Aneamia and cll

I wonder if anyone else can advise on anaemia symptoms that creep up on you on w&w cll? I find I get slightly breathless and am v listless sleeping 18 hours in 24 …should I say something to my consultant or is this idle-itis brought on by not doing much during shielding?

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@Annie78. I suspect many of us are suffering idilitis while under lockdown…it is hard to get excited about housework or having a clear out. However, a chat with your consultant would probably be sensible as it could be a change in your illness, and your consultant would be able to check. Best wishes

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Hi @Annie78 and @Pisces56

It’s so lovely to hear from you both, hope you’re doing okay?

@Annie78 I’m so sorry to hear of these symptoms you’ve been experiencing, that does sound uncomfortable for you! But you have done absolutely the right thing checking this.

Annie, you may have across this already? But I thought I would include a link to our booklet on CLL: https://media.bloodcancer.org.uk/documents/Chronic-lymphocytic-leukaemia-CLL-Blood-Cancer-UK-info-booklet.pdf. As you will see between pages 24-25, it talks through the symptoms which can occur for anyone affected by CLL. Page 15, also explores how anaemia can be brought on by CLL due to its impact on the immune system. I hope this is helpful to you Annie?

We would absolutely echo @Pisces56 in saying that we’d encourage you to talk things through with your treatment team. As you both mentioned, it can be tricky sometimes to differentiate what might be a sign of your condition or what might linked to what has been an incredibly difficult lockdown period for many- we’d always advise people to check to be sure and for their own peace of mind. Be it concerns you have, be it changes in symptoms, new symptoms, progression of symptoms- please never hesitate to get on touch with them.

Hope this helps, Annie, do you have any further questions around this? How are you coping in general?

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Generally Im fine …just the lethargy/fatigue thats frustrating… I get up and have a few things I would like to do in mind …then after standing to do breakfast I have to sit down! And mowing the lawn means Im exhausted

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When was the last blood test? Its important to rule out anaemia as the cause of this. But fatigue can definitely also be casued by CLL even withotu anaemia and yes psychological symptoms can make it worse, as can infection or inflamation. Definitely worth trying to get a handle on what is causing this for you.

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Last blood test yesterday and hematologist appt next Wednesday …I was just testing the water…I dont want to seem to be making a fuss !

Annie, where our health is concerned no question is too minor, and you are not making a fuss. Those that cause the most worry are the ones who soldier on and sometimes leave it too late for a treatment plan. Get your questions written down, and if it helps, write how you have been feeling ready for your appointment. I await to hear how you get on next week.

@Annie78 Hi Annie, that’s so reassuring to hear you have an appointment next week, do let us know how you get on. Ah of course, I think sometimes it’s human nature to feel like this, but we always do encourage people to see that in no way are you a making fuss or wasting anyone’s time- you did absolutely the right thing checking in with the forum community. And I hope that your appointment next Wednesday will give you further clarity.

And @Pisces56 makes a really good point about writing things down, this can definitely take the pressure off you trying to remember everything you’d like to say.

Please do remember Annie, we are here for you before and beyond your appointment, so please do keep reaching out