medicine for your fatigue!
