Thank you so much for the information. I received a call with an appointment. Although it’s not within 2 weeks but 3. I’ve spoken to various private hospitals and I can’t get an earlier appointment so it sounds like everyone has the same idea ! Just a quick question about Lymphocytes on blood checks. I’ve a copy of my blood test here and am struggling to get my head around it. It says my total white cell count is 25.8 and Lymphocyte count 18.8. Red cells 3.28. The notes at the top say Lymphocytosis with smear cells present. Likely lymphoproliferative disorder. My haematology appointment is almost 2 weeks away. Can anyone recognise and understand these figures. All I know is they are to high and the Dr is concerned its a blood cancer. Again, thank you 
Hi @Nik I have responded to your other post.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) with P17 deletion.
Generally Lymphocytes should be in the range 1.0 to 4.0. It really depends on the number that are retained in your glands as these don’t show up on your blood tests. Originally mine were around 15 and when I started on zanubrutinib the Lymphocytes shot up to about 80 as they were released from my glands. I was also put on to Zanubrutinib which I am still on. The good news is that the Lymphocytes have stabilised at the low end of normal. Furthermore a recent bone Marrow Biopsy showed no sign of Chronic lymphocytic leukaemia (CLL) or P17 deletion.
Hi John. Thanks for giving me all that information. It’s so complicated!!! I suppose I will find out and hopefully get answers in a couple odd weeks. I am going to have to make lots of notes to try and understand all these specific terms ! Hope your doing ok and thank you.
Helpful information re release from glands.
Hi Nick, I’m in a similar position to you. Got my Haematology appt on the 9th. My Lymphocyte count is above the reference range - I’ve been feeling something isn’t right for 21 months and have finally got somewhere - Somewhere I probably would rather not be.
Hi @Nik If you don’t understand anything at your appointment please do ask for for it to be put in layman’s terms, Medical people speak another language, medical speak.
Perhaps write all your questions down in readiness.
Look after yourself and please keep posting
Hi. It’s the not knowing that’s difficult for me. I’m sure once I know I will feel better. It’s knowing exactly what and when to plan things. Especially with a family and the holidays coming up. Fingers crossed both our appointments go ahead x
Yes, @Nik it really is the not knowing isn’t it, feeling out of control of the way forward and family plans is horrible.
Whoever said patience is a virtue, well I am not a patient patient !!!
Yes fingers and toes crossed for you and @BiffBoff
Look after yourselves
Hi Nick, how are you progressing?
Please share your thoughts.
Hi. I got a diagnosis. Chronic lymphocytic leukaemia (CLL). I’ve an appointment now on Saturday for a scan of my spleen. I’m guessing after those results I will know more about if I need treatment or be on watch and wait. I’m still getting used to it really. I’ve stopped reading and to be honest feel a little numb about it. I feel like I’ve accepted it but I’m living life totally ignorant to it. Almost rebellion, if that makes sense. We’ve had a family holiday. Im eating and drinking all the wrong things and organising my life. It’s a strange feeling. Thank you for asking x
Oh @Nik join the club, I have had Chronic lymphocytic leukaemia (CLL) for 19 yrs and always been on watch and wait, I am a very lucky girl.
You described my thoughts and feelings swirling around inside me at diagnosis, and yes, often conflicting, almost rebellion.
I actually felt like trying to pull the Chronic lymphocytic leukaemia (CLL) out of me and I felt in a bubble with the world going on about me.
Yep, I came home and tried to organise my life, my will and funeral music etc.
glad you are having a scan on your spleen on Saturday.
Just give yourself time to try and make sense of it all.
The Blood Cancer UK support line and website are there for you, there is a lot of information and the support line is on 0808 2080 888.
Please do keep us updated and look after and be very kind to yourself.
Not too sure where this should go but put it in here anyway…
Was picked up for suspected Chronic lymphocytic leukaemia (CLL) (>4 lymphocyte count), about 2016., and put onto W&W. Blood tests every 6 month , and was told to review by the consultant when it went over 8.
JoIned here in 2021 - 22 due to worries about Covid and the jabs.
Since then I’ve had Covid 3 times and 6 jabs now - including all types of vaccine. No real problems apart from the 2nd time when I developed a mild form of long Covid (I had tablets from hospital, but did not take them as was so mild - how stupid), and as a result I then contracted long Covid - Mainly in my ears and feeling aa though I had a head cold and my immune system was continually fighting it off!. (Continually felt as if I had been swimming.)
I think that after 18months I have just about got rid of it.
So what of my Chronic lymphocytic leukaemia (CLL)?
About 2020 my lymphocyte count had reached 7, steadily increasing each blood test… as I was told would happen.
However in the last 4 years it has not increased at all , and I was shown a graph that it had flat lined since then.
So that is good news, that I am apparently in remission.
So I went back to the GP to ask why, and they were equally puzzled, but had noticed that my platelet count had now dropped. to 138 from above the normal low limit of 150. As I was about to have an op on my eyes for ‘weteyes’ syndrome she wanted to be sure so got a visit to the haem consultant for me.
Just had it… and she confirmed that I had gone into remission for Chronic lymphocytic leukaemia (CLL)… but that my immune system was weakened, and that if my platelet count dropped further, it would lead to more complications, but I should be ok to have the op if it was above 50, and not to worry at all if it was above 100.
So it seems like good news , and she stated that she had seen a few patients who had followed my trend , with my Chronic lymphocytic leukaemia (CLL) trend apparently being halted about 2020!!!
Not sure it will help people on here (hope it doesn’t worry anyone also), but it perhaps gives a bit more insight (and possibly hope!) to people who have the condition and what some of the numbers mean to you.
As always though speak to your consultant,
Oh by the way I am now 81 and have recently found that my stamina is returning as I play 9 holes of golf 3 times a week, and I feel less tired on finishing… so what has changed? Hoping to get back to 18 soon. Could it have been the jab?
anyway thought I would share it and | hope it gives some cheer and hope .to people on here…i
Hi @daveOsprey great to hear from you again and thanks for running through what has happened to you, it was very interesting.
I am impressed with your golf.
Please do keep updating us and let us know when you get back to 18 holes.
Really look after yourself