CLL and fatigue

Active Monitoring (Watch and Wait)
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Hello everybody.

Just reaching out to others, in particular if you are a Chronic lymphocytic leukaemia (CLL) patient on active monitoring.

I was diagnosed in April 2025, and I am on active monitoring, due my next blood test in February 2025.

To date I have not had any noticeable impacts of the condition, but I have had aching legs, and I’ve noticed others posting about the same, more precisely my right knee, but physio does seem to be addressing that. The only other effect I’ve noticed is fatigue. I’m semi retired and now work part time (12 bours a week over 2 days) so I’m not really able to say work is the root cause of the fatigue. I’m quite fit and heathy, with a good diet and gym three times a week. The fatigue is noticeable in an afternoon as I will often drop to sleep in the room for 30 minutes to an hour. This has no impact on my night time sleep - as I have my body clock set to 10pm whilst 6am so I get a good 8 hours or so.

How are others getting on with fatigue ?

Thank you

Mike.

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Hi Mike

I have Chronic lymphocytic leukaemia (CLL) and was diagnosed in November 2024 when I was 59. I also live in York.

Its always interesting (and often comforting) to compare notes.

I have had intermittent leg pain for about 18 months and really do think its to do with the Chronic lymphocytic leukaemia (CLL), not sure why but cytokines are often cited as possibilities in the medical literature. My legs can feel very heavy and walking distances can be a trial, its a horrible sensation. However, I havent had that for a while, maybe a few months. Its always worst in the summer for me (as is everything!).

Yes, also have fatigue. I took early retirement to deal with it. Some days I feel fairly good, but I am unreliable and the stress of a job would knock me a bit sideways I think. I am focusing on exercise too (running, dancing and chi gong) and there’s no way I could do that AND work, even part time (especially with a commute). I am lucky that my DP is helping me financially and I have some savings, although we are also very thrifty and have had to eschew foreign trips/meals out etc, I am not able to live in that sort of world and not work.

I sleep pretty well too, probably better than I did a few years ago. But I run out of charge very quickly. I used to be able to walk two miles, do my shopping and walk home again, but these days I have to drop one of those balls! Day trips are enjoyed but have to be bookended by days at home, that sort of thing. I have also given up on doing anything in the evening as going to bed at toddler-time has become one of my ways of coping, it really makes such a difference.

Overall, I think I am coping okay with watch and wait, but it has triggered a lot of other stuff that is not easy to deal with. I’ve lost several close friends over the past few years, another in November, she was only 56, and I feel that this face-to-face with your own mortality is very sobering and can be difficult to manage.

I feel that this board is like a generous aunty or uncle and I check in regularly. I don’t know anyone else with chronic health issues and hearing other people’s stories and following their journeys really normalises it for me.

Always good to hear from a fellow walker of the Chronic lymphocytic leukaemia (CLL) path!

xx

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Hello @Leigh65

Thank you for your kind response.

Fortunately York is flat, so no difficult hills to handle on our aching legs.

I have thought about going to bed earlier, but I know I would not be able to settle, so I’ve told myself that 10pm is bed time and I stick to that for the most part.

You’re right, it is good to touch base with people in similar situations, and receiving your response was wonderful, so again, thank you.

Please do feel free to keep in touch and maybe we can ‘swap notes’ as it where as we navigate the Chronic lymphocytic leukaemia (CLL) journey

Thank you

Mike.

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Hi Mike

Yes, York is as flat as the proverbial pancake, although when I’m on my bike I am not always so convinced of that!

Must admit, am a bit felled by the weather at the moment and didnt get out for my run today. I will make sure to go over the weekend instead. I think exercise does help and the research seems to underline it as especially important so I am usually very committed!

Happy to swap notes as we traverse the Chronic lymphocytic leukaemia (CLL) path. Maybe we can carry on here if you like. I know a few other people have sort of ongoing threads.

L x

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Hello there @GenesisDevice and @Leigh65, hope you don’t mind me popping in without sharing your York and Chronic lymphocytic leukaemia (CLL) experiences! I do know fatigue though since I live with chronic Polycythaemia vera (PV), and thought you might be interested in this meta-analysis about cancer-related fatigue (CRF) that helped me after my diagnosis: Cancer-Related Fatigue: Causes and Current Treatment Options - PMC

According to this research, published at a time when the NIH was reputable I should add, most people with cancers also live with fatigue. As we know, it’s not just simple tiredness. If only!

“Among survivors undergoing active treatment, CRF rates vary between 62% and 85%, of which 9% to 45% reported moderate-to-severe CRF.”

You’ll see that the findings from all the CRF research above shows that we’re already fending off fatigue in clinically proven ways by keeping active in whatever ways we can. Slow exercise like yoga, tai chi and qigong are also shown to benefit CRF.

“Psychological interventions have been shown to be modestly effective in reducing CRF, second to exercise interventions.”

So therapy can also help undo some of the fatigue, which I can attest to thanks to having continued having my own during my diagnosis and since. I think of therapy as a place to clear my thoughts, much like how deep sleep can clear our bodies of toxins.

Anyway, perhaps that’s enough to be thinking about—no need to further fatigue ourselves getting in and out of the weeds of all this!

Oh and yes to earlier bedtimes! I used to think I was an owl but actually I’ve grown to love waking with the sun and having a relaxing bedtime routine. Wish I’d figured this out before all this CRF kicked in!

Be well folks, keep warm.

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Hello @Duncan and @Leigh65

Thank you both for posting on the forum thread

I would be delighted to stay in touch as we all navigate the winding river that is blood cancer

Take good care and i hope to hear from you soon

Mike

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Hi Mike aka @GenesisDevice

Thought I’d drop by and ask how 2026 is treating you, how is the fatigue?

I must admit, I feel like lead most mornings but once I get going, I can keep going (although I dont go out in the evening any more). Lots of pacing involved. Am grateful I dont have to get up to an alarm although there are some morning events (keep fit at 9.30 etc) there isn’t the compulsion that I must go, so I think that’s easier, not so much stress so I actually sleep better.

I think (somewhere) you also mentioned looking into complimentary therapies. Do you know about the Levenson Centre in York? No-one told me about it, I found it through my physio (who was attending to my shoulder issue at the time). They offer various therapies free to people with cancer. I am on their waiting list but havent found a time I could make yet (not with all the exercise I try to do!).

Hoping today is a good day :slight_smile:

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Hello @Leigh65

Thank you so much for touching base, it’s very kind of you.

Fatigue is at the moment manageable, as I often take a nap in an afternoon for thirty minutes to an hour - sometimes a little longer. Clearly I need this as it is not impacting on my night sleep.

My part time work can be a challenge, I only work two days, twelve hours in total, but I finish at 10pm and then have a thirty minute drive home. The following day I really feel it, but again, a restful day soon tackles that.

I do go to the gym three times a week, but I agree with your point that the fact that there is no rush to be there first thing in the morning gives me the flexibility to go later if I feel like it.

As for complimentary therapies, yes I’m still investigating this and have made a couple on enquires. One chain of thought I’ve had, not that its a therapy, is to take up Tai Chi. I feel that this will allow me mindfulness coupled with some physical benefits, but I would lobe to hear what things people have tried.

How are things with you ?

Thanks

Mike

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Hi Mike

Am getting through!

I had a small chi gong practice before my diagnosis. Chi gong is a sort of uncle to tai chi, definitely part of the family tree. Then I hurt my shoulder and the exercises from the physio replaced the chi gong (I only have so much time!).

There is a lovely routine called the Shibashi, which is Chinese for 18, as it contains 18 movements. Not sure if you’ve head of it? It’s very slow and soothing. I learned it locally with a teacher who is no longer practicing but it’s very easy to find teachers online and not onerous to learn. I used to do some online classes with a teacher from Cheltenham who was great, her name is Karen Soo, just google her… Actually, I’ve just googled her to see her latest offerings and booked a class for next week, hahahaha!

Am still running although sometimes when its -5 and has been raining all night I dont exactly leap out of the starting gates.

Onwards though!

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Hi @Leigh65

I’ve discovered a Tai Chi class not far from where I work and I plan to get in touch with them and give it a try. Having read a little about the benefits, I feel confident it will be good for me going forward. That having been said, ill take it slowly and see how I feel week on week.

As for running, I did get up to 5km on the treadmill, running for 1 minute then walking for 4 minutes then repeating this, but I starting to get some pain in my knee so after some physiotherapy I’ve stepped back to 3 or 4km and just walking.

Its been suggested by a friend of mine that Reiki may be beneficial but I’m not sure. Have you heard that this can offers benefits or otherwise ?

Thank you

Mike

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Hi Mike @GenesisDevice

Am not a fan of reiki, but its a personal thing, it makes me anxious! But I think I mentioned The Leveson Centre in York, they offer free complimentary health sessions to people with cancer and reiki is on their list. You might want to check them out.

Good to hear you have a Tai Chi class sorted out, I agree that it looks very beneficial. I wish had I 48 hour days and I would do everything!

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Hi @Leigh65

Yes - I’ve checked the Leveson Centre web page and I know where it is. I seem to remember I was referred there by my GP when I asked for my gym referral. I am definitely going to pop along and get involved in some of the activities and speak wit some of the people.

Thank you

Mike

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