What is CLL?

If you've come across this video, chances are you or someone you know has recently been diagnosed with CLL or chronic lymphocytic leukemia. A cancer diagnosis is overwhelming. Hundreds of questions are probably running through your head. We are here to help answer some of those questions like what is CLL? How common is it and how is it diagnosed? We interviewed several CLL specialists and spoke to someone living with CLL to help answer these questions. Let's first define CLL. So chronic leukemia is a cancer of our immune system of our defense cells. So we have cells called lymphocytes. They are these cells that will fight infections fight bacteria, fight viruses. They're floating around our blood. Usually they live around the lymph nodes. So sometimes they have an infected tooth. You see there is a little lump on your neck and that's your immune system fighting that infection. So CLL is a cancer of these cells. So these cells you have a malignant clone just arises out of them and starts growing and then are detected throughout your bloodstream and also potentially in your lymph nodes and even in other sites. You may have heard your doctor call it chronic lymphocytic leukemia or small lymphocytic lymphoma. Is this the same condition or are they different? CLL is chronic lymphocytic leukemia. Image refers to the blood. So this is malignant cells that are circulating. We can find them in any tube of blood that we draw. SLL is small lymphocytic lymphoma. And OMA is a word that means a growth or mass. So SLL is a disease of the lymph nodes where nodes enlarge. So the question comes up well which one do I have. Do I have leukemia or do I have lymphoma. When one doctor used one term and another used the other. But the fact is that they're the same disease in the ways that matter in the biology of the cells and how they behave and how they grow, how they respond to treatments, we really think of them as the same thing. And the distinction between the two helps doctors understand where the cancerous lymphocyte cells are found in your body. So it's the same disease just found in two different places. Some people have quite a lot of it in the blood and hardly any in the lymph nodes. Others will have completely normal blood tests but will have very large lymph nodes. And so CLL is a more appropriate term for the former and SLL for the latter. And then there are people that are somewhere in the middle that have both and they almost become interchangeable. Now that we have a better understanding of what the disease is, let's look at who it's affecting. CLL is considered the most common blood malignancy in the elderly population. Around 21,000 new cases of class diagnosed per year here in this country. The patients with CLL, it's a slow growing, indolent cancer. So patients live long. So even though 21,000 doesn't seem like a big number, these patients live long and obviously add to the pool of patients with CLL. In most of the cases that we see in our clinics, it does not run in the family in most of the patients, I can't speak to those that have really aggressive or acute cancers. CLL is chronic, it's slow in it's timeline. So my life looks the same as it did before I got diagnosed. It looks the same as it did two years ago. There's not a whole lot of difference for me now. The major difference is really more in my mind knowing that I have cancer and just daily working through that. How do patients usually get diagnosed? So nowadays the CLL in patients is usually diagnosed incidentally, given the fact that people are more frequently going to physicians for physical examination or having routine surgeries, that leads to blood work. And that's the way most of the patients are diagnosed with these routine blood tests, where they get a blood count called a CBC, which shows an elevated, slightly elevated white blood cell count. And that's what leads to the diagnosis of CLL. In some patients, they are symptomatic to begin with. A patient may come to the physician saying that they have noticed a lymph node in their neck or somewhere under their arms, and that leads to the diagnosis. With further testing, a biopsy of a lymph node may be done, and that leads to the diagnosis of the CLL. I went to my annual doctor appointment and CBC differential blood test is part of that. My white blood cells, my absolute lymphocytes were high, and so my doctor referred me to hematology oncology. I had that appointment. At the time, my hematology oncologist had a suspicion it was pretty firm, but she reserved diagnosis until I had my Pet scan, and after that Pet scan, she did diagnose me with CLL. In other patients, some additional tasks may be needed. Those tests may include imaging like CT scans or Pet scans. A biopsy of a lymph node may be required to make the diagnosis, and then in some cases, a bone marrow biopsy may be needed as well. CLL is complex, but it is manageable. We hope this helps you feel ready for what's next. If you'd like to learn more about what happens after diagnosis and how doctors determine treatment, watch this video. If you found this video helpful. Be sure to give it a like and share it with someone who might find it useful.