Cll fatigue

Recent diagnosis
1

Hi.

My name is Julian

I was diagnosed with Chronic lymphocytic leukaemia (CLL) in March.

Current blood test results white blood cell is 37 up from 29.

Haemoglobin 139.

I have been very fatigued recently. However, Consultant said ‘ dont see why as your numbers seem fine, despite white blood cell up to 37.

I’m confused as I am not sure why I am.so fatigued all the time.

Is this usual ?

Thanks

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Hi @Julian5125 and welcome to the forum.

I have a different blood cancer but I know there will be others who can share their experiences.

It must be frustrating feeling so fatigued. It really does impact a lot doesn’t it.

I have also copied in the @BloodCancerUK_Nurses who may be able to help.

Please keep us updated on how you are doing.

Nichola :blush:

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Hi @Julian5125

I had a similar conversation with my consultant as when I was first diagnosed with Chronic lymphocytic leukaemia (CLL) I was so fatigued, still am but have started treatment so think that has a lot to do with it .

I think we all experience Chronic lymphocytic leukaemia (CLL) differently, and some of us experience fatigue earlier than others . I find having a gentle walk each day helps and listening to my body and resting when I can

I hope it settles down for you , please be kind to yourself and take care

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Dear @Julian5125

Welcome to our forum.

I am sorry to read about your diagnosis of Chronic lymphocytic leukaemia (CLL) and your fatigue. Fatigue is a common symptom of Chronic lymphocytic leukaemia (CLL) and can be difficult to cope with. I have enclosed our information on fatigue which you might find helpful to read as it contains lots of useful information and tips to help you Fatigue

If it would be helpful to talk things through, please do give us a call on our nursing support line 0808 2080 888.

Kind regards

Fiona (support services nurse)

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Hi

Its been a while since I have been on here but I thought that I would bring an update, not so much with results or treatment but with a change of mindset. I have been able to reduce my working days to 3 days and this is has helped me with my struggle with fatigue. I suddenly saw my Chronic lymphocytic leukaemia ('CLL') as a gift , a time to slow down and breathe again. Rather than moaning that my consultant didn’t seem that bothered about my fatigue, I have had a complete shift in my thinking. I am still tired most of the time but working only 3 days has given me such a positive boost. My next Haematology appointment is 2 weeks time. I am looking forward to a much more positive discussion with my consultant, regardless of what the results may be.

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Oh, @Julian5125 wow, yes, I really agree what a difference a change of mindset can make, I call it ‘reframing’.

I am so glad you have been able to reduce your working days, to pace yourself, more..

I found it really helped me getting to know my fatigue, the cause and effect. I did a diary. So now I can make decisions whether to do something that I know will cause my fatigue to set in.

I have had Chronic lymphocytic leukaemia ('CLL') for 22 yrs and I learn something new about myself every day. My bonus from my diagnosis is it gave me the opportunity to assess what I wanted to do and with whom.

Thank you for your post, it has made me think, really look after yourself and please do keep posting.

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