Hello, I remember I think AussieNeil saying that perhaps exercise was perhaps the golden bullet for CLL*. I've had a cough for about a month like most of the UK (first 5 shops I visited had run out of cold treatments!) But that and the previous cold weather has left me rather inactive. So what is best? Some cardio, running? Doing some weights? It seems to me the condition can leave us drained, but maybe exercise can help counter it?
* Here's the post explaining why an exercise pill would be a major cancer treatment breakthrough and would be prescribed to every cancer patient: healthunlocked.com/cllsuppo...
The corollary of this is that whatever exercise you can manage, even a small amount, is beneficial. In modern societies, most of the population is exercise deficient. - Neil
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Research123
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I don’t know if there is a “best” exercise for CLL. I believe the best exercise for anyone is the one you do ( as opposed to the one you aspire to). Anything that gets you moving helps. In my first round of wait and watch, walking was my go to because it was something I could do and adjust depending on my level of fatigue. In truth it often improved my fatigue though I had a lot of exercise intolerance. I also swam when I could ( we live 50 miles from town).
I agree 100%… The best exercise is the one you do and that’s age appropriate. Because I am 70+, my routine is to walk outside as much as the weather will allow me, 5,000-7,000 steps, stretching for about 20 minutes about 2-3 times a week, stationary biking 2-3 times a week, and some light weight training for the upper body 2-3 times a week… I combine some of these routine depending on weather and stamina… I rarely go a day without doing some components described above… But find something that you enjoy and that’s doable even if it’s just 20 minutes a day… Start slowly and build up in small increments…
Tai Chi and Qi Gong seem to do a lot of good. My Chiropractor suggested it was better than some things such as Pilates and I ignored him at first but then the seniors exercise group (referred to as Yogalates) caused me an injury and I changed to the Tai Chi. Highly recommend it.
nelletap- I agree! Qi Gong changed my life, immediately, once I had the right instructions. It eliminated my fatigue and actually made me hopeful that I will be able to maintain my hard won remission much longer, if not indefinitely.
I’ve attended Tai Chi classes half heartedly on & off for years on a take it or leave it basis. After my diagnosis I started to apply myself more & incorporated more Qi Gong exercises. So pleased I persevered as I’m now loving my training & feeling the benefits both physically & mentally. In good weather golf I find helps me keep active & happy.
When I was young, I ran distance and played football.
Later when I was in my 30's I took up walking as we have some great hill walks close to where I live, I also had at various times exercise machines that I used indoors.
By the time I was 50, more health complaints including CLL curtailed this, I bought various small exercise equipment from Amazon that I could use even when sitting on a couch.
A bad bout of shingles in my leg/foot took away what little mobility I had, so now I only use an exercise floor mat doing 'supine' exercises, stretching and twists, I was amazed at how well these non strenuous exercises can 'tone' the body.
It is not all about how far or fast you can run/bike/swim ... when we were growing up, we didn't exercise .. we went out to 'play'
P.S.
You are correct ... " our condition can leave us drained "
... another advantage of doing supine exercise, you can just relax, close your eyes and ... zzzzzzzz😎
hi ygtgo, I am on waiting list for surgery for spinal stenosis so like you my mobility is impaired but I have started attending a chair yoga class and I find it excellent. By the way I also live in Scotland.
Please let us know how you are doing after you have your stenosis surgery. I have put off a spinal laminectomy for years, especially after developing CLL.
hi Arnold313, will let you know after my surgery, although goodness knows when that will be, I was told in June that I needed the operation and my guarantee date was beginning of September and we are now in January and am still waiting. The waiting lists in the UK are horrendous.
Best wishes to all and especially my good friend Sparkler as we have both been on this forum since beginning. Olive
For CLLers, I'm a big fan of "work your way up VERY slowly and then stick with it" kind of exercise. So, no He-Man exercises on day 1, no "weekend warrioring" while you don't do anything the other 5 days/week, etc.
Part of that is b/c of how exercise affects our inflammation levels. Since I'm a big proponent of an anti-inflammatory lifestyle, I almost completely avoid high impact exercise. Studies have shown moderate and low impact exercise can reduce inflammation, while conversely high impact can worsen it.
But, this doesn't mean you can't work your way up to something that seems high impact, but wouldn't be for you personally, like a 10K run for example. This just means you've got to work your way there over a year vs a week, so you're always staying in the low to medium range of impact for yourself (you don't want the exercise to ever "feel" too intense or too hard).
And what I do - a 2.6 mile walk with my spouse 7 days/week, 365 days/year (we have a 45 minute route that I add 10-20 steps to every 3 months now, b/c I don't need any more steps, but it's nice to see gains). In the summer, I add some slow pool walking or bowling, but still do the walks - I'm just more active then b/c my kids are more active then.
I like to ride bikes outside and go on hikes/walks outside. I get too hot trying to exercise indoors except for PT exercises. It’s more difficult in the winter to get out on bike rides. It’s cold and sometimes there’s ice or trees down on the trails. Hiking is almost always doable except when it’s raining heavily.
But, as others say, it’s whatever suits your fancy that you will do. Something you enjoy that you can do alone or with others is helpful.
Thanks for initiating a discussion on exercise, which indeed has better evidence for slowing progression and improving the response to treatment than any other modality. Here's my post that you've referred to, which hope you don't mind me including in your post for ease of access: healthunlocked.com/cllsuppo...
There's more and more confirmatory research showing that you don't need to meet a particular exercise threshold to achieve health gains, which should translate to improvements in your quality and quantity of life with cancer.
I find that walking and cycling are my exercises of preference. They are also easy to do as incidental exercises for the time poor. Things like taking the stairs instead of a lift/elevator, (or walking up the escalator), or just parking on the fringe of a car park, rather than using up time wasted, easily saved by walking, when cruising for a closer park to the entrance are good ones. Cycling to businesses also generally gets you access to seldom used bike racks near the entrance! (Which leads me to ask the rhetorical question, why do we drive to the gym, when we could walk, run or cycle elsewhere and avoid all the bugs?)
Thank you Neil. Always good info from you. I think I have to remember that the best exercise is the one you actually do. Having a cough in the cold I've haven't done much the last month but I think my dog would some walks would be the best start.
100% agree with this Neil. Walking ang cycling are my exercises of choice and can be simply integrated into many of our daily lives. We live in a village in Surrey and virtually everything can be reached very easily by bike or by walking. It's just so much more pleasant and easier than getting in the car and trying to find somewhere to park ! In fact do you really need to go to the gym if you can enjoy the local area by walking or cycling !
Since ten years I have a treadmill in my small studio unit. I only use it for walking. I watch TV during that time. Due to age, 88, I do not exercise walking outside and also to avoid heat, rain, traffic and uneven pavement. Plus I stabilize by having arms on siderails. But even better, across the past year I conditioned my self in stairclimbing. Up till now I climb twice daily up to the 16th floor and now will increas it to three times. Climbing also adds an orthopedic dimention by stretching the spine and shoulders. I notice the increase in lung volume space. The stairclimbing also permits careful stepping without haste and yet produces strength training effect. The exercise of large muscle groups of thigh and legs, it seems to increase the absorption of the CLL targeted therapy. I "get a high" when I reach the 16th floor and feel could probably continue onward. My BP after that is normal.
Sometimes too hot to exercise outside but walk dogs! I find rowing on a good quality machine therapeutic and good all over exercise and can watch TV same time. And swimming someone already mentioned walking in pool - my Physio says with pool noodle under armpits run in deep end. And build up time. I also do Yoga and Pilates - some great online classes. I have a Zen Chi machine I use recommended by my Yoga teacher. Find my Aldi copy Apple Watch under $50 good to monitor steps, heartbeat, oxygen levels.
Hey, i am 72, and was diagnosed for cll two and half years back. Doing deep breathing exercises for 40 mintues early morning each day and half an hour brisk walking in the evening. Feeling absolutely fine ever since. It did really help with the cough problem, i being a smoker.
Research123. Exercise. No I don't have a fitness routine however I work a very physically demanding job. My daily routine usually means I will walk usually about 8 miles a day, pushing a cart that weighs up to 400 pounds. I am squatting, lifting up to 40 pounds by myself, bending and sometimes being up and down a ladder many times repetitively. I am 72 years old, have been through treatment (B+R),In my opinion "motion is lotion" keep going as long as I can.
JeannineMarie, I am in total agreement with your "motion is lotion" quote. I still work 5hrs a day to exercise the brain and walk daily and do stretch exercises. I go to stretch therapy weekly(it's great!). We must not stop moving! 🙂Sandra
I know every little bit helps. I have been doing Tai Chi for over a year and feel it has been a tremendous help as well as my recombant bicycle where by I control the speed and duration I live in California so I am lucky that we have so many nice days to take walks outside. I still practice dentistry 5days a week so it’s not like a have a lot of time but I make it a priority
Pre pandemic my husband and I swam every morning, fear of made us cancel our gym membership and we don't yet feel safe to return. Instead we try to walk 2/3 miles each day. We have a large garden which keeps us busy most of the year. We really miss swimming and we will go back eventually, it exercises every part of the body.
Staying fit will keep you in a good place when treatment is required. It’s personal, but for me cycling is low impact, good for cardio and builds strength and endurance. It also clears you head…
Walking, Hiking and Cycling, though I have to admit that after 17 years of W & W I do now use some lower gears on the bicycle when climbing some local hills on the forest trails.
Hi, I try and walk when the weather allows, it helps with mental and physical health. I joined a walking group and we walk weekly and have coffee and a chat. I particularly love walking in woods which seem to recharge my batteries. X
I definitely agree on the benefit of exercise. As my knees & ankles no long do well, I try to swim 600 meters per day. If I miss a couple of days I can really feel it - less keen on getting things done, sluggish. Mind you, I have a bit of an advantage in Costa Rica in that the outdoor pools are at a swimable temperature all year.
As an avid cyclist I found I couldn't do much exercise during chemo so switched to ebikes (road and mountain) and they have been a revelation. The great thing with ebikes is they have different power settings so you choose how much or how little assistance you need and for me that stops me going into the 'red zone' which seems to knock me about for a day or so afterwards. I'm currently 1 year into a 2 year regime of Venetoclax. Does anyone else feel ill after doing too much?
That is exactly my experience. Prior to doing chemo I would do hard high intensity intervals for about 40 minutes every three days, with no problem. Between cycle 1 and 2 of FCR I had covid, then between 3 and 4 I tried to resume my intense routine. It started great, but then reactivated what I call my chemo hangover (that bleah feeling you get a few days). So lesson learned. Between cycle 4 and 5 I switched to 20 minutes with 3 more average 30 second intervals one day, a good walk the next, and so on. It has been MUCH better. Tomorrow is cycle 5 😀
Good luck BobbyFour. During my FCR in 2018, I found that I needed to calibrate my exercise regime to what my body was actually able to do as opposed to what my head said it should be doing. In the years previous to treatment I was regularly doing 50 to 100+ km cycling rides.
I was able to continue cycling during the first four rounds of FCR, although the longest distance I was able to ride was 40 kilometres. After the fifth round I had to switch to walking. My treatment ended in September but it was only in late December that I was able to do anything more strenuous than long walks. The good news is that I was able to have a normal cycling season the next summer, having done stationary cycling and X-C skiing in the winter to get back in shape.
I've noticed that my cycling speed has been slowing down in the past few years, which is disappointing. It could be the lingering damage caused by the FCR but may also be a function of my age (66). Looking on the bright side, I'm still in remission, which is the most important thing.
I was very ill with a cytomegalovirus infection after my diagnosis. It took me about two years to slowly get back most of my previous level of fitness. I still had the muscular strength and didn't feel tired while cycling or walking, but if I overdid it, I would have extreme fatigue for the next couple of days. That seemed to lift when I discovered my vitamin D was low and boosted that into the normal range. I also used to experience sudden bouts of extreme nausea that could last up to an hour or so, which could be brought on by temperature changes (walking into a cooler air conditioned area), or by pushing myself a bit. I haven't experienced that since treatment.
Prior to CLL, I had always jogged for exercise. Immediately post CLL my knees gave out (thinned meniscus, swollen, noisy, loss of motion). Since knee deterioration was tightly correlated with CLL onset (without any injury or any other osteoarthritis history), I believe CLL may well have caused knee inflammation and deterioration (albeit most elderly persons have signs of osteoarthritis!). In either case, Orthopedic said my jogging days were over. Tried swimming, but any kicking at all results in days of limping. Tried biking long distances, but knees continued to act up. So I bought an elliptical trainer at the very beginning of pandemic. Worked up to maximum settings (in doing so, I broke both hardened steel axles on the machine after a year of near daily hour long elliptical sessions). My knees are great…as long as I don’t stop. Even a couple of weeks without my machine and they start to hurt and make noise. I’m now addicted to near daily elliptical exercise sessions. As far as my CLL, my first year on the machine resulted in weight loss and a halt to the dramatically increasing lymphocyte numbers. The second year on the machine I’m experiencing progression in lymphocyte numbers, but no other CLL specific symptoms. I would highly recommend an elliptical trainer.
I like Professor Janet Lord's down-to-earth way of talking. She gives some very simple, practical suggestions for exercise that can help improve our immune systems. No fancy equipment, no drugs, just simple exercises/activities we can do in our own homes. It's not just for Covid times, it's relevant to any time.
It's great if we can get out in the fresh air and walk, run, cycle etc, but there are times when that's not convenient and we just want to spend a few minutes doing helpful movements inside the home where we are.
Not sure why Janet Lord includes the chickens in the video, but it does add a homely touch.
There's more and more evidence building for getting outside in the sunlight as well. It can be indirect light but near-infrared-light seems to be a strong factor in improving health, recovering from illness, etc. Brazil even just did a study on using it directly with Covid Patients and the results are astounding. So, my thought, whatever you can do, do it outside if you can. If not, at least get outside for 20 mins a day. I prefer hitting a heavy bag, boxing, cycling, walking, and hiking for my flavor of exercise. I hope to get back to mountain biking someday when treatment is not causing me constant nausea along with covid bout #2. All the best and stay active!
All very interesting answers. Some of you may remember that the University of Surrey in the UK is doing a research study on CLL and exercise. I signed up to it but then nothing happened except two focus groups which I was away for.
This week I got a long questionnaire from them and consent form. Don't know if they are needing more volunteers or not nor what will happen yet.
I 'm almost 58 and have CLL since 2018, mild one at the moment.
I am a sport guy and I incremented my sport activity after being diagnosed CLL.
What I do is running, swimming, sauna and sun bathing. I practice those activities in sequence trying to push a little bit my capabilities on each of them but not too much. When I am well tired I stop, I never go to completely exhaustion.
I am blessed because I have the luck of living in a tropical climate and I can run on the sand, swim in the ocean and sunbathe all year round.
I do a session of each activity almost every day, keeping under control my pulse rate (trying never exceed a hearth rate of 160 bpm) .
After implementing this program my Absolute Lympho Count is decreasing gradually in a clear way, while red cells have remained at the low normal limit. I have been monitoring this improvement since last 3 years.
So I guess sport activity is beneficial and must be used to improve general body conditions. Consequently blood parameters will slightly improve according to it.
How about including daily household chores, eg: making the beds, dusting, cooking, doing the dishes by hand, vacuuming, along with some stretches. Try to keep moving along with those all important outdoor walks, if the weather allows it.
Coincidently, CLL Support are collaborating with Dr David Bartlett and the UK CLL Forum on Fitness and CLL Impact. David is building on his findings from his US research. We will share progress and findings when available via the newsletters and webinars. Happy New year all
I don't think there's any "best" exercise for CLL and it's really dependent on your individual abilities and preferences. That said, I've gotten really into spinning (indoor cycling in a competitive class format) and I love it! It's less harsh on my 40-year-old knees than running or other high-impact cardio but it seems to burn just as many calories and it's great for the heart! I also do yoga for strength and flexibility and have been doing so for about 20 years.
I have had CLL since I was 50 and I'm 55 this year. I'm a Pilates instructor - I swear by exercise helping me. (walking, pilates, stretching, a bit of HIIT now and then when I'm feeling up to it). I only teach very part time but I feel completely energised afterwards. There should also be lots of emphasis on breathing correctly, as far as I'm concerned. Do what you enjoying but just do something!!
I agree with other posts here to exercise and stick with it. I am 75 and due to spiral wrap broken leg cannot run but can walk. I have been doing a daily 3+ MPH 3-5 mile walk every day for the last 4 years. I also do 50 sit-ups and arm/leg weightlifting 2-3 times a week.
Doctors generalize by telling patients to exercise for their health. Like most CLLers I have low red blood cell count. I started walking to improve my breathing and prompt my legs to tell my body to make more red blood cells. Your kidneys, which filter your blood, send out enzymes to increase red blood cells. Walking impacted my breathing within 1-2 months. Our body contains about 600+ lymph nodes from bottom of feet to our sinuses. As patients with Chronic Lymphatic Leukemia our lymph nodes contain huge amounts of CLL cells and walking pumps the lymph fluids up our legs to discharges in groin area, much as the heart pumps our blood. The pumping action comes from extension and contraction of muscles.
Exercise! My Oncologist says to do it! Whatever exercise you are comfortable doing, do it. I ride my ElliptiGO Long Stride! I have a 3C (3 gears) and an 11 speed. They are low impact! My joints do not hurt! 😊
For me it is walking, the lymphatic system does not have a pump (unlike the circulatory system that has the heart) so to get it moving you have to move, gently swinging the arms as you walk is good too. Walking outside gives the benefits of being in the fresh air, but even walking indoors (or shopping center if the weather is not great) works. Walking by water or in nature is also a good to reduce stress and anxiety (research Kaplan's restoration theory positivepsychology.com/atte... I also recommend that you find a mindfulness teacher and even if you don't like the idea of meditation (it's brilliant for learning how to redirect attention when we get caught up in the what ifs) then ask them about mindful movement classes which are meditation with movement so very doable and great for the body and mind.
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