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:
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CLL information - a general overview
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Active monitoring (watch and wait) - explains why not treating straight away is actually the best approach
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Coping with your feelings on active monitoring - specifically about the mental side of things
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 
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
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
I have recently been diagnosed with Chronic lymphocytic leukaemia ('CLL') and have been reading through the booklet that has been given to me.
I’m at a loss about how I feel about the diagnosis and future, I understand that it’s long term and that there’s a watch and wait, which makes me feel better about the condition, but, on the flip side of that there’s the ease of which I could pick up infections etc
The consultant at the hospital hospital stated that I would need vaccinations against things like Pneumonia, Shingles etc, but I haven’t been contacted by my Doctor. Should I be contacting them? Do others have the same fears?
Many thanks
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Hello @Mark19
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 (Chronic lymphocytic leukaemia ('CLL')) patient and I was diagnosed in April 2025.
I shared my experience to date earlier in the thread, and you may have read this but again I feel its important that we remember we are all different, so whilst I am not in a position to offer advice, both you and I are on a similar journey and I hope hearing from another Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia ('CLL')) patient helps you.
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 take power naps (as I call them) 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 initially found things difficult and I decided to go for some 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 try to maintain 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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Hi @Mark19 I am so glad that you have found our support forum.
I also have Chronic lymphocytic leukaemia ('CLL') and and I was diagnosed at 53 and now I am 76. I am also on active monitoring (watch and wait) and you took me back to when I was first diagnosed.
My 70th birthday was my best ever, I feel if I do need treatment there are lots of options available which would not have been there in 2003 when I was diagnosed.
I have learnt over the years to take responsibility for my diagnosis and not wait for others to do things, I will wait a reasonable time and then contact the organisation and be pleasantly assertive.
As for infections I just take reasonable precautions avoiding people with germs, crowded places, be aware of general hygiene like hand washing etc.
Be ever so kind to yourself, give yourself time and the Blood Cancer UK support services are there for you on 0808 2080 888. as @GenesisDevice says. and please keep posting.
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Hello All,
My first time chatting on any type of forum.
My Chronic lymphocytic leukaemia ('CLL') journey and a couple of question.
I was diagnosed Jan 2024, aged 64. The previous Sep I had retired and we had also moved into an old farm house that we are renovating (something to keep you busy as my wife says). My new GP suggested an MOT as I’d not been to the doctors in 8 years. I was given a 2 week referral to the hospital and was told it could be Chronic lymphocytic leukaemia ('CLL') but given some information to read. Like many posts I’ve read, I had no symptoms I thought, although I had started losing weight and got a bit more tied, but we put that down to life style change and working hard, renovating. Because we knew 2 people who have lived with Chronic lymphocytic leukaemia ('CLL') for 16 years plus and are still on WW. and after looking though lots of literature, I was able to keep a positive outlook about having cancer. As we’ve been that busy, renovating the house, gardening, holidays, once a fortnight taking a day off to go hiking in the Peaks and we also foster a 10 year old, I only thought about Chronic lymphocytic leukaemia ('CLL') every 3 months when I had a hospital appointment, or if a lymph node would swell depending on how well I felt.
Things changed in Dec last year when my blood count that had been steadily climbing, suddenly rocketed and some of my lymph nodes became more permanent, especially my spleen. My consultant expected I would be starting treatment within 6 months. Life went on as normal, but with more night sweets and more working through fatigue days, I thought (how wrong I was). I had an appointment booked in April to decide which treatment I would be starting in May. At Easter the man flue I had turned out to be server pneumonia and I had 17 days in hospital, the first 3 in ICU. I’ve got to say the vast majority of staff from support to doctors were excellent. My Haematology consultant popped in to ICU at 19:00 on his way home for a chat, this of cause stopped the planned treatment. Unfortunately, the pneumonia damaged my lungs and I now have the life long condition Bronchiectasis. Also after a scans they found a lump/lesion in my stomach wall. After 2 abandoned and 2 Endoscopies with the possibility of up to 8 weeks wait for biopsy results, they’ve decided that the biopsies they’d taken, probably won’t be conclusive, so a more in depth endoscopy (EUS) is now booked for the end of July. This decision to move forward and not wait for results, comes after pressure from my Haematology nurse, because I cant start treatment until we know if the lump in benign or not. I can’t praise and thank her enough.
The day I left hospital (8th May) I had a blood transfusion as my Haemoglobin count was 78 (uk male range is 130-160). Since then that’s the highest its been, lowest 59. I’m now a member of the Friday bingo club, for those who regularly have transfusions and IV treatments. Last Friday I had my 12/13th units. At the moment my average Haemoglobin count is 71. My bone marrow has stopped producing Neutrophils naturally, so I’m injecting Filgrastim to encourage some production. Dosage depends on my nurses instruction after weekly blood tests, but was daily to start of with.
I thought I’d had fatigue days in the new year, but now I know different. I’ve gone from daily walks and a 12 miles hard hike in the Peak District 10 days before Easter, to struggling to stroll around our village for 20 minuets.
Q1, Is anyone living with low Haemoglobin and any tips?
Q2, For anyone that’s finished treatment. Did your energy levels and fitness come back?
Thanks Steve.
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Hi @SAW and welcome to the forum.
You’ll find everyone on the forum very supportive and happy to share experiences
I’m sorry to read about your diagnosis and it sounds like you’re having a tough time right now
My diagnosis was with a different blood cancer called Myelofibrosis.
Spleen growth was main thing for me at diagnosis
Like you had retired at 59, moved to Scottish Highlands and a house that needed complete refurbishment
We had builders do our renovations as neither of us have the skill set for this.
My treatment resulted in low Haemoglobin levels and periodic blood transfusions.
When they started me in what the Consultant called EPO injections (not that was what they were called). Think what was prescribed for me was Darbepoetin. I know different Haematology teams prescribe different things.
I found that I was able to keep doing walks but had to pace myself.
I was very fortunate to have the chance to have a Bone Marrow Transplant April 2025 thanks to an anonymous donor found through Anthony Nolan.
At present doing well and still need to pace myself.
Hope that helps.
Take care 
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Hi @SAW a great big welcome to our forum family.
I also have Chronic lymphocytic leukaemia ('CLL'), I was diagnosed at 53 yrs old and that was 22 yrs ago now.The one good side to my diagnosis is that it gave me the opportunity to get to know myself and what I wanyed out of life and with whom.
Yes, fatigue was one of the symptoms that led to my ‘out of the blue’ shock diagnosis. Over the years I have learnt to manage my symptoms and realise my fatigue can be triggered by what personally stresses me, emotionally, psychologically, practical and medical aspects. I kept a cause and effect diary so I could see patterns. I have learnt to manage my fatigue, I don’t do evenings, sometimes I need a rest or nap and other times fresh air and appropriate exercise, I am now fitter than I have ever been, I am a great walker like you were, and I do Pilates and dance and exercise to music classes. I just eat an ordinary balanced diet with the odd treat.
I have always been on active monitoring and I have other chronic conditions. My haemoglobin is low and can vary.
Perhaps just be very kind to yourself, give yourself time and please do keep posting
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Hello @SAW
Welcome to the forum
Thank you for taking time to send in your post, my heart goes out to you, stay strong you are not alone.
I am also a Chronic lymphocytic leukaemia ('CLL') patient, and got my diagnosis in April 2025. So, I feel I can relate to your circumstance to some degree. I too am on active monitoring, but mine has gone from every six months to every year as my bloods are in a good place as things stand.
Fatigue is a tricky one, but I find an afternoon siesta solves that, and has no impact on my night sleep (I would be frustrated if it did I must say).
As for tips - I’ve simply tried the trilogy of good food - good exercise and good rest. Beyond that I’ve tried to be super careful to avoid infections (hand washing / face mask (if I feel I need to), sort of living in a covid world if you pardon the expression. I did ask my GP for a gym referral and I go three times a week, and I do work part time at a supermarket, and my line manager has agreed comfort breaks if I feel I need them or to sit and service a till rather than walk about on self check outs.
I’ve not had any treatment so I cant really answer that question, but I have decided to take some complimentary treatment in the form of reiki massage and I also took some talking therapy when first diagnosed via my employers employee assistance programme.
There is a lot of support out there. I’ve just returned from a rest bite break at the seaside with my wife (three nights in Filey) and this was truly brilliant. Not sure if there is anything like this where you are, but its worth investigating. I live in York and we have a cancer charity in the area that does the above things I mentioned as well as a coffee morning on Wednesdays and other activities.
Please do feel free to keep in touch and let us know how you get on
Take the very best care
Kind regards
Mike
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Hi Duncan,
Thank you for the reply.
It sounds like your Haematology team are on top of your treatment and I hope health/fitness keeps improving. I am finding it fascinating how many different types of blood cancers there are and how different people deal with their conditions.
The Scottish Highlands sounds lovely. The highest I’ve been in Scotland is Ben Nevis (lol), but we have holidayed in the boarders and Dumfries area, beautiful country side. Hope your renovation is complete (if it ever can be) and you can start enjoying your retirement.
Keep walking.
Thanks again Steve.
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Hi Steve @SAW
You are right there are so many different blood cancers. Over 100 I believe.
Well done on Ben Nevis. Not something I’ve done even though I enjoy walking.
Yes life in Scottish Highlands good. Lived in Brighton and Hove for 34 years and in larger towns in Central belt of Scotland growing up.
Renovation was completed about a month after diagnosis back in 2023 and very pleased with it.
Definitely enjoy retirement and grateful for the simple things in life.
Take care
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Hi Erica,
Thanks for the reply.
22 years ago and at your young age (I understand Chronic lymphocytic leukaemia ('CLL') is more prevalent in the over sixties) it must have been quite a shock initially. Its interesting to hear that you’ve learnt how to read your bodies signals and act on them. I sure I misread the pneumonia symptoms and that’s why it turn out to be so critical. The irritating thing is, since Dec I’ve cut down on my alcohol intake, in fact I’m now tea total. I was feeling much fitter and was feeling very positive about starting treatment. I keep a diary of numbers like Haemoglobin ect, but will but start looking at how I’m feeling and what I’ve been doing.
Can’t wait to get out in the hills again and may be a pint (as a treat), but I’m sure it will come again.
Keep doing what your doing, you are inspiring people.
Steve
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Hi Mike,
Thanks for your reply.
It does seem wrong to be doing exercise to fight fatigue, but that’s what I’ve been doing walking every morning and I’ve been using some of my wife weights and resistant bands in-between my breathing exercises. Coincidence, I recently had an induction at my local leisure centre. Unfortunately because my Neutrophils (good white blood cells) have been zero for a couple of weeks, my Haematology nurse advised to give the gym a miss. Mornings are best and I do nap in the afternoon and occasionaly go off to bed instead when sitting is tiring.
Holidays are important even if its just a couple of nights. We are having a week in the Peak District during the school holidays. I’ve picked out a cottage that is actually closer to the hospital than where we live. We love Filey, lovely beach. We had a typical summer holiday up there last July, fleeces and hats each time you went on the beach. We live not far from Sherwood Forest. Our son and wife own some land 8 miles away and we camp down there regularly with family and fiends, it has a river running through it, the kids love and you could be anywhere in the country.
Keep safe at work.
Regards Steve.
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Hi Linda, I am new here and read with interest your reply. I was diagnosed start of last year, just had my watch and wait appt this week and looking at treatment end of year now. Like you I do try not to stress and process the information - they mentioned combination of target drugs and I just wondered if anyone here had experience and maybe reassure regarding side effects?
Hi @yoshi29
I am coming to the end of my treatment now which is 14 months of targeted therapy. So just pills - ibrutinib and venetoclax and a few extra pills to balance it all out. Sounds like you might be looking at something similar. I found it a bit overwhelming at the beginning. But once I got into the rhythm of what I take and when, it’s ok. I’ve had lots of symptoms which come and go and have evolved over the months, but not everyone feels the same. Looking back on the year I wish I’d been a bit kinder to myself. I’d say rest whenever you need to, sleep lots , let people run round after you if you need it. If you want to know anything else about it just message me,
Good luck
Linda
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