This topic just keeps coming up, such as in this recent post CLL and weakness? Fatigue just a state of mind? healthunlocked.com/cllsuppo...
So for those who have missed the CLL Support UK January 2025 "webinar where we aimed to share recent advances in our understanding of CLL derived fatigue and how exercise can counter fatigue and other symptoms", here's the link to the 25 minute video. cllsupport.org.uk/conferenc...
A reminder that there is more evidence for exercise improving both the quantity and quality of life for those with cancer, including CLL, where it typically provides more benefit than any other non-drug intervention, not to mention being much less expensive. What's more, the evidence just keeps on growing!
"We received many questions for Dr Bartlett and were unable to cover them all in the webinar. We sent the questions to him after the event and he has kindly answered them." See: mcusercontent.com/14f1571ca...
I 100% advocate for exercise as the best antidote for life, CLL related fatigue, and all the other preventative health benefits that come with regular exercise and activity.
As a very active person on diagnosis, and my whole life, my question to the GP when I had blood tests done at the end of 2019 was "why do I feel so tired so often when I didn't used to?"
I believe that the CLL has reduced my exercise tolerance and endurance, and that this is not age related (50s). I have the mental stamina still, but my body has not been very co-operative. I have peers the same age who're very active like me, and don't have the same decline in stamina I've experienced.
So, I've simply adapted. What is best? Best is regular (daily is best) moderate exercise with a bit of not so moderate added in. I had to adapt to this as regular for me was quite intense (and enjoyable) for a long time.
I don't like that my normal activity (some others might see as extreme) has been dialed down as I manage tiredness and energy fluctuations and work. I don't like that I am not invincible like I once thought I might have been.
But I do have the ability to schedule meaningful regular activity into my week (walking/hiking/biking) and besides CLL and its random throw outs to me to navigate.. I appear to be quite healthy otherwise.
When I had surgery for breast cancer nearly 18 months ago, the first thing I did on discharge was go for a walk around the block. The next day it was a further quiet walk in the forest. After this it was longer walks daily, as I couldn't mountain bike ride then. I healed well and then got back on the bike within 6-7 weeks. Every day I had radiotherapy treatment, I went for a walk.
I love it (physical movement and exercise) and not everyone does. Yet, just a little consistently can go a long way.
You prompted me to update my experience on Dr Bartlett's exercise trial. Now in week 4. It is having a terrific effect on my mood and already signs of increased stamina which I was struggling with when I finished my treatment. I can now push out 90kg (far greater than my body weight) 20 reps x 2 and my arms are getting stronger too. Really pleased with my progress. I visit their gym x2 per week and x1 at home. Would recommend to anyone who is in the UK and particularly if you have access to Guildford Uni
Hi Dragonfly. Sorry for my tardy response. Had some family issues. No. I suspect because it is a trial we will wait many years before we get the results.
Awesome information Neil- as always thank you for giving us wonderful and uplifting information- question do they recommend a specific type of exercise and duration for CLL folks?
I did the full course at the University of Guildford. It was truly inspiring. It was a revolution for me not just in the improvement in my fitness but in the fact that I pushed weights I thought I could never do. I have set higher boundaries for myself.
Unfortunately I badly broke my hand last September and that has slowed my progress.
The training is HIIT- high intensity interval training - so you are going to the limit of what you can do. Bartlett’s idea is redirecting energy from the cancer cells to muscle. They are also working with patients with oesophageal cancer.
I did see a specialist privately about my slow healing fracture and he thought my CLL was a factor
I found this briefing so helpful and very validating. I am being treated with ibrutinib because I have had neurological issues and the cancer cells were found in my central nervous system. I was not displaying any other symptoms of CLL and my blood work was clearly W & W levels. But since I've been in treatment (4 months), my energy level dropped 1000%. I went from walking every day + working with a personal trainer a couple of times a week and attending yoga and cardio classes & skiing in Utah, to watching TV & napping. There are days I don't even get dressed. I am encouraged by these suggestions to push through and am going to try to re-introduce exercise in to my life to see if any of my mo-jo comes back.
Could not agree more! Not a fan of "exercise," per se, but I do aerobic swimming and I work out at the Y for those less used part of my body (the core and biceps etc). Not for long periods... I have to admit exercise is boring to me. On the other hand, I play pickleball about 2-1/2 hours per day, 5-6 days a week. It's probably not the best form of "exercise" but it is fun and I am good at it even tho I am pushing 83. My heart gets the best workout. And laughing is great mental health.
I think what you are doing is wonderful. I’ve never played pickleball, but it looks like fun. I’m 77 and have always liked aerobic exercise better than weights. I have 2 big Labradors that keep me busy. I live on 10 acres in the woods so we spend a lot of time out there walking. I also love my ski machine and treadmill while listening to my favorite country music. I used to go to the gym and attend a senior yoga class that was fun. I should do that again.
Thank you so much for this reminder and information. It's spot on
Awe I live for outdoor physical activity. It restored me mentally, emotionally, physically, and in every other way.
And for those who struggle, my own experience has that even if all I can do is drive up the canyon and snowshoe for 15 minutes when I was in my it was huge.
I also admit that it is a huge mental struggle sometimes to get myself out there when I feel so tired
However, however, to help myself I have made a little outline and reminders to myself that no matter how lousy I feel before I go, I always feel so much better during and after.
and on those days that I let the doubt get the better of me, I can really feel a difference in a negative way.
I perceive from most of what I read that the fatigue which I experienced is not quite the same as the general conversation expressed. I did not feel simply tired or exhausted, I had such low energy and episodes of extreme weakness whereas I could not physically get the body to respond. My brain would determine to lift my arm or leg, but the response was extremely devoid of the desired action.
At diagnosis I was 55 years old and self employed. I was training Gundogs in the field and running a boarding kennel with my wife. I was working 70 plus hours a week and averaging 13 miles a day. Within 38 months it became so difficult for me to walk 300 feet to check the mail, that I needed supervision in case I could not make it back to the house on my own.
Sometimes I could not stand up and needed help getting dressed. Sometimes during the day, I would involuntarily have to sleep under the circumstance. The sleep was so catatonic that it was hard for someone to wake me. When I awoke the sensation was painful and unpleasant similar to having a bad alcohol hangover that included nausea. These involuntary naps would last from 2 to 5 hours and they would not produce regeneration.
My muscles felt overworked and not in a good way like after a fitness workout, but rather like being made to go another five miles with a 40 lb pack after already having gone 10 miles. I felt like my body weighed twice as much and like I had sand bags strapped to both arms and legs.
My connective tissue near the joints became sensitive and painful. The local Hematologist said that the fatigue and arthralgia like conditions were un-realted to CLL. He stated that I needed to exercise more and also sent me to see a Rheumatologist. The Rheumatologist diagnosed me with RA and prescribed diclofenac. Long story short - the docs gave me a nothing burger.
In all of this what stays in my mind most is the local hematologist telling me that the fatigue was not related to CLL. Well, at 39 months after diagnosis I entered treatment primarily due to extreme fatigue. I began treatment with Obinutuzumab in a clinical trial for O+V. After 3 infusions I began to experience strength and stamina improvement. During the year that followed, I bicycled 1500 miles in 5 months, and returned to work full time. Although I am not keeping up at the pre diagnosis level, I am living much better than I was prior to treatment. And now that I have achieved 65 years age, I suppose that it is reasonable to feel like I am 65.
I am inclined to complain about many aggravating now age related challenges, however, I realized that getting old and experiencing getting older was actually the Goal.
I am not sure that my response commentary to this post has value other than to just say, "We are individuals with individual suffering, joy and outcomes that are at times similar".
I really can connect with this post. Prior to treatment my fatigue just felt as if my body was slowly switching off. We are always told not every CLLer has fatigue and the intensity varies. You are doing so so well now ❤️
I already believe that exercise & good nutrition is a vital component of healthy living. I feel better when I can exercise. At the moment 'exercise resistant' isn't a state of mind. If I was lazy, I'd be out having fun & causing mischief!
One thing I find reassuring is that cancer related fatigue is being studied for those who are treatment naive & CLL in particular. A bonus for me is that one of Dr. Barrett's slides is a good opener for a conversation with Neurology.
Many thanks for this Neil, I will watch this. I've had some issues which my GP says are nothing to do with my CLL however I think they are linked as I believe that it's due to fatigue.
Thanks again for your insights and giving us great information.
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I have just had my latest blood count and my platelets are 130. Should I be worried? I have read that the normal count is 130-400.
