I've often observed that our immediate response when we are diagnosed with CLL, is to re-evaluate our diet (good) and look at how we can extend our time before treatment and improve our life expectancy by taking supplements, for which there limited evidence, particularly when it comes to hopes of boosting our immunity. What evidence there is for immune boosting with supplements, is pretty well invariably the observation of boosted lymphocyte activity and counts - the last thing we need! Despite more and more evidence that maintaining our fitness is the best way to maintain our health, assigned priority in doing this seems to come way down after supplement use. I expect that part of that reduced priority, is because of the common perception that to benefit, you need to exercise regularly (like daily) and fairly intensely. So a recent study report published in the Journal of the American Medical Association (JAMA) jamanetwork.com/journals/ja... as covered by MedpageToday medpagetoday.com/primarycar... and in considerably more detail by Dr Jeremy Faust, hopefully will encourage us to look again at what we can achieve through even moderate exercise and by allocating time less regularly (e.g. on the weekends). As the MedpageToday article observed (emphasis is mine); "As long as people got their weekly recommended moderate to vigorous physical activity (MVPA), it didn't matter if they did it on a "weekend warrior" schedule or more regularly throughout the week."
Weekend warriors vs. daily gym rats: cardiovascular benefits are similar, new study finds.
Jeremy Faust, MD
Now there’s evidence to support that the frequency/pattern of your exercise does not matter. You can exercise every day or you can do so less frequently but for longer (“weekend warriors”). What matters is the total time and that you exercise at all (more on this below). What matters is that you get your heart rate up a few times per week. If you don’t have time for a daily workout, you can just pile on the minutes on the weekend (and my daily routine is fine too). Participants who exercised moderately or vigorously as little as 2 hours per week had lower rates of atrial fibrillation (a heart rhythm which can be dangerous), heart attacks, heart failure, and strokes. The study followed nearly 90,000 volunteers (with an average age of just north of 60) for around 6 years, on average. insidemedicine.substack.com... (no registration required)
While BTK inhibitor therapy with the 'inib drugs (acalabrutinib, ibrutinib and zanubrutinib, with pirtobrutinib and others on the way), has dramatically changed survival times with CLL, these treatments do come with a heightened cardiovascular risk - with atrial fibrillation and increased blood pressure of most concern, such that some CLL specialists recommending cardiovascular screening before prescribing a BTKi therapy. So this study excerpt from the Medpage Today article is of particular relevance!
Device-measured physical activity data from the U.K. Biobank cohort showed that among those who reached 150 minutes of exercise a week, both activity patterns were associated with similarly lower risks of incident heart disease compared with inactivity:
- Atrial fibrillation: HR 0.78 for weekend warriors (95% CI 0.74-0.83) and HR 0.81 for active regular (95% CI 0.74-0.88)
- Myocardial infarction: HR 0.73 for weekend warriors (95% CI 0.67-0.80) and HR 0.65 for active regular (95% CI 0.57-0.74)
- Heart failure: HR 0.62 for weekend warriors (95% CI 0.56-0.68) and HR 0.64 for active regular (95% CI 0.56-0.73)
- Stroke: HR 0.79 for weekend warriors (95% CI 0.71-0.88) and HR 0.83 for active regular (95% CI 0.72-0.97)
Increased levels of exercise could help reduce frailty in patients with the most common adult form of leukemia, chronic lymphocytic (CLL), according to new research from the University of Surrey. The discovery of a link between frailty and "good cholesterol" (high-density lipoprotein (HDL)) could help identify people most at risk.
In the first study of its kind, researchers from the University of Surrey and Duke University Medical Center found that higher levels of the HDL were directly associated with better physical fitness amongst patients, reducing their risk of frailty. Known factors that increase levels of HDL are a healthy diet and increased physical activity and exercise. medicalxpress.com/news/2022...
As Dr Faust concludes;
"As long as your exercise is genuinely challenging (if it’s too easy, you may not be getting your heart rate up enough), do what works for you. Do you like hitting it hard on weekend afternoons only? Do it! Do you prefer daily morning workouts? More power to you."
Many of Kwenda 's posts concern the benefits of exercise when we have CLL, such as this one from a few months ago;
Physical Activity Improves Quality of Life, Fitness Among Older Adults With CLL
Update: Yet another report of the importance of exercise for a long, healthy life, from a University of Cambridge meta-analysis study which found that "People who did 150 minutes of moderately intense physical activity per week were shown to have a 31% lower risk of death from all causes and a 29% lower risk of death from CVD (cardiovascular disease). This level of exercise also decreased the risk of death from cancer by 15%." (Again, my emphasis)
My wife recently gave me a fitness watch and I've been pleasantly surprised out how easy it is to get my heart beat into a moderate to intense exercise range simply by walking at a good pace up nearby rises, or even by setting a brisk pace on the flat. If you get to the point where talking is becoming more difficult, you are achieving a worthwhile level of exercise intensity. As I've mentioned previously, for those of us who think we are time poor, there are opportunities for what's termed incidental exercise that take little to no extra time if we look for them, such as taking the first available car park then walking a bit further, instead of using the time cruising around the car park lot for a closer park, or by taking the stairs for a few floors rather than waiting for a lift.
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Thank you for posting this, Neil. I’ve been doing a brisk 2 mile walk 6 days a week, plus a step recumbent bike, followed by lifting weights. What has changed is that I’m not out of breath going up the stairs anymore. I don’t know if there’s a correlation to platelet count but it is now 148, up from the usual 105-125 range. Most of all, I feel better about myself!
I am a fitness enthusiast & instructor myself but can not get back to it yet. Please tell what treatments are you on, what was your past exercise routine & how did you get your platelets up???
I was diagnosed in 2011, and my most recent treatment (the 3rd one thus far) was monotherapy 400mg Venetoclax. that I took for 2 years. I am now in remission since April, and decided to start a regimen of getting back in shape after not doing much exercise for a spell. I have no idea how or why my platelets went up to 148, and if the rise was correlated to stopping Venetoclax or if it is connected to this exercise I'm now doing.
Yes I started with full dose Zanubrutinib as soon as my numbers reached the criteria, well 6 months after when nothing I was doing naturally was improving the numbers. 13yrs 8mos of W&W & 13 days on Zanubrutinib caused chestpain, which was Pleurisy left untreated by the medical staff in the ER graduated to Left Pleural Effusion, Pneumonia & Collapsed Lung.
Now on 1/2 dose Acalabrutinib, 10 wks tomorrow & had chestpain today. No physical exertion to blame this time. But in the ER I was happy to discover that my Platelets started trending up. Plts 6/19 92, 7/3 84 & 7/17 72 - this clear 10pt drop every 2 weeks scared me but today it was 89. Hbg 11.9 & WBC/Lymph 30s. So that was pleasant & to know that it wasn’t a blood clot or dangerous low Platelets requiring a transfusion.
I feel sick but it is Sinusitis/Post Nasal Drip collecting in my Right Chest/Lungs. I need Antibiotics at least & possibly steroids but they only ordered muscle relaxers. Today I learned to be patient with the treatment, that my muscular figure will not dwindle away if I can’t workout hard ever & also that hydration makes a colossal difference in your life but especially with finding my veins.
The doc said that I was muscular & I said how would you know & she replied I can see it with ultrasound used to find your veins. She also said that my veins tripled in size when I drunk my routine 1.5 liters of Lemon Water & 16oz of Cold Pressed juice. I came ready this time. This is my new normal & I am determined to embrace it like a Big Grown Blessed & Highly Favored Woman periodt🙏🏾
Thanks Neil. I have done exercise both ways - the weekend warrior mode before we retired and the “almost everyday” mode after retiring.
I feel better with the everyday mode but our level of effort varies across the days. It’s easier for me to get more intense exercise cycling than it is hiking.
Thanks. I read it all. My body so loves exercise, but then I get quite tired on occasions. Recently found cammomile tea helps. Hope we don’t have to avoid this. Your picture seems very relevant to CLL - the road twists unexpectedly, and who knows what you find in your way, but hopefully you get through the unexpected while going down the road!
My heart rate when walking the dog is around 105 bpm (not a fast walker, but walk 12 times a week for 40 mins each session). Was there any recommendation on what you should try and achieve in terms of a heart rate?
I'm assuming it's the WHO MVPA guidelines which are relevant, given the study Objective (was) "To examine associations between an accelerometer-derived “weekend warrior” pattern (ie, most MVPA achieved over 1-2 days) vs MVPA spread more evenly with risk of incident cardiovascular events."
Per table 1 of World Health Organization 2020 guidelines on physical activity and sedentary behaviour, pubmed.ncbi.nlm.nih.gov/332...
" On an absolute scale, MVPA refers to the physical activity that is performed at >3 METs (ie, >3 times the intensity of rest). On a scale relative to an individual’s personal capacity, MPA is usually a 5 or above on a scale of 0–10."
Elsewhere, we have defined the MET, or" metabolic equivalent of task, or simply metabolic equivalent, (which) is a physiological measure expressing the intensity of physical activities. One MET is the energy equivalent expended by an individual while seated at rest, usually expressed as mLO2/kg/min."
Sofrom that I take it that if your respiration rate has doubled to tripled (assuming you'll be breathing more deeply when exercising than resting, you'll be in the MVPA zone, which fits in with when it becomes more difficult to carry on a conversation, but I'm no more an exercise physiologist than I am a doctor.
I know that we learn more as time goes on but I like a daily workout no matter how slight. Its all about routines for me & exercise should be added to your routine like showering & brushing your teeth. Just walking is suffice 🤷🏽♀️
I couldn't agree more! Incorporating a daily workout, no matter how small, has been a game-changer for me. It's all about building healthy routines that become second nature, just like showering and brushing our teeth. Exercise is not only beneficial for our physical health but also plays a significant role in maintaining mental well-being. For those days when I'm short on time or feeling a bit tired, even a brisk walk can be enough to get my blood flowing and clear my mind. Walking is such an underrated exercise; it's simple, accessible, and can be done almost anywhere. Whether it's a stroll around the neighborhood or a quick walk during lunch breaks, it all adds up to keeping our bodies active and moving. Also, Taking a few minutes each day to stretch and release tension in the glute muscles can be incredibly beneficial, especially if you spend a lot of time sitting or engaging in exercises that target those muscles. I find that incorporating glute stretches (read: totallyduh.com/the-ultimate... into my routine helps improve flexibility, reduces any tightness or discomfort, and enhances overall lower body mobility. It's those little moments of self-care that make a significant difference in how we feel throughout the day.
Absolutely🎉🎉🎉I had to laugh at myself. Sad that I can’t workout in my Homegym but sitting here waiting for someone to help clean my house. My Plantbased Cooking/Juicing & Cleaning this 750sq Foot Condo will be my daily workouts 🤦🏽♀️ Anything works, just 30min 5 days per week minimally!!!
Not to derail the excellent exercise topic, but your mention of immune boosting supplements that are counter productive for CLL patients has me wondering if you could point to perhaps another thread that discusses this in more detail. Specifically, are there common supplements that are known to boost lymphocyte activity and counts and hence should be avoided by CLL patients?
My CLL diagnosis over 14 years ago resulted from an investigation into why I developed severe neutropenia, with which I've lived for over a decade, so I've been on the lookout for immune boosting supplements since diagnosis. My diagnosing haematologist advised me that immune boosting supplements didn't work for CLL and 14 years later, I consider that advice is still correct. The only way to boost neutrophil production is with G-CSF injections, though exercise can temporarily shake them off blood vessel walls and move them out of the spleen.
With regard to lymphocyte boosting supplements, the two that come to mind are elderberry - for which it is specifically promoted by growers and for some of us, Beta Glucans from fungal cell walls. CLL B cell receptors aren't randomly triggered by antigens as you might expect; there's a biased distribution such that under a percent of us can experience rapid CLL progression if we take supplements containing Beta Glucans derived from certain mushroom varieties. Pretty well every supplement with claimed immune boosting properties that I've investigated and found reasonable evidence for that claim, typically references of boosted lymphocyte activity and division. It's usually in vitro (microscopic observation) of at best human lymphocytes, but more typically animal (usually mouse model) studies. You don't need much evidence to promote a dietary supplement which is typically regulated as a food, rather than for its claimed medicinal effect, unfortunately. The FDA tried to strengthen the regulation of supplements sold for claimed medicinal properties late last century, but strong lobbying by the supplement industry resulted in what we have now. See en.m.wikipedia.org/wiki/Die...
An excellent and most informative Post, I really enjoyed it, Aussie Neal, and I agree with everything you said.
It coincides with my Post a few days ago, regarding the Australian Hospital which specialises in 'Exercise' during and after 'Cancer treatment. As I also mentioned, it appears to be the only hospital in the Western World which does this specifically.
In light off the further information you have provided, and the value of exercise, acknowledged by various Doctors and Consultants, one hopes that pressure will eventually convince more Health Authorities World Wide, to adopt the Australian scheme, aty some time in the future.
Your advice and comments regarding those who are time poor, is very relevant, and I have always been of the view, that 'Exercise Preparation' is a 'Downside' for many people, and it need not be so,
We all find a way to exercise which suits us as an individual, and often it's a personal thing, However over many years I have developed a routine which is, fairly simple in its execution. It also does not involve, 'Sports Kit', (expensive or otherwise) and is practical, and effective, with minimal preparation.
As soon as I wake in the morning, I do several minutes of slow deep breathing, Followed by 20 minutes of 'Calisthenics, either in bed, or upright at the side of the bed. This is followed by 20 minutes jogging/ dancing on the spot to music, then straight into the shower. Job done.
This can be done indoors, or out.
The timing and exercise levels are, what one can do comfortably, as long as you do something regularly, which gives includes, 'Areobic' benefits.
I accept that this will not be for everyone, especially in 'Cold Climates', and merely mention it as an option.
My Fitbit has a mind of its own but I know what I have done. This week it thinks I have done an ‘outdoor bike ride’ several times when I have actually aquajogged. Sometimes it reads it as elliptical and has even recorded it as a walk. This week I have done 6 days of aquajogging for just over an hour but it obviously thinks otherwise but who cares🤣🤣🤣
Neil. Thank you for the post. It’s inspiring because it’s fact based, and part of a series from many of you that substantiates the benefits of common-sensically healthy behaviors. I had been exercising and eating healthier before a two-year cll treatment with a speed bump in the hospital a few months with arrhythmias and heart failure, but after that once I regained enough conditioning to walk, I determined I wanted to feel better and be happier from day to day. I’d already lost the taste for wine, bourbon and tequila ( blessedly), and switched to breakfast and lunch with tea at night—a good regimen I’d experienced at Buddhist retreats decades ago.
I determined to maintain exercise but arthritis in my feet derailed the walking plan—which works for me early mornings. My PT, a veteran from NY Hospital, advised to make sure at least at intervals I walked fast enough to make conversation impossible: easy advice without the need for digital trackers. But when bunions ruled out walking, I switched to a stationery bike at home and now an elliptical during a month with a nice college gym. Both are easier on my feet, the elliptical easy on the knees too and recommended by sports MDs at HSS, a decent orthopedic hospital in New York. (The disadvantage is the ugliness and expense of looking at one in your house. But I’ll cross that bridge later.) … I’m told swimming is best, but I’m not a natural swimmer and I’d think ( not sure) water borne infections are a risk in pools.
In a nutshell, I feel better every day mentally and physically. At the moment I’m eating ice cream at night, but I’ll have to forgo that indulgence I think. No pain. No gain. Bill
Thank you everyone for your replies and for sharing your experiences with staying fit. I agree about how smart watches can keep you moving and motivated. As peterhend says, "Walking is such an underrated exercise; it's simple, accessible, and can be done almost anywhere". As I mentioned in my post, I was quite surprised to find how much you can elevate your pulse with a brisk walk to achieve a good aerobic exercise workout, particularly if you can find some rises to help. I've had fun exploring where in my neighbourhood, I can achieve the quickest increase in altitude, though it's also been interesting to see the limitations in GPS position accuracy. According to my watch, on a recent walk, I was engaging in a parkour course through front yards and leaping over fences!
I note that a further article has been published in The Conversation, which provides some additional information on the study limitations, what other research in this area says and what it means for you and your routine. Of note; "Despite the many advantages the UK Biobank activity trackers have over questionnaire-based studies, these trackers are not great at capturing strength-training exercise, such as weights or pilates, and other static activities that have established cardiovascular health benefits."
Regarding what other research in this area says, I omitted to include this report from February of this year; Just 75 mins of physical activity a week reduces risk of early death
Researchers at the University of Cambridge led a new study that sought to clarify the results of previous meta-analyses, looking specifically at the association between non-occupational physical activity and the risk of death. Undertaking the largest pooled data analysis of its kind, researchers only used studies with more than 10,000 adult participants, leading to a sample size of more than 30 million. The evidence base was largest for mortality of all causes, the incidence of CVD and cancer.
The researchers found that, generally, two out of three participants reported moderately intense activity levels below 150 minutes per week. Less than one in 10 participants did more than 300 minutes a week.
People who did 150 minutes of moderately intense physical activity per week were shown to have a 31% lower risk of death from all causes and a 29% lower risk of death from CVD. This level of exercise also decreased the risk of death from cancer by 15%. Doing more than 150 minutes per week of moderate-intensity activity showed only a marginally reduced reduction in the risk of early death. (My emphasis)
It used to be that ten thousand steps were required to keep healthy, but this has been now accepted as a false figure and FOUR thousand certainly helps.
Thanks Dick for sharing yet more evidence that any amount of additional exercise - not just through walking, can provide significant health benefits.
I'm immediately suspicious when I see a nice round target number being advocated for improved health - such as the 8 glasses of water or 10,000 steps per day. The marketing "sound bite" attempts come with the real risk of putting off people from endeavouring to just drink a bit more water or walk just slightly more each day, because they (often rightly) consider that they can't achieve this goal, so why even bother! I've posted several times about the bad marketing about drinking more fluids, with the wrong information that drinking caffeinated drinks 'is dehydrating', so that you have to drink even more water to counter the 'dehydration'.
It's good to see the BBC has quoted Honey Fine, a personal trainer as follows, about the benefits of incidental exercise;
"Tasks like standing, carrying shopping, washing the floors, hoovering, pacing whilst talking on the phone - it's all the little things that make us more active that help us to burn calories more efficiently," she said.
"Walking can lower your blood pressure, strengthen your muscles to protect your bones, it can increase energy levels as well as giving you endorphins and it can help you maintain a healthy weight alongside healthy eating," she says.
Other benefits include boosts to your mental health and important time away from screens and other distractions.
Walking is suitable for "almost anybody" because it is low impact and easy on joints and muscles, she added.
I've posted and replied many times about how the 8 glasses per day is a big marketing over simplification - what you actually need varies with so many factors that the message really should be about drinking enough fluid each day for your particular situation.
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University of Surrey study
