Hoping for some information from the wise ones here - back in January my GP said she wanted to start me on a statin as my cholesterol was high. I said I preferred to try to bring it down myself rather than with medication (and my intent here is not to start a debate on statins - I just prefer a natural approach when possible!) She was very supportive and suggested I start the Mediterranean diet, which I have followed for the last almost 5 months. As you can see from the numbers below (first number is blood test in October, second is today) I have made significant progress lowering total cholesterol, triglycerides (both now in the normal range) and have reduced my LDL (still above normal) but my HDL has also gone down, leaving my ratio the same. Disappointing to say the least. I tried to find information about how CLL affects cholesterol and found several studies that show a significant number of people with CLL have high LDL, according to one study, as high as 75% of patients. Couldn't find anything about HDL, and quite frankly found most of the studies difficult to read and understand. Seems to me since my blood is, in layman's terms, already wonky it probably affects everything! Hoping my doc will allow me to continue this path - for what it's worth I'm loving the Mediterranean diet and feel great! Any thoughts are much appreciated!
Total 223 187
Triglycerides 161 115
LDL 154 133
HDL 37 31
Chol/HDL ratio 6 6
Kathy
Written by
Kbcjones
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That's the thing - I AM making good choices. I have given up sugar, processed foods, all refined grains, dairy (except for a little cream in my coffee). I eat seafood at least 4 times a week and lean poultry, occasional lean pork, and tons of fresh fruits (especially berries) and vegetables and nuts. I snack on hummus with veggies and multiseed crackers or crispbread and avocado. I have oatmeal 4 times a week. And I watch calorie counts and have lost 10 lbs. I walk 2-3 miles at least 4 days a week. I'm doing everything right and the fact that everything has dropped means I am on the right track - except for the HDL. I haven't spoken to my GP yet and hope she has some answers. Also will see my hem/onc in July and will get his opinion.
Do you ever watch PBS? They have a "Sit and Be Fit" program that's shown on many affiliates. If you do some of these exercises vigorously, they can be as aerobic as fast walking. And they utilize the arms as well as the legs.
There are also videos on You Tube. Perhaps some exercise utilizing upper body more than walking does, may be the final "boost" that gets that HDL to rise! Unless you have the genetic thing, I am told increasing exercise to 60 minutes a week of moderate aerobic is recommended. IDK if you pump your arms hard while walking, to make it more aerobic. I prefer to just walk with my dogs, and get aerobic elsewhere.
It's great that you've been proactive with your health by following the Mediterranean diet, and it's awesome that your doctor supported your choice! Regarding CLL and cholesterol, while CLL itself might not directly affect cholesterol levels, some related factors like inflammation could influence them.
Though research on CLL's specific effects on cholesterol is limited, it's common for chronic conditions to impact metabolism. Some studies suggest CLL might raise LDL, which could affect your cholesterol profile.
While your overall cholesterol levels have improved, it's disappointing that your HDL decreased. HDL is important as it helps clear "bad" cholesterol from your arteries. The Mediterranean diet is generally good for heart health, but everyone's response is different.
Keep in touch with your doctor about these changes. They can offer insights into why your HDL decreased and whether CLL might be involved. They might suggest further dietary tweaks or lifestyle changes to help.
Remember, cholesterol is just one part of heart health. Things like blood pressure and inflammation matter too. Keep up the good work with your diet and stay connected with your doctor for your overall well-being!
unfortunately, for most part HDL is hereditary and you can thank your parents for it. In some cases you might increase it with rigirous cardio. I was able to increase mine for a short time by climbing 4000 steps daily but I damaged my knee in the process
I have had high cholesteroland was on statins well before my CLL diagnosis in 2008. The doctor took me off statins around 2017 I still have slightly high cholesterol HDL and triglycerides The doctor now wants me to change my diet to cut down carbs cheese biscuits and. bread. Whether I can do it to a great extent is another matter
I don't think that cholesterol levels have anything to do with CLL. Please check my bio, posts and comments to see my take on cholesterol and statins. This topic is very complex and cannot be answered in a short reply to a post. You have your work carved out for you if you want to immerse yourself in it 😁.
I want to add one other thing, I was in your situation, but mine is hereditary and I have been taking Zocor for years. It helps, but l still have to exercise and eat healthy……Listen to your doctor 😊
i just had the same diagnosis and am doing the same with diet change. I also have a wee bit of osteoporosis so I need the calcium. Did you give up sugar? That’s my big challenge. Keep at it, I guess!
Up until the Manitoba study indicated a decrease in the number of people expected to get CLL correlated with lipophilic statin use, I too wanted to use only dietary & exercise changes to manage the lipid dyscrasias that started after my CLL diagnosis.
Doctors had already ascertained CLL is a lipid-loving cancer, and CLL patients who were put on statins has an increased/longer time to first treatment. So a longer W&W.
But I personally have chosen to hedge my bets, and take a moderate dose lipophilic statin (simvastatin). There's an interesting study ongoing, where a lipohophilic statin is being used in conjunction with venetoclax to see if/how the two may be synergystic. Structure activity relationship software modeling indicated that a lipophilic statin may possibly be synergistic, and these people are running a study.
Hey Kbcjones! Great work on your cholesterol reduction. I too had high cholesterol and LDL (222/135) and my doctor went on about starting me on a statin. I too insisted on trying reduction myself and was very successful with the mostly plant-based Mediterranean diet AS WELL AS an big increase in my daily fiber intake from about 15 grams a day to 60+. I accomplished this by the usual vegetables as well as added chia, psyllium and high fiber non-gluten wraps. When reading food labels, "fiber" took on a bigger significance. Remarkably, in just 3-6 months, my total cholesterol went down to roughly 105 and my LDL to 56. Hope this helps.
Hi Kbcjones (Kathy) - Interesting post especially given you are a longtime (congrats?… I’d say so) W&W Stage 0, CLL q13 (assume mutated?) as I am too (only I’m a short timer compared to you, 4 years on W&W q13 Stage 0) …. and your Lipid panel numbers are nearly identical to mine until I started statins in 2020.
Then the bad lipid numbers ALL changed for the better.
Here’s my thought (in a story form) you asked for regarding cholesterol n CLL:
My cholesterol numbers battle going back from 2020 to 2005 entail moving the numbers you have very little despite going all the non statin things my PCP suggested me to do … 1. Exercise, especially weight work,… always have consistently done a ton of exercise in my life! 2. Diet cut down the nasties like sugar, bad carbs, etc and yeah try Mediterranean diet… check we eat a mostly all organic n healthy style diet , 3. Get to or in my case keep your weight at right spot, and more.
Well as I said did all that and the dang numbers didn’t budge. Finally, my PCP had me get a specialized blood work tests for detecting genetic sources of my lipid problems n that test (sorry don’t recall if it had a name) found I did have bad genetics (genes?) that are a big reason why no matter what I did “naturally” to lower my lipid numbers my gene makeup said “sorry pal that don’t move the needle”.
About that time, 2020 came: dx with CLL q13 mutated Stage 0. Also , SAME week (go figure!) I get a TIA n my first ambulance ride to an ER.
Good news was the TIA did not result in brain or heart damage via scans etc. But the neurosurgeon I saw afterwards put me on 80 mg/day Atorvastatin to conquer my bad LDL (constant 140’s scores) n other bad lipid panel scores.
Immediately, statins conquered my bad scores! Been well within normal ranges across Lipid panel the past 4 years n still taking that hi statin dose. Most recent panel was Oct 2023 - Total 110, HDL 50, Triglicerides 67, LDL 46, Chol/HDL ratio 2.2, non HDL Chlor 60. Before statin use (2005-2020 era) my numbers were generally double (or in LDL case triple higher!), with HDL the exception … it’s now been higher (above 40, between 50-60) since statin taking.
Because of my stroke like TIA n family history of horrible heart conditions (many members had early heart attacks, one unfortunately died at age 49 per heart attack, yikes!) … my heart concerns trumps my CLL concerns bigtime. Hence statin taking is a necessity to keep my cholesterol within normal ranges to help from getting a stroke or heart attack.
CLL (for me) had nothing to do with my cholesterol numbers, they were bad before CLL ever cropped up.
Read SofiaDeo’s research article about statin useage “ increase” the time for W&Wers for first treatment, hey that’s good news, thanks for sharing that SofiaDeo!
For me, it’s all about getting cholesterol under control via statin use so I don’t instantly die via a heart attack or get a bad stroke.
That’s my personal decision. Statin side affects for me have been near nil.. so since I tolerate them well, it’s been a good decision all around taking them. They worked like magic … unbelievably n after battling via trying “natural” remedies to lower cholesterol for 15 years (to no avail) n later finding out my “bad cholesterol genetics”…. plus my TIA “wake up story”… statin use was my ticket towards improving my personal health situation. Just recently my cardiologist recommended I continue to take statins (n my CLL specialist also concurred to continue with statins) after a successful battery of cardio heart tests showed my arteries n valves are good, hanging in there, no stent work needed, whew! But… always talk with your doc(s) and see what’s right for you to do. Maybe taking statins is …. or …. maybe not. It’s an individual situation and we all have our uniqueness situations, right?
Hope I didn’t bore you with my long story but you asked what we thought. Hope you find a way towards lowering your lipid numbers…. n Good luck Kathy!
I think you misunderstood, statin use *increased* time to first treatment. This means a longer W&W, not a shorter. If the time to first treatment is 4 years instead of 3 years, that increase is desirable. I'll edit my post to make this clearer, thanks!
Thanks for the clarification SofiaDeo. I was a bit confused on the tables noted in that research. Appears first couple tables indicated a longer time to first treatment but Table 3 a shorter time? Or did I incorrectly interpret Table 3 data?
Anyways, I went ahead and edited my reply per your recommendation cus I trust your wise advice greatly!!!
Reread Table 3. Time to first treatment in that study: people with no statin was 36 months, those who started a statin had a longer TTFT at 74 months, and those who had some previous statin use are in the middle at 45 months.
I look more at the Conclusions sections, when several studies are lumped together. The larger numbers of patients give a more statistically significant idea of any actual differences. The tables illustratate the data from each study, but when subsections of a study have fewer that 100 patients, the absolute numbers of those subsections are not as likely to reflect reality. Combining several studies to gey a larger data pool gives a better idea of what these numbets are in larger populations.
"Of those requiring treatment, median time to first treatment (TFT) was 48 (IQR, 24-85.3) months. TFT was significantly longer with statins (57.5 (IQR, 32-77) vs. 36 (IQR, 11-100) months, p<0.02. Initiation of statins following diagnosis of CLL was associated with further prolongation of TFT compared to those on statins at diagnosis (74 (IQR, 62-96) vs. 45 (IQR, 30-64) months, p<0.02). Two cases of spontaneous remission were noted with statin initiation. (Figure 1)"
Lipophilic appear to confer more benefit than hydrophilic; I decided to try those first (that class is noted to have more side effects overall since they permeate throughout the body) before switching. I reasoned the more "total body effect" was more likely the reason behind the noted benefit, as opposed to hydrophilic statins which are more confined to the liver.
Thanks to all for your responses and good information. I need to have a long talk with both my GP and my CLL doc. (My former GP used to call him and discuss my situation often - I'm not that lucky now.) I will follow up when I get their opinions. Right now I'm just going to be proud of the progress I've made so far!
Non-CLLer here (wife of CLL patient), my cholesterol levels are high as well. I cannot tolerate statins (insomnia, suicidal ideation). My doctor suggested I get a coronary scan to assess my risk of heart attack. My risk came back zero. I have been making a concerted effort to eliminate dairy… I am a vegetarian. I hope you can get a better perspective on potential adverse health risks from your doctors.
I've been on a statin for a few years.....didn't question it since I trust my doctor to give me what I need. She's a lot smarter than I am....lol.
But my blood sugar has been slowly rising to the point of knowing I needed to do something about it or I'd have to be medicated, so I, too, have been loosely following the Mediterranean diet and increased my walking. I've lost 12 lbs over the last 3 months and have pretty much eliminated refined sugar from my diet. I do a lot of baking, and I've even managed to be able to bake for others and not overindulge myself (usually just a little bite to make sure it's edible). It gets easier the longer you stick to it. BTW, I've been on Ibrutinib for almost 6 years.
Good for you! It does get easier - I can avoid sugar now without a problem now that the "habit" is broken. Here's a little tip for a great treat - a couple of dates with a tiny smear of peanut butter and a little square of dark chocolate (all 3 recommended on the Mediterranean diet)!
Blood sugar is what I am most concerned about with statins. Both my mother and sister were diagnosed with type 2 diabetes within months of going on a statin. It's a known side effect. A big reason why I want to do this on my own. I'm going to keep going with what I'm doing - appointments with both GP and CLL specialist in the mext two months.
The thing about statins and diabetes, is that the *risk* is increased. This includes people who won't change their diet, stay overweight, don't start or increase exercise. Are your mom and sister eating the same diet as you, and doing the same exercise?
Even some patients who develop diabetes on statins, may need to stay on them anyway. It depends on your personal overall risk. We tend to get diabetes as we age anyway, statins or not.
"More importantly, the strongest predictors of whether a patient will develop diabetes mellitus (regardless of whether he/she takes a statin) still include older age, increased weight, and higher blood sugar levels before statin use. Statins may be simply unmasking diabetes mellitus that would have developed anyway based on these other very important risk factors."
I've noticed my fasting blood sugar has risen a few points in the past few years since starting them, but my hemoglobin A1C is still normal. I too, like you, are not eating a heavily processed, sugar laden diet.
Why not start with a low dose? I started with 20mg simvastatin, but dropped to 10mg with the venetoclax interaction. A year after stopping the V, I am bumped back up to 20mg. We'll see how things change in future.
FWIW, my family has a history of Type 2 diabetes. My Mom got it, and we actually fought when she would come to visit me. With the foods I keep around, and cook, the "usual things" she ate were unavailable and her blood sugar would drop to normal within a week or so. We fought when I used to say "you don't need that pill, your blood sugar is normal and taking it will make you hypoglycemic" which of course occurred when she ignored my advice. She'd get hypoglycemic and need "more food" when her blood sugar dropped too low.
Maybe try it and see, you can always stop, right?
I also am interested in how lipophilic statin use correlated with fewer than expected instances of CLL in a Manitoba study. So I am also taking simvastatin to hedge my bets haha!
You are correct that my mother didn't (she passed away years ago at 93). She was from the generation that called diabetes "sugar diabetes" and thought that was all she needed to avoid. I tried my best to educate her about carbs but it was just impossible. And my sister also will not follow a correct diet. From everything I'm reading, statins don't do a lot to increase HDL. With everything else dropping I think if I lose more weight and continue what I'm doing, I'll get there. It's only been 5 months and I know it's not an overnight fix. This is a lifestyle I know I can maintain, not just a short term diet.
Absolutely correct! But I wonder if it's your LDL/HDL ratio that your doc is most concerned about. This has been found to be more important than "just having individual component levels that are normal." I wonder if he's concerned about getting your LDL down quickly. Statins are very good at that.
I wouldn't get hung up on LDL-C or HDL-C levels. In a standard lipids panel the former isn't even measured, it's estimated. But more important, in a given patient the concentrations of these cholesterols in the blood are a crude and possibly misleading indicator of the risk of CVD. Why? Essentially, because the standard lipids panel is weighing the cargo (cholesterols) when it should be counting the trucks carrying them (the number of transporting particles). It's the number of apo B particles that is significant: The more apoB particles within the lumen of the artery, the greater the trapping of apoB particles within the arterial wall, the greater the injury to the arterial wall. The more apoB particles are reduced by therapy, the less the injury to the arterial wall, the greater the opportunity for healing. Moreover, nowadays apoB can be measured accurately and inexpensively. ncbi.nlm.nih.gov/pmc/articl... This is a not too technical read, and not very long.
The apolipoprotein analog of HDL-C is apo-A1, and you should have no trouble finding a lab that will do an extended lipids panel including both apo-A1 and apo-B. The ratio apo-B : apo-A1 is a more dependable indicator of CVD risk than any cholesterol or ratio thereof onlinelibrary.wiley.com/doi... In the UK the price of the extended panel is equivalent to US $108.
Until you have had your apo's measured, I wouldn't even think about medication. If you've taken the trouble to read either of the above references, you'll have gathered that LDL cholesterols are a very mixed bag, with a range of effects in the circulatory system, and to lump them all together in one assay can be misleading. The same applies to HDL cholesterols, and from this article health.harvard.edu/newslett... you should note that while some medications have succeeded in raising HDL-C levels in clinical trials, none reduced heart disease, heart attacks and strokes; in fact one drug seemed to have the opposite effect. According to the harvard.edu article, you're doing the right things, and you don't need to start statins to raise your HDL-C because the effect would be small. They also say you don't need to start drinking alcohol in moderation, but you could give it a try 😉
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