Diagnosed with CLL

Recent diagnosis
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I was diagnosed with Chronic lymphocytic leukaemia (CLL) last week, I have no symptoms and feel absolutely fine. Just feels so strange that I have this but struggling mentally to come to terms with it as I don’t feel ill. Have another review in about 6 weeks but just wondered how others are coping.

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Hello @Lancer27 and welcome to the Forum. I’m sorry to read about your diagnosis.

I’m sure others here with Chronic lymphocytic leukaemia (CLL) will be along to share how they’re coping. In the meantime, if you scroll down to the bottom of this thread, there’s a ‘Related’ section that shows other relevant discussions - it can be helpful to read through those and see how others have felt in the same boat.

Here are a few pages from our website that might be useful:

If you’d like to talk anything through, our Support Services are available on 0808 2080 888 - they’re wonderful nurses who can be a good sounding board when you’re processing everything.

Take care, and let us know how you’re doing,

Ceri - Blood Cancer UK Support Services

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Hello @Lancer27

Welcome to the forum and thank you taking time to send in your post. I’m sorry to learn about your diagnosis.

I am also a Chronic lymphocytic leukaemia (CLL) patient and I was diagnosed in April 2025.

I wondered if I might share some of my experience to date with you. Let me start by saying we are all different so whilst I am not in a position to offer advice, we are on a similar journey and I hope hearing from another Chronic lymphocytic leukaemia (CLL) patient helps you.

I hope you don’t mind me saying that I feel I am able to relate to how you’re feeling to some degree as I also felt and still feel fine, the only noticeable change in my health is I often have a power nap (as I call it) in the afternoon, for maybe 30 minutes to an hour, and most recently I caught a head cold (the first infection of any kind post diagnosis) and it did seem to take longer to shake off the bug, but its now gone thank goodness.

Mentally, I too found things a real struggle, and I decided to take talking therapy via my employers employee assistance programme. This I feel helped me greatly.

The advice given to me by my medical experts was to concentrate on a heathy diet, exercise and a good sleep pattern. Needless to say, you are not alone, there are quite a few people on here with not dissimilar circumstance who will I am confident also share their experience with you.

I sincerely hope that my sharing my experience to date has allowed you to feel confident that there is support out there, not least in this forum.

Please do feel free to let us know how you get on

If you prefer you can always speak confidentially with our support services team for information and support 0808 2080 888

Take good care of yourself

Kind regards

Mike.

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Hello Lancer27

Wanted to stop by and say hello! I was diagnosed with Chronic lymphocytic leukaemia (CLL) in November 2024 and am on watch and wait. It was a big shock to me too, although I’d felt unwell for a long time. It was caught on a blood test for a suspected virus, but I am not clear what was the virus and what was the Chronic lymphocytic leukaemia (CLL) at this point. I just know that feeling very under par had become a bit too familiar.

I also found it a lot to process and to be honest, this is ongoing. I think I’ve accepted it but then I feel more than wobbly. It seems to be something (for me) that needs regular tending: how can I talk more gently to myself, what are the best choices I can make for my health, what is the best way to live now? By ‘best’ I mean the most supportive way.

I was unable to afford private counselling (and did feel I needed some professional support) but found an ACT therapist via cllsupport.org.uk another blood cancer charity. I was given six 1-1 sessions and did not have to pay. I think this is still being offered so might be worth checking. They also run group sessions online and regular meditations with other Chronic lymphocytic leukaemia (CLL) sufferers, which have really good feedback (although I haven’t been to those). This might be something else to investigate. Additionally, they have useful videos (chats with others diagnosed with Chronic lymphocytic leukaemia (CLL)) and run conferences all over the UK, also recorded and online.

I do get tired more easily to be honest, and decided to take early retirement this year (I’m 60). Not sure what is an option for you, although you say that you do not feel ill. I take a fair bit of exercise (very very recommended for Chronic lymphocytic leukaemia (CLL)) which I see as my '‘part time job’ and am highly committed to that (although today its raining and minus three and I decided to stay in instead!).

Hope you get some decent advice here, I know that even ‘just’ meeting others with the same diagnosis can be really helpful. Do keep posting, there will always be someone around to chat or help, its a friendly space.

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Hi @Lancer27

Hope you’re doing ok. I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2021. I had no symptoms at all just enlarged lymph nodes. I found it weird telling my friends and family because I was fine!

I was watch and wait for 3 years with no symptoms at all. Last year I started catching every bug going which then took ages to recover from. My white cell count was doubling quickly. So I’ve now started treatment.

At each phase it’s been scary, I’ve had a bit of a panic, then I’ve kind of got used to it, got it in perspective and carried on until the next development.

You could be watch and wait with no symptoms for years. I hope you are! But just to let you know even if/when you do start treatment it’s not too bad. I can’t wait for it to be over ! but I’m still working, still getting out with the dog, still hanging out with family.

I’d say , be kind to yourself, it’s fine to worry sometimes, give yourself time, and there’s alway people to talk to. And the thing that keeps me going is - it could always be worse :laughing:

Good luck with it all, if you want to ask any questions at all just drop me a message on here

Linda

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Hi Linda, thanks for replying. Still coming to terms with it all. Still feel really good so feel a bit of a fraud. Got my next check up in March so hopefully will be okay.

Mark

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Hi Leigh, thanks for replying. Next check up in March but feeling pretty good at the moment so all feels a bit weird. All the Best Mark