Monitoring My CLL

As a CLL patient, it's important to stay vigilant about your health. As a patient. You may have to do a lot of testing to make sure you're staying on track. In this video, we'll explore how CLL is monitored, how staging works, and how doctors recognize signs of progression. Patients with CLL are monitored with mostly blood tests over time. Namely, we do the complete blood count or a CBC that is done routinely at every visit. Another test that's used to monitor over time is the peripheral blood flow cytometry that was used in diagnosing a patient with CLL, and the same tests can be used in monitoring tracking the disease as well. Some of the newer tests that are used in monitoring disease on occasions is minimal residual disease testing or MRD testing. However, it's use right now is restricted mostly to the research setting. Your physician may perform a CT scan to look for response to the treatment, and sometimes for monitoring the disease. However, this is usually not routinely performed. The frequency of monitoring in CLL depends on how well the disease is controlled. Initially, you may need to monitor the patient even at a weekly interval after initiation of therapy. But once the disease has been well controlled, getting a blood test every three months to four months is sufficient. CLL staging, it differs from staging of other cancers, especially solid tumor cancers. So generally when we talk about staging, staging reflects how the disease has spread, with stage four meaning that the disease has spread to other organs. This is generally what we think about staging, especially in solid tumors. Now CLL is unique. It's a blood cancer. Blood goes everywhere. Blood goes to every organ. So CLL affects every organ. So basically, wherever the blood goes you can find CLL there. So if we go by the definition of the cancer having spread we could say stage four, but that's not the case. CLL is staged by a different system in the United States. We follow the RAI staging system, and it's a very simple classification. We grow from stage zero to stage four. Stage zero involves only the presence of increased white blood cell count in the blood. Stage one is presence of lymph nodes. If you feel lymph nodes in the neck, under the arms, or in the groin area. Stage two involves that the physician, when the physician examines the patient, they're able to feel the spleen or the liver. That's called splenomegaly or hepatomegaly. Stage three is done by blood testing where the patient is anemic. Hemoglobin is below ten, and stage four is again blood test. If the platelets are below 100,000 and the beauty about the system is you don't need any sophisticated testing, you don't need any scans. You don't need a bone marrow biopsy. It's blood work, which is just a blood count check and physical examination. And it also reflects the burden of disease. As the burden of disease increases, we see these changes. You get anemic in stage three. You get low platelets in stage four as the amount of disease in the body increases. Stages are used in cancer care to guide us on what are the best therapies. We still define if we're going to treat or not based on the presence of the symptoms. Those features that tell us the disease is causing trouble. That's usually how I tell you. If your disease is causing trouble, we'll take care of it. If it's not causing trouble just sitting there, we won't do anything. And the staging may guide us on what to expect, but it's very different than the staging that we have for the other cancers. Because the disease already starts off in your blood. CLL can really unfold in different ways. You can have this very slow, indolent, what we call very slow disease that will progress over many, many years. And many patients will be observed for years before they ever require therapy. But there are some features and some specific presentations they tend to present with a more a faster pace, and patients may require therapy at the moment they are diagnosed or shortly after they are diagnosed, so it varies a lot. So the most important thing is identifying it. Sitting down with a doctor to understand the specific features of your disease, but have the understanding that this is going to be a constant process, and it may be quite a while before we ever need therapy. We spoke to Jason about his experience living with CLL. People ask me, you know, like, how are you doing? You know, my my answer, at least right now, is kind of been well, my numbers were up, but they're up a normal amount and I still get confused looks because, you know, they're not quite sure how to take that or what that means. And and I'm not even sure I do. You know, it's progressing in a normal rate, which means it could blow up in five years. It could blow up in 20. The in-between is is a bit of the unknown. And it's different than an acute cancer or aggressive cancer where okay, you know, you got it. They go get it and hopefully they put you in remission. With CLL, this is something that you live with. I'm good right now. And maybe there will come a day when CLL will get to that point where it'll start affecting my daily health, and I'll have to get into treatment, and it will be a bit more noticeable that I have cancer. But as for now, I don't. For those that have CLL, the doctors are really positive and really encouraging and that the CLL can be put into remission and you can live a thriving life. Even with CLL. Monitoring, your CLL doesn't just provide clarity for your doctor, it allows you to be more involved in making decisions with your care team. On HealthTree, you can track all of your labs even if you've received care from multiple medical centers. You also get personalized treatment options, find side effect solutions, and can participate in accelerating research. Visit HealthTree.org to get started.