I have recently been diagnosed with CLL and have discovered this great forum during my initial research. I am fortunately on watch and wait for now. I have increased white blood cells and increased nodes but have been told it is in the early stages.
I am feeling quite tired at times (which led to my initial blood test).
In other people’s experience have they felt increased fatigue even during the watch and wait period? I am finding it hard to distinguish if it’s fatigue caused by CLL or fatigue that might be caused by lockdown/general stress at hearing the diagnosis. I have a general lack of focus and feel drained even after the most simple of tasks at work. Has CLL affected work for anyone even during watch and wait? Thinking about reducing hours of my role if I can.
Exercise is also proving tough right now. I had planned to complete an Ironman triathlon in the summer but is this thing likely to be out of the question?
I have read that moderate exercise can help generally, but does anyone have experience with endurance exercise?
Any help greatly appreciated.
Thank you
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Our_wes123
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I unknowingly developed CLL right about when I took up running, at around age 47 or so. Looking back, I must’ve run several half-marathons w/ CLL, one after diagnosis, as well as a 25K. (I came in 5th of all males in the 25K lol.) Just before treatment, I was running upwards of 50 miles a week, but I was slowing, I felt it, & I’d take a nap after my daily run. These days, 11 months into treatment, I’m running a 10K two out of every three days. Love it!
In short, every’s CLL’s different, but may you find some comfort in the notion that CLL does not necessarily mean you can’t express your inner iron-person.
Sorry that you have joined our club. I think part of your tiredness and lack of focus is stress from the shock of diagnosis. Many of us agree it takes about a year to come to peace with our new condition. Keep moving on and putting one foot ahead of the other.
I'm untreated and on watch and wait. Can't speak to endurance training but moderate exercise for me has been very helpful. Walking 4-5 times a week and light weight training. In 4 months I will be twice your current age so feeling drained is a common experience.
Listen to your body and taking restorative rest is OK, but do try to keep a certain level of activity. It's good for the mind and attitude.
Thanks Hal. Appreciate your insight and great advice. Always difficult to know what is and isn’t the stress of diagnosis with lockdown and a few other things going on in my life.
Will be patient and keep putting one foot in front of the other.
I work out quite a bit. I’m in my 5 th year of W W. I do Chinese medicine and acupuncture which really helps. There are good days and very tiring days. Heavy workout , I’m done for the day. All the best!
Exercise is a favorite topic and we have 496 postings where it is mentioned. You may want to peruse these quickly and pick out the pertinent ones to read the replies in depth
Hey there. I was diagnosed this summer at 34 and began treatment. I know it’s a very challenging thing to wrap your head around at this age. Please feel welcome to reach out on an individual basis. I’m happy to have a younger friend to bounce things off, and will certainly let you in on what I’ve discovered as well.
Fatigue is very common in CLL and exercise can help. This forum is a great place to hear from other patients. Another option is to take a look at the overview I wrote on our physician curated nonprofit's website on fatigue: cllsociety.org/2018/09/cll-... and here is a well referenced one by a guest author on exercise in cancer in general: cllsociety.org/2016/04/exer... Humbly, our website has a ton of credible these topics and most topics in CLL. Stay strong, we are all in this together. Brian Koffman MD (retired)
My son was diagnosed at age 34. He needed treatment within 9 moths, but is now MRD for over 2 years. He didn’t notice the fatigue until after he was treated and had so much more energy. Good luck on your journey.
I was diagnosed last year at 42 with similar symptoms, I have found if I am more like to get fatigued if I don’t do anything for a while, I do light weights and some cardio in the form of refereeing rugby league, the key for me is pushing through the first 10-15 minutes then I get a second wind... I agree that a lot of the fatigue is stress...Learn to listen to your body..
Thanks Jimmy. Yeah, difficult to know what is fatigue and what is just stress related tiredness , especially with Covid and general lack of interaction. Hopefully will get clearer over time
Hi, I do resistance training. Heavy weights to failure. For me it's easier than endurance training because it's an anaerobic exercise. May be more suitable if you feel tired.
I was diagnosed a couple of weeks short of my 37th birthday - and will reach the 15th anniversary of my diagnosis next month; I've been on watch and wait the entire time.
I don't write that to suggest in any way that your CLL will progress the same way. We're all different, we all progress differently, and you've only recently been diagnosed. My experience over the last 15 years is not necessarily a guide to what your experience will be. You'll need to talk to your specialist(s) to better understand your likely CLL journey. All the same, I wish I'd had somebody back in January 2006 who could have told me that being diagnosed with CLL at the cusp of 37 needn't be quite the shattering news I assumed it was at the time.
As to answering your specific question... If you're planning an ironman triathlon, you're fitter than I am. All the same, I exercise regularly. I'm a keen casual cyclist, and try to get out on my bike most days (or, in winter, most days that it isn't raining), with a longer 10-15k ride on weekends. I do feel more tired after the long weekend bike rides these days, though that might be middle age as much as it is CLL! All the same, I feel better both mentally and physically after my bike rides - particularly important given the pandemic-based restrictions I've faced this year on everyday life.
Thanks Vakraas. Great to hear from someone who has been in a similar situation to myself in terms of diagnosis and age. I appreciate all journeys are different, but great to hear that you are still exercising to that level. Think I will just have to be a bit more patient with things and listen to my body as time goes on.
Welcome. There's a book called "Convict conditioning" and my training regimen is based on it. I don't need to go to a gym and all I need is the floor, 2 Olympic rings hanging from the ceiling (the attic door) and my bodyweight 😊. V leg raises, weighted pistol squats, one arm push ups, handstand push ups, assisted one arm pull ups is all it takes to work the whole body. No need for fancy equipment nor gym membership. I wish I could do a proper one. arm. pull up but not yet there. Maybe in my next life 😉
Thanks 😊. Heavy is anything you can't do more repetitions of than 6. Actually that's only the assisted one arm pull ups for me as the rest of them I can do many more. So they are not that heavy for me anymore but it took me years to get to this level and now I'm maintaining the strength only. My goal is to slow the loss of strength. If I can do tomorrow what I could do today I won already 😊
Fatigue on W&W is often mentioned here. I couldn't understand why, when my haemaglobin count was not much below normal. My haematologist's explanation was that it's the energy cost to the body of constantly cranking out B cells at an abnormal rate. Or words to that effect.
So exercise: keep it up but maybe tone it down a notch.
As previous posts mentioned the subject of fatigue often comes up on this forum. If you might be interested, there is a CLL forum on Facebook for those diagnosed at an early age. I don't do Facebook so maybe someone else has more information how to access.
Our_wes - welcome! Good luck with Iron Man - tell how you get on.
Still - I would ensure that you dont have other causes for fatigue - unrelated to CLL. Anaemia, thyroid, sugar, vitamin and so on. Get the heart checked too. Its all GP (Family Dr) stuff. Simple.
I feel its important not to blame CLL for ailing after diagnosis.
CLL fatigue is essentially cytokine related. I had profound bone grinding fatigue and loss of fitness. After 1 cycle of FCR chemotherapy - I felt 20yrs younger! Fatigue is a thing!! Keeping fit essential.
As for endurance exertion... I cannot say I know. Build up to it gradually
I was diagnosed with CLL about 16 years ago and developed some fatigue early on and only got worse as time went on - even after starting treatment with Ibrutinib 6 years ago. About a month ago, I started taking 1000 I.U. of Vitamin D3 and also 1/2 teaspoon of magnesium everyday. The reason I started taking D3 was that I understood it helped minimize the effects of Covid. However, within days of taking D3 and magesium, I was pleasantly surprised that my fatigue was greatly lessened. Also, another unexpected benefit was that
Good Luck! I probably should have noted that before taking the D3 supplement, my Vitamin D level was 31. My primary care doctor told me that a level of 30 is considered "fine", but when I told him I understood that Vitamin D helps reduce adverse outcomes from COVID he told me if I wanted to raise it to the 40 - 50 range, he recommended, in my case, 1,000 I.U. of Vitamin D3. My doctor didn't say anything about magnesium, but my daughter told me to take 1/2 teaspoon per day of the ReMag form of magnesium in addition to the D3. I have found that the combination of D3 and the ReMag ( which I rub into my skin rather than drink it) has helped lessen my fatique. As to sleeping the night through without waking up to go to the bathroom, the D3 by itself worked fine with or without the ReMag.
I have a neighbor with CLL who used to do intense weight training as well as 6-8 hour hikes in our mountainous 7200ft altitude neighborhood before diagnosis. He found that attempting to keep up this pace was too exhausting, and when he cut back slightly he not only felt better his white count stabilized. He has had very little lymphocyte growth since cutting back, and he has one of the "best outcome" markers. I was also an athlete, weight training, hiking, biking, skiing.....I can only do maybe 1/2 of what I used to aerobically and maybe 1/4 of my weights. I have "bad prognosis" markers(Although Xmas gift is a Bowflex, I am looking forward to that, no weighs to drop/hurt myself which had been a problem). So, as everyone has expressed, how much you can continue to do will be highly individual & may or may not affect your disease. I think the important takeaway is to listen to your body even more; I can push and do things but then might spend 2 days in bed because of it. If your doc thinks you are OK during training up to Ironman, and you physically feel good during training & the events, go for it! Regarding work....I think it depends a lot on your job if cutting back helps with the fatigue. And Covid stressors on top of the CLL diagnosis are factors. Luck with moving forward & managing this new disease state.
I was diagnosed 2 years ago and started treatment with Acalabrutinib 2 months ago. I'm a 60 year old tree surgeon and rock climber and generally cope well with hard physical activity. I do however, "hit a brick wall" when I have pushed myself too hard and am left in no doubt as to when I need to rest. After a hard dynamic climbing move it can take me several minutes to recover, compared to 20 - 30 seconds a couple of years ago. I have to consider that I'm not quite so young so that could have an impact! Seems a case of listening to your body and slowly getting the hang of what you can and can't do.
Sorry to hear of your diagnosis. I went 5 years before CLL hit me hard, January of 2020 I started to have problems but due to the COVID my treatment was put on hold. By June I became really sick, my bone marrow was 95% CLL and I was put on ibrutinib. It saved the day but the side effects control my life now. I am still always tired but I never stopped exercising. It helps with my sanity and the endorphins I get helps a lot. Do what you can while you can and good luck to you. Gary
I can’t speak for endurance but I took up running from scratch age 65 after diagnosis and did a 10 k soon after for cllsa. Running keeps me well and sane and I run 5/8 k several times a week.Our cll experiences are all different but excercise keeps me going so do whatever you are able.
I would have your iron checked, they checked mine 16 years ago when I was first diagnosed and had me taking ferritin 3 times a day with orange juice, and it helped. After a few years I stopped taking the ferritin because my hematologist acted like it wasn't important, my endocrinologist just tested me again after all these years, because being tired is my biggest complaint for years, all my iron is very low, and saturation of iron isn't even on the chart, so now I am taking iron again. I have wondered if Cll'ers have lower iron, My mom was anemic as a child, and all these years later I am sure she never had anyone check her iron, she also had CLL at 50 years old, 3 years older than I was diagnosed with it. No one ever wants to check B12, iron, or vitamin D, but when I ask them to, all are always low. I always see it seems most of the Cll people on here are active, and I don't see how they do it. I am always tired and I sleep 10 hours a night.
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