Being newly diagnosed myself (2 weeks ago) I can't offer any information other than to tell you this group was my saviour in the first couple if days ...... They calmed me, pointed me in the right direction for correct information and just made me feel positive. They continue to be my support when emotions take a dip or confusion sets in so please utilise the group as much as you need to.
this is a really difficult time for you and there is a lot to take in.I just wanted to respond straight away to let you know you are not on your own. I can't answer your questions re blood results but can point you in the direction of some really good articles and help (link below). Chaya Venkat's husband was diagnosed with CLL and she has written some really good articles (plain english) to help people understand CLL, how to interpret your blood tests etc. whilst it was written a few years ago most of what she has written is still relevant today. These will also equip you with the questions that you can ask the haematologist and how to understand the information they will give you.
I was diagnosed with CLL 15 months ago. First thing is don't panic or be scared. It is a hugely complex disease, but most of us have lots and lots and lots of time to get to grips with it....just as well really!
Whilst CLL is not curable (currently - it is a big research area with lots of new breakthroughs), most of us will have long periods (many years) of Watch and Wait (so monitoring bloods) followed by a treatment that brings us back to square 1: then more Watch and Wait. I like to think of the disease as being on an escalator you can not get off, but that a treatment will push you back to the start (bottom)....so hopefully you never reach the top. So, I am hoping to die with the disease, not of it (if that makes sense)...and I am 54.
There is useful info on the right hand side pinned posts, including the CLL Support Association site understanding blood counts.
Do ask questions on this site, as loads of us have experience to share (we are all following an individual path...there is no one path to this disease...)
Further to the welcome you've received above, you don't actually have a diagnosis of CLL yet or for that matter even a diagnosis of leukaemia - that's the haematologist's job and hopefully you won't have to wait long for that appointment. You could still have a raised white blood cell count from an infection. (Your lymphocyte result is high, but until more testing is done, you won't know which lymphocyte type is responsible and which leukaemia type (if any) is causing that increase). As Immie has said, the CLL Topics/Updates site contains lots of useful and still current information. The relevant article for you right now is:
This includes an important table 'Immunophenotypic Fingerprint CD Markers for Variety of B-Cell Cancers' that is used by your haematologist to determine what leukaemia (if any) you may have. This only requires a special test on a simple blood sample, called a Flow Cytometry test. You may not end up having a bone marrow test, particularly given you are not aware of any other symptoms.
If you are diagnosed with CLL, which is likely if you do have leukaemia, as it is the most common adult leukaemia, this second article will prove a useful introduction:
Meanwhile, while you are waiting, do ask any questions you may have and should you end up with a CLL diagnosis, you'll know you've found a helpful site to assist you to make the best of your diagnosis,
You have a raised white blood cell count ... and your GP is sending you to see a haematologist ... that's the GP doing their job.
The next step is the responsibility of a haematologist/CLL consultant ... your GP is not qualified to second guess what the results will mean.
Your haematologist will explain what your blood tests indicate. You don't think you have other symptoms, which is good, why was the blood test taken in the first place, was it just routine ? ...
As you are waiting for your haematologist appointment, take some time and browse this site, there is a wealth of hands on experience here, there are no stupid questions only people willing to help so don't be hesitant to ask about what may be troubling you, you are not alone in this.
Of course you are feeling scared/anxious, I remember it all too well.
I was diagnosed with CLL aged 47 in 2006, and have not as yet needed treatment.
Thank you all so much for taking time to reply . In answer to your question yetgo
It was a routine blood test. I asked my gp for the print out of the test. At the top of the page it said Mature lymphocytes with smear cells chronic lymphoproliferative disorder is possible.
What you all say makes sense ....... On one level I know I must see the Haematologist as he is the expert but I feel very panicky . I have looked at the web sites you all have suggested these have helped. Another two weeks to wait before my appointment .. Of all days April the first. Best wishes and thanks TerryB
Hi Teryjb. As a newbie myself I find the waiting the hardest. I hope your appt comes through soon, and that you get some answers to your queries. people on this site really do understand. All the best.
Hi Terry, welcome at a worrying and confusing time for you particularly as you haven't yet had a firn diagnosis but clearly your GP suspects there's an underlying reason for your raised blood counts. First if all your WBC should be in the range between 4 - 11 and your lymphocyte count 1 - 4 but we all vary and raised levels can indicate a self limiting infection. If after a period of time these levels remain high, the doctors start to think there may be an underlying cause like CLL. So the haematologist will carry out further testing called ummunophenotyping to conclusively establish whether you have the condition. This is done with a blood test
but he'll decide whether a bone marrow biopsy is necessary and perhaps a CT scan to see how your internal nodes and spleen are looking. It is more unusual in the UK to have a BMB at this stage but Consultants work differently.
You've had some fantastic advice from the others Terry and I know you'll read some of the links and wonder what on earth they're talking about! We've all been there. I thought a Lymphocyte was an alien material from a Star Trek planet only two years ago! I was diagnosed (dx) 22 months ago and it's been a mighty big learning curve and a roller coaster of emotions.
I love Andy's analogy with the escalator that you never quite get off but there's so much work and research going on that I feel sure at some point we'll all be able to leap off that 'escalator' permanently in the non too distant future! I'll stay on just till it gets to the handbag department... So don't get gloomy and stay optimistic whatever the diagnosis. You can live with this and you can cope with the challenges though I admit it's not the preferred path for any of us.
I view the condition like having a conscripted army trying to fight a battle they're struggling to win because the fighters are useless lymphocytes and the battle is infection. With CLL, our fighting machine cells (describing it very simplistically) become compromised and whilst they increase in numbers and reek a bit of havoc and clog en-route in the body, they're essentially useless. Eventually we get so many of these ineffective 'fighters' that they have to be wiped out to allow a new and more efficient crew in. That's the point we need treatment but it's early days to start thinking about that at the moment. (That's for next week's reading!).
And forgive me for the unsophisticated description but at this stage it just might help.
Terry you might find this document useful. Some of it might be a little dated and perhaps not always country compatible but it's sound, relevant and easy to understand. I found and still find it very useful.
As others have said, CLL is very complex and you could fry your brain trying to get down to molecular level of understanding at this stage.
For now your levels are not desperate (though they signal something is not right) and from what you say, you're feeling ok in yourself. All that is positive. Try not to get too hung up on numbers, there are many other factors to consider in this condition too.
Please let us all know what the Consultant says after your appointment and whilst we hope it's not CLL, we'll be waiting with whatever advice and support you need if it is.
One of the best booklets on CLL is the companion publication to the one Newdawn mentions from the Leukemia and Lymphoma society in the U.S. Skip over the parts that are U.S. specific, they don't apply...
Hi, welcome to the web site. I had a similar experience last year just wanted to reassure you that if you need a bone marrow biopsy it is nothing like as bad as people will tell you. It proved to be a pain free experience with a little tenderness for a week afterwards if I touched the site. Once you get over the shock of a diagnosis life returns to normal. This forum is a great support and somebody will always point you in the right direction. My best advice is find a specialist haematologist that you can trust and you will feel much better .Also try and get to a CllSA meeting its very reassuring to meet other people with CLL and discover we are all doing well. Best of luck Beth
Bone marrow biopsy aren't required to diagnose CLL clinically in most cases. All that is needed is a blood draw and a flow cytometry, to separate CLL from other lymphomas.
Hi Terry and welcome to the site although I appreciate it's a welcome you would rather not have.
I will just reiterate what others have said and say don't panic, easier said than done I know. I was diagnosed on valentines day last year and yes emotions run high and my first question was when am I going to die!
It was with the help of sites like this, Macmillans and the CLLSA that I came to terms with it all and decided life goes on and it aint going to beat me. There are great people here with good advice and we are used to helping people pick themselves up when feeling down.
Use it to educate yourself it makes the Haematologist job easier when you are knowledgeable and you know the questions you want answers to. Also good advice is get to a CLLSA meeting they are informal but informative and you get to meet new friends, I am hoping I have a place at the Cambridge meeting.
Your routine blood test has picked up something to investigate: as said above, the haematologist will be the expert (this is beyond GP, who has done their job in referring you) in going forward and if you do have CLL, you might well see haematologist more than your GP. Lots (Most?) of us did not know we were ill, and routine blood test then uncovered something no-one expected - in my case, it was a routine blood donation, where they said 'we are not taking yours, go see GP'. Reminds me of Monty Python....'No one expects the ....etc'!
Hi terryjb
hope that by now you have been able to calm down and not be so scared, honest we have all been there and you'll find you do have time plenty of time to think and sort yourself out. Take one step at a time, believe me there are far worse illnesses than this. Newdawn's down to earth post says it all, as do all the other posts offering advice and reassurance.
Just to say how fine all this is - what a support group. It has helped me enormously in these first few weeks, and still does when I start to feel depressed. And I love all the metaphors, the escalators and the fighters...
I know what you are going through as i had the same conversation with my gp 16 months ago after a routine blood test showed my white blood cell count to be 24.6. I was sent for more blood tests and a scan of my spleen and liver. I was diagnosed with CLL, and put on watch and wait with regular blood tests and check ups at the hospital. To date my count has risen to 26.7. I have not had a bone marrow test or a ct scan as it was not deemed necessary. This forum is fantastic and will give you all the support and help it can, it has certainly helped me.
The advice re articles and websites to read is very good and the fact that you are not alone and are among people with the same or similar fears and anxieties is a massive help.
You are not alone in your reaction so the best advice at this time is to repeat to yourself "I have time, I have time to plan, I have time to think and evaluate my situation" There is a very wide spectrum in the way CLL behaves, if that is indeed what you have, so you may get lucky and be in a subgroup where it will remain indolent and slow to affect your life. New drugs and better use of older drugs are on the way should you need them which may be years away. Take the time learn and let your condition be your teacher for what is important in life.
Do take Cllcanada Chris's advice that a BMB (Bone Marrow Biopsy) is not necessary to diagnose CLL. The finding of "smear cells" (We in the US often hear the term Smudge Cells is indicative of CLL but you need testing of the blood only to confirm and know that it is not MCL (Mantle Cell Lymphoma) which is rare but can be misdiagnosed as CLL.
I was diagnosed 6 mths ago with almost the same blood count readings as yourself. Have been told my readings are pretty low and likely to stay that way for many moons to come. Am seeing the haematologist every 4 months now, told no need for marrow biopsy or ct scan yet. I know exactly how you feel, I was also very scared. The worst time for me was the time you are going through now, waiting for that appointment. My biggest mistake was trawling the net and reading some very outdated and misleading info. This site was my salvation, these are the people who know the facts and the best links to read up on.
Try not to get too worried at present, I know that is easier said than done, however for you the jury is still out. Even if you are diagnosed with CLL try not to get worried. Everything moves at a very slow pace normally.
When I was diagnosed, at a routine blood check much like I think you stated, my WBC was 64.2 and my ALC was 58.4. Whilst high for normal some here had far higher readings before treatment.
If it turns out to be CLL this community has a great wealth of experience, from those who were diagnosed many years ago to newbies. Comments and experiences are shared between us all, do not be afraid to ask. A word of caution, the internet is full of information, not all of it reasonable, so if you do hunt around for infomation and find something scary check with your local medical team or ask here.
I hope you tests go well and you are cleared, either way you have friends here.
It's very early days for you. Like most people I had a routine blood test (for prostate) which revealed a WBC of 28 in February 2010 and diagnosed as 'suspected CLL'. It was three months and several more blood tests later and after a BMB, that it was confirmed in May 2010.
So don't panic, read up on the links posted above and once you come to terms with it I'm sure you'll find that CLL is something you can live with.
Is there anyone out there who has had similar results to my husband? Last August he happened to mention to his doctor that he had a bit of back ache...blood tests sent off. The results showed that he has CLL and Prostate Cancer. He has swollen lymph nodes in his neck and groin and just over 3 weeks ago underwent open surgery to have nodes removed from abdomen and groin. Still waiting results to see if prostate cancer has spread or if removed nodes were coming from CLL. He's getting stronger,but of course has to get over surgery and he is tired.We have a walk every day,which we extend each time. We are both very positive and praying that the removed nodes are from CLL. It would be good to know if anyone else is in our position and perhaps we can encourage you,and compare notes.
I was diagnosed 6 months ago and I too have felt quite anxious at times.
I have found the CLLSA extremely helpful. They sent me a PDF of a recent newsletter in which blood tests and all the related jargon were explained quite clearly. I hope this helps.
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