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What should I know when first diagnosed with chronic lymphocytic leukemia?
Description
Learn about what to expect when first diagnosed with chronic lymphocytic leukemia (CLL) in this video.
On this video

Lydia Scarfò, MD
Transcript
What should I know when first diagnosed with CLL?
At the time of diagnosis of chronic lymphocytic leukemia. I know it's sometimes very difficult to keep up with the information that the physicians are providing during the appointment. So the main message is that the disease follows an indolent clinical course. So in some cases never required treatment and we should not hurry to start treatment at the time of a diagnosis unless there are specific signs or symptoms associated with active disease. These signs or symptoms of active disease are usually detected through physical exam to identify the presence of a large lymph nodes and the imaging studies like abdominal ultrasound and a lab test, including basically complete blood cell count. We do not worry about the number or white blood cell count as or a disease. The way we are diagnosed is chronic lymphocytic leukemia, but is not the way the disease is harming the patient. So no worries. Even if the white blood cell count increases over time, the focus is the value of hemoglobin because if the value of hemoglobin drops down, the patient can experience anemia, and the anemia may be associated with symptoms and the platelet value because the low platelet value drops down, there is an increased risk of bleeding. If these values remain normal or even if not normal, they are only slightly decreased. There is no need to start treatment. The patients should be followed on a regular basis. So the most relevant information we provided during our first appointment is usually that this disease do not always require treatment. If it requires treatment that there are new targeted agents available and very effective and well-tolerated treatment strategies. The most important, let's say, has the instructions we we provide the patient we are to, of course, follow a healthy lifestyle, get vaccinated for a disease where active vaccines are available, including a flu shot. The SARS-CoV-2 vaccination, pneumococcal vaccination. These are all important way to prevent infection because in this disease there is a higher risk of infection. And also we recommend an annual dermatologic checkup because the disease is favoring the occurrence of skin tumors that are easily identified with a regular checkup and removed in the outpatient clinic without a long term consequences. So they should be identified early in order to be managed in the best way. So that's why I like to say it's a cancer of the immune system because it is a cancer and but at the same time, it's critical to understand that it's a cancer that can behave very differently. It's a chronic disease. And patients think, Oh my God, I can cure this. And my typical reply is we don't cure Diabetes, we don't cure high blood pressure once. You're diagnosed some type of diabetes, you may just adjust your diet. Sometimes they may need pills, sometimes they need insulin, sometimes they need the pancreas transplant. So but it's a chronic disease that you're going to be living with it. And in the great majority of times, we don't need treatment right away. So as we talked before, sometimes you find you detect it. But when you look back, you actually had been present for quite a while already. So in most patients, you do not need treatment right away. And we know that we have criteria to treat. So if you have we have beautiful therapies that work extremely well, but we know that if you don't have indications for treatment and basically if you have symptoms of the disease or treated, there's no reason to leave symptoms. If we have treatments available. But on the other hand, if you don't have symptoms, we have criteria to treat a symptomatic disease. But mostly what happens is if we find it, it's not giving you trouble. We will watch it. We won't even treat it. There's, from diagnosis, There's a period of, as I mentioned before, this is these are not aggressive lymphoma. We call them indolent lymphoma. There can be a period that can be very heterogeneous. It can vary from patient to patient. But in general, there's a period that patients do not require treatment, any sort of observation. And the number of these cells in your blood doesn't necessarily determine that patients will require treatment until they meet this criteria by iwCLL. That's what we call at the time of treatment. That's what we call at the time of treatment. What I usually tell my patients that the treatment has changed since I was in our fellowship and largely there's less and less to almost no role of chemotherapy at the moment because of the new drugs are available to treat these disorders to the point that we can get very deep level of responses in right now, actually time leading to therapy where we treat patients for a year or two years of pending on the setting. And after that we just stop treatment and continue watching patients. So the traditional chemotherapy, therapeutic agents are less less favored, such as those are requiring infusions. And that patient develop, you know, the traditional picture that people think, you know, losing their hair, you know, nausea and vomiting. Right now, the treatments are more targeted. There have been you know, very good knowledge in the last few years, especially how these cells act and novel therapeutic agents are called Burton's
tyrosine kinase inhibitors. They have revolutionized the treatment of CLL. So as I mentioned before, CLL's are B-cells. So there's something called a B cell receptor
that promotes the signaling of towards the cell that leads them to increase proliferation and survival. So now we use medications are specifically target certain pathway areas on the B cell receptor signaling that make these cells, you know, stop proliferating. And these are typically pills that patient takes. There's also monoclonal antibodies, These cells in their surface, they have a marker called CD20. And now we have antibodies directed against this market that we use it in combination
with different agents. And we're able to control these probably virtual cells very successfully. The new agents are more targeted rather than using a chemotherapeutic approach, which is kind of killing good cells and bad cells. That doesn't mean that the new agents are devoid of any side effects, but based on the recent results of data in comparison to traditional chemotherapy, these agents fear to be more favorable, useful and better.