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CLL 101: What Do Newly Diagnosed Patients Need to Know?

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Published on October 23, 2020

Expert Answers Questions From Newly Diagnosed CLL Patients

When you are newly diagnosed with chronic lymphocytic leukemia (CLL), you may have many questions, including: "What is it?” “What went wrong in my body to cause this?” and “What do the different stages mean?".

In this segment from our recent virtual town hall, co-hosts and CLL patients themselves, Michele Nadeem-Baker and Andrew Schorr talk to physician assistant and CLL expert Chris D'Andrea from Cleveland Clinic. Together they will cover everything you need to know about chronic lymphocytic leukemia.

This program is sponsored by AbbVie, Inc. Genentech, Inc. and Adaptive Biotechnologies. These organizations have no editorial control. Patient Power is solely responsible for program content.

Note: Due to high demand on the Zoom platform, the quality of this video is lower than our usual standard. The transcript is available below.


Transcript | CLL 101: What Do Newly Diagnosed Patients Need to Know?

What Is Chronic Lymphocytic Leukemia (CLL)?

Michele Nadeem-Baker: 

So Chris, when you're newly diagnosed, people often ask, how did I get this cancer? What did I do wrong? What went wrong? I remember scouring the internet for certain things like where I worked or was there a high incidence. Can you share how you normally answer that and give us a basic definition of what CLL is?  

Christopher D'Andrea: 

Yes. The short answer is absolutely not. There was nothing that you did to cause, or that you could have done to cause it, or even to prevent it. It's something that happens as you live and get older. 

Andrew Schorr: 

What is it? 

Christopher D'Andrea: 

What is it? So, essentially what we have is a disease of lymphocytesSo lymphocytes are immune fighting cells. So it's part of your immune system to help us keep fighting off germs and infections. And so, while we don't know the exact trigger or specific cause of CLL, we do know that it develops out of again, living longer. So as we live, our body continues to produce immune cells over time, we have to continue to reproduce immune cells as we get older. 

And in order for that to happen, one cell has to become two. And so the DNA of each cell is copied to make another cell. And so during this copy process, you have errors and defects that occur. And so normally the body either corrects, compensates, fixes these defects or these defective cells will naturally die off. CLL happens when these defective cells resist that natural self-destruct or death process. And then they are able to divide and produce more CLL cells gradually over time. And then at some point, you start to see changes in blood work, or somebody has symptoms or things of that nature. 

And I think the answer there is yes, absolutely. We have great treatments when necessary. It's a spectrum. And that not everybody who is diagnosed with CLL will necessarily require treatment right away. And so the term chronic in that means that it is a lifelong or an ongoing medical process. It's not something that maybe necessarily has to be addressed right away. And it's something that needs to simply be monitored and probably address down the road with treatment. So I think the answer again, letting them know that it is a treatable condition, although not curable, it is very treatable. And again, the decision process of when to treat is one that's individualized and should be had with your doctor. 

Yeah. So some cancers, there are genetic connections that are passed down from parent to child. This is not one of those conditions. So we don't know of any link there that you would pass along to your children. That being said, there is some connection in association with first degree relatives that are at higher risk for developing CLL, but that risk, it doesn't always translate into disease. So for example, if you have a family history of diabetes, that doesn't always mean that everybody in that family will get diabetes. It simply means that there is a higher risk when the condition already exists in the family, but it will not be directly passed on. 

Is CLL Hereditary?

Andrew Schorr: 

I just have a question that came in. Someone wrote in a minute ago and said their son was diagnosed with CLL at 34, but his father had passed away 11 years ago from acute myeloid leukemia (AML). So among leukemias in a family, is there a connection? 

Christopher D'Andrea: 

Again, not a direct genetic link to where leukemia is going to be passed down from generation to generation. However, again, there is a risk when it is already present in the family that there is a connection there. I don't know that we can quantify or specify that to the point where you would say, okay, all the family members need to get tested, but there is an association and there's probably a connection there. 

What Are the Stages of CLL, and When Does Treatment Begin?

And first of all, too, I'll say that the staging system is different and it's not apples to oranges when we're talking about, if you hear things like stage four, let's say breast cancer or things like the tumor cancers, this is a blood disorder. And so it is apples to oranges. So I say that because I don't want people to make that connection. That being said, the staging system is staged zero through four and zero simply means that a person has a high white blood cell count and specifically a high lymphocyte count. And the lymphocyte is a type of white blood cell, part of our immune system. When we go from stage zero to stage one that would indicate that the person perhaps has some enlarged lymph nodes. So lymph nodes can be found in our neck in our underarm and our groin areas. 

That's commonly where people will find them. When we go to stage two, stage two means the spleen or liver may be enlarged. Stage three would show that the person has become anemic, meaning the low hemoglobin on the CBC, on the blood panel. And then stage four would finally be a low platelet count. And so, again, it's a spectrum. And so one will typically over time progress from zero to one to two to three, again, over time and off treatment. If you have a high white blood cell count, maybe you don't have enlarged lymph nodes, but you have low hemoglobin or are anemic, that would put you at stage three. So the higher condition would elevate the staging, even if the prior condition is not present. 

Andrew Schorr: 

Some people may have, I mean, I've met people who had their white counts are low, even, but they have night sweats. They have fatigue. So, the quality of life is not good. That could be an indication of treatment, no matter what the numbers might say. Right? 

Christopher D'Andrea: 

Correct. And that's where there's this shared decision-making that comes into play. So, the numbers could look really not so good and the patient feels fine. And that may be a reason to treat. Conversely to your point, the numbers could look relatively okay. Or at least not too bad, but if the patient is experiencing symptoms that we can attribute to the CLL, then that would certainly be an indication to treat, to promote the preservation and improve the quality of life. 

What Is the Difference Between Mutated and Unmutated CLL?

Michele Nadeem-Baker: 

What’s mutated and unmutated, and why is it important to know this? 

Christopher D'Andrea: 

This might be one of the most confusing aspects about CLL and understanding their disease from the patient's standpoint, because those terms you inherently associate good and bad, right. Mutated bad unmutated sounds normal. It's good. But actually, the opposite is true in that the study of this disease has shown that folks with an unmutated IGHV. Those tend to be the more, let's call it, the less favorable prognosis or those folks may require treatment sooner, versus the mutated is actually better or a more favorable prognosis and may not require, let's say treatment right away. So the way to think about this is, I think we have to understand first what's normal, let's say B-cell or lymphocyte versus one of these abnormal CLL cells. And so, if we look at it from what's normal, we say that the B-cell’s job is to make antibodies or immunoglobulins. 

And these are things that help us fight off disease and protect us from viruses and bacteria. Okay. And these are proteins essentially. And so, as bacteria and viruses are constantly evolving and mutating and trying to survive, our immune system needs to be able to adapt accordingly. And so this gene specifically codes for the immunoglobulin to have some variability, to adapt and to seek out those foreign invaders, the bacteria in viruses and to bind with them and then allow our immune system to recognize it as a problem and take it out. So conversely, an unmutated so, that's going to be more of an abnormal B lymphocyte. Okay. And so we're getting further away from the norm is how you can think of this. So again, the normal B lymphocyte produces these immunoglobulins and has the ability to have some variability with those immunoglobulins based on the bacteria and the virus, or what have you, that's causing trouble versus an abnormal cell. Doesn't have that capability. So again, it's further away from the norm, more diseased. That's how you can think about mutated versus unmutated in a general sense. 

How Can You Stay Healthy During CLL Watch and Wait?

Michele Nadeem-Baker: 

So this is why, and it's counter intuitive that the unmutated is not so good. What can CLL patients do to stay the healthiest they can? Like diet exercise, do they take supplements? 

Christopher D'Andrea: 

The short answer of it is that there's nothing dietary wise or supplement wise that you're going to be able to do to let's say, treat or cure the CLL. Okay. That being said, there are things that can be done in order to, let's say, help, help you along the way here, as you're undergoing your CLL, either watch and wait or your journey. And certainly, diet, exercise, maintaining a healthy weight is going to be helpful for a few reasons. Number one, if you do require your treatment at some point, then generally speaking people that are, let's say, less healthy, more overweight, have other medical conditions. They may struggle with certain treatments and, and complications from treatment. So I think in a general sense, we want to think about health and wellbeing in the sense of treatment and tolerability of that treatment. 

So right now, it looks like we have a surveillance versus treatment kind of pros and cons list up here too. I think of this in terms of, again, we want to optimize our health anyway so we're sort of prepared and ready to be able to deal with this disease whenever we necessarily need to if that makes sense. So obesity, there are studies that have suggested that, especially with women, if they're obese, then there was some study suggested that they may not do as well in terms of the response or the duration of remission. Obesity has been implicated in a lot of different cancers. So that's another good one to think about as we're thinking about lifestyle and lifestyle factors that could influence this 

Michele Nadeem-Baker: 

And regarding your talking about exercise, do you suggest hardcore, like running, cardio, weights? What is it that when you think of exercise and I know it's different for everyone, but what do you usually suggest is cardio the best, weight bearing? 

Christopher D'Andrea: 

I would say that all of those things can be good. It certainly depends on the person. And so if you're somebody who's not used to doing activity or exercising than the best thing to do is to get out and start walking, ideally walking 10,000 steps a day, if possible, but on average, most patients, most people in general only get about two to 3000 steps a day. And so a lot of times now with our smartphones and our watches and things, we can track that and actually quantify it. Andrew's pointing to his right now. I see them. Yeah, that's great. No, so I think that's, that's a great thing to do for somebody who's never gotten into exercise. If somebody who likes to exercise likes to go to the gym, and then you can kind of start to personalize it, but from a looking at just CLL, there's no reasons let's say why people couldn't do those other more intense activities. But I think the bottom line is just getting out and being active. And whatever that looks like for you is certainly encouraged. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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