What is CLL?
Well, CLL stands for ‘chronic lymphocytic leukemia’ and if it’s the first time you’ve come across this disease, well that’s quite a frightening sounding name.
Leukemia just refers to these cells involving the blood, so when we do blood tests we find them on people. Leukemias are of course a type of cancer, so that’s a bit of a difficult start for new patients, but let me tell you about the disease and try and give a little bit of reassurance from the beginning.
It’s a cancer of white blood cells and a particular blood cell called the B lymphocyte. That’s a clever cell that makes our antibodies and it’s a key part of our immune system.
But we know, sometimes as folk gets older, the control of these cells can go a bit wrong and sometimes patients can make too many of these B lymphocytes and as these lymphocytes grow in number, while they appear in the peripheral blood, that’s in the blood that we can test in the clinic, often patients feel completely well and that’s the strange thing about CLL.
You can be diagnosed with this condition and feel absolutely normal and then of course it’s really shocking for the patient and their family and friends because they were completely well one minute and the next minute their doctor’s talking about leukemia.
But it’s very important to understand that for many patients with CLL, it’s found by chance and it actually changes very slowly over the years.
Difference between CLL and SLL?
So, apart from observing it, well, many patients often don’t really need much in the way of treatment. We’re commonly asked as hematologists, what is the difference between CLL and SLL?
Well, it does seem a bit confusing and even to our medical students, it takes five minutes going through to make sure we’re clear with the difference. It’s a disease caused by the same type of cell but the cells live in different parts of the body.
So whereas chronic lymphocytic leukemia, CLL, is a disease primarily of the blood, so the cells whizz between blood and bone marrow and sometimes involve lymph nodes as well.
SLL, which is small lymphocytic lymphoma, is the same type of cells but these like to live in lymph nodes.
Patients with SLL commonly present with swollen lymph glands, perhaps around the neck, or the groin, or in the armpits, but don’t actually have the cells floating around in their blood.
So in contrast to CLL, where we commonly see high lymphocyte counts in the blood, most SLL patients have a normal white blood cell count.
But otherwise, they’re the same disease and they get treated with the same different regimens and we hope with most of our patients to have very long periods of good health. Now not everyone is as lucky with CLL, of course.
We’ve talked about how many patients have very few symptoms, but CLL patients gradually can become less well with their condition.
CLL patients can sometimes become more prone to infections, particularly chest infections or sinus infections, sometimes they need special rotating antibiotics, even immunoglobulin infusions.
Which are a special help that can be given if CLL patients are being particularly affected by chest infections?
Patients can also become more tired and this really is a difficult symptom for many patients, this profound lethargy that isn’t relieved by rest. Sometimes that’s the symptom bad enough to even take people into treatment.
Other symptoms can include night sweats, sometimes these can again be bad enough to affect someone’s quality of life because they simply can’t get enough sleep and of course that can feed in on the tiredness.
Patients can lose weight. Some patients can develop more troublesome lymph nodes that are not just cosmetically upsetting but actually are pressing and they find them quite uncomfortable.
Sometimes the spleen can enlarge and likewise, an enlarging spleen can press on the stomach, sometimes people just don’t feel like eating and that can contribute to losing weight.
So you can see how all of these symptoms can gradually build over time. Often in CLL, they can fit together with patients developing a higher white cell count and as the white cell count goes up, often in the bone marrow, which is the factory for normal blood.
This bone marrow works less well so patients become more anemic, namely, they don’t have enough of the red cells floating around to carry the oxygen.
As that happens, they get more tired, a bit shorter of breath doing things and their energy levels and joie de vivre (joy of life), so to speak, all just gradually tails off.
As the white cell counts go lower, the patient can get more problems with infections and as the platelet cells, these are the little cells in the blood that help make blood clots, as they go lower sometimes.
Patients notice more bruising, maybe mouth bleeds or nose bleeds, but thankfully with CLL most of these symptoms do come on fairly slowly and patients will be able to discuss them with their doctor.
And as the symptoms get more troublesome, well, that’s an indication to start treatment. I’m often asked by patients about living with CLL and it is really difficult as doctors to advise patients because my patients say to me.
it’s quite a psychological battle, particularly in those first few months because imagine you’re a well, happy, just retired businessman and suddenly you’re given this label of having leukemia.
Every patient goes through quite a period, sometimes lasting a few months, of psychological upheaval because they’ve gone from well to having a leukemia label and knowing someone like me, a consultant hematologist, all in a short period of time.
It really does take a bit of time to come to terms with it. And also, because we don’t dive in and do something, I think that can add to some of that early psychological stress because you know what it’s like if you’ve got something, you’re going to fight and take on and have a battle.
Then, there’s something to focus on, but that’s one thing about an observational period – actually, you’re taking this on but over the long term.
I think that’s the thing with CLL, the long term, and coming to terms with the fact that yes, you have this condition but this doesn’t define you as an individual.
It’s just something that is there, and you have to come to terms with and then life carries on.
I’ve got loads of my patients who are very high-achieving, in all walks of life and retirement and busy with their family and friends, and doing lots of things from industry to hobbies, with their CLL and it’s not stopping them.